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How long do chemotherapy side effects last?

77 answers | Last updated: Jul 16, 2014
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Caring.com User - Bonnie Bajorek Daneker
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Bonnie Bajorek Daneker is author and creator of the The Compassionate Caregiver's Series, which includes "The Compassionate Caregiver's Guide to Caring for Someone...
63% helpful

First off, thank you for your well-written email. I can certainly hear your frustration.

Secondly, there is no question you should get a second opinion on the after effects of See also:
8 Steps to Create a Strong Cancer Support Team
your chemotherapy by another oncologist, outside of the practice of your current oncologist. A second opinion can either validate that the healing process is normal, albeit slow, or help you correct it if it's not. Either way, you'll have some expectations about what's coming next.

Remember, you have been through a tremendous amount. You've had major surgery and powerful chemotherapy, both of which will affect you for some time.

Additionally, you've likely had prescriptions. With pain medication often comes constipation and cloudy thinking, so if you are still taking these medicines, consider talking to your doctor about changing them. Make sure you're drinking enough water and exercising a little, even just walking around the neighborhood.

Try exercising your mind, too. Here are a couple of exercises to try: crossword puzzles, word searches, Sudoku, and jigsaw puzzles. Don't beat yourself up if you can't finish one of these at one sitting. Just do it for a few minutes a day. Build up when you're feeling comfortable. You may also want to try to follow a recipe. Go very slowly, measuring each ingredient and putting it together deliberately. Like muscles, sometimes you have to train your mind to work harder. Progress will likely come with time.

 

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edterijo answered...

I have experienced a lot of your symptoms. I was diagnosed with Stage 4 colon cancer at the age of 37. Although the latest scans show there is no more cancer, I am still taking chemo treatments to try to locate any rogue cells that may be floating around that the scans have not been able to detect. MY own reasoning as to why I feel worse and it seems to be taking a longer time to recuperate between the treatments, is that there are less cells for the chemo to attack. The chemo is being pumped in and attacking my own healthy and perhaps some of those very few rogue cells as well. Whether that is so, I don't know. I can't seem to come up with anything else. I have two more treatments to try to get through and I really would like to stop and try alternative medicines I wasn't able to take because of the interactions that may have occurred while taking chemo. My treatments are the same as your in the sense of time line: once every three weeks. I have about a week and a half windo that I feel ok and well enough to drive. I know my limitations though and won't drive when I'm in that "chemo fog." Mind if I borrow that phrase you coined? Hope all goes well in your future.

 

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An anonymous caregiver answered...

Since I wrote this question my LTD company sent me to "their" doctor, a neuropsychologist, for a second opinion since they didn't understand a thing about chemo-brain. To say I was worried is an understatement because I was certain "their" doctor would say there was no reason to be unable to work at this point. But all I could do was be truthful about what I feel and what has been going on day to day with what I am able to do and what I am incapable of. Well talking to him lasted about 10 minutes. Then I went through a grueling 6 1/2 hours of numerous tests. And then all I could do was trymy hardest!!About the time things seemed easy and I thought I am acing this...which I really wanted to do...they would throw something else in that would blow my brain out of my head and into a spinon the desk! Not literally of course. I was actually hoping they would just tell me you're just fine, that I just needed to work harder. I know it doesn't make much sense, but it beats what I am going through. Bottom line on my testing was: every symptom I have complained to the many caregivers for months was found to be an actual problem. My symptoms have nothing to do with depression or lack of willingness/desire to get better. It was so on target with what I have felt it even showed that not only do I want to return to my occupation, but not being able to do so was affecting my sense of self worth. The surprising conclusion to me was my intellect was "intact". This chemo brain makes you feel like a total idiot! The last line said my ability to work was "severely impaired". While having the test results was upsetting/depressing the first couple of days - like I said I wanted someone to tell me I was just fine, it is now comforting to feel "validated". I have been told it is unknown when I will improve, but usually it is at least 2 years following chemo for the damaged brain cells to repair themselves. It is such a new field of study that no one knows the outcome for sure. I wake up everyday though thinking "this is the day it will be gone". I want to stay optimistic!!! They also can't tell me entirely why we get it. Although the thought and research is some of the medications cause more brain damage than others. Remember the chemo therapy meds don't distinguish non cancerous healthy cells from cancerous ones. Just thought I would update for anyone else that has this problem. Even though my brain is now done for the day and I think I used up all the spell check available on my computer ;) I have to keep my sense of humor and not allow the frustration to take over...although I am not 100% successful there either. And to others who may have this:please judge your ability to drive your vehicle very carefully. Most days my brain is so impaired I can not drive even in the neighborhood. But I would rather not drive than harm anyone. I would be driving under the influence: of chemotherapy side effects!

 

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edterijo answered...

Wow. In re-reading these entries, I see that I didn't talk much about my symptoms other than saying that they were similar to yours. I think this says a lot about this "chemo fog" that is certainly real. I agree with you in keeping our sense of humors. I don't know what I would do without it or my husbands'. I am having my last treatment on August 12th and will meet with my Oncologist just before the treatment and will discuss this with her. I will see what her recommendations are. I cannot even fathom feeling like this for two years though. Ugh. Thank you for your informative question and response.

 

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An anonymous caregiver answered...

To edterijo...I hope and pray for the best outcome for you and your family. And many thanks for making me not feel so alone. Sometimes I just feel no one understands the true magnitude of this problem. It's inspiring to know there are others who do. Now let's shout loud enough to get more studies done on this side effect and how to treat it.!!! And I to am lucky that my husband and I have drawn even closer too - we've been married 37 yrs though. Hang in there!

 

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ChemoBrain answered...

Just came across this. I hear you loud & clear! I was treated with the same drugs (+ Tamoxifen)... in 1994 at the age of 39 . Sorry to say that I still am experiencing all the things you very aptly described. I was about 5 years past treatment before I even heard the term "chemo brain"; up until then, it was apparent my experience was not the norm. I continued to work, but it became so much more challenging, and was a steadily declining situation until 2 years ago when I just couldn't continue any longer. At first, I thought it must be getting worse & couldn't imagine why, but later decided it was just that all my coping mechanisms and compensatory behaviors were just no longer working for me -- I was exhausted mentally, emotionally, and physically. I went out on disability. I had been so reluctant to do this, as I have educated myself well on this subject (I'm an RN) and was convinced that it was unlikely to lead to any definitive answers (I was correct). I, too, had the full battery of neuropsychological testing. But unlike you, I tested pretty well (always have been able to do that!). Some, more knowledgable on the subject, told me that it could be that I was functioning at a very high level prior to chemo and, though I still fall within a high normal range, it could represent a relative decline that could be just as impairing. Others, less so, tend to want to attribute this to depression. I've suggested that any symptoms of depression I exhibit are the RESULT of these terrible troubles and the realization that I could no longer work like this, not the cause. I also attribute some of this to estrogen deficiency, as the chemo resulted in immediate menopause with all the usual -- but severe -- related symptoms. Sounds like you may have obtained your LTD? I was not so lucky... mostly undermined by the neurologist & neuropsychologist I saw who admitted little knowledge of this phenomenon. Lawyers, expert in ERISA cases, advised me that I have a good case, but decline to take it as I had filed & lost my first level of appeal myself (my work has been in the insurance industry the last several years, so I was well qualified to do so). I am now self-employed as an "Executive Charwoman" -- I clean houses. And I struggle even with that, as far as time-management goes; as you said -- no concept of time anymore. And the business side of it gives me fits. I live in the Pacific Northwest and, getting nowhere here, flew down to UCLA Med Ctr and saw the director of the Survivorship program there, a Dr. Patricia Ganz whose name I had encountered in my research. It was... helpful, but it was clear again that even the experts have more questions than answers. Like you, I was just looking for validation. The fact that I managed to work seems to convince some that I couldn't be as impaired as I claim, but they don't realize what a time I was having. Frankly, had my employers been a little more on top of things (we're talking the health insurance industry here), I doubt I would have lasted as long as I did. Certainly, everything I read suggests that for those who suffer these effects, most do in fact recover in a couple years. However, there is a small group (including me) for whom it is persistent. And, no disrespect to Bonnie, the expert answerer here, but if one more person tells me to work some crossword puzzles, I could do them serious bodily harm! Her words are kind and well-intended, but amount to platitudes, in my opinion. Well, you opened my particular "Pandora's Box" here. Hope this isn't too discouraging... maybe you'll be one of the luckier ones and it will get better soon. My best wishes to you.

 

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An anonymous caregiver answered...

To ChemoBrain: Boy can I totally relate to your response. I too have gotten many "solutions" to this problem including puzzles and games. I do these in hopes that it will eventually help, but most days it just seems to cause more confusion and frustration. Yes I did get my LTD, to which I am very thankful. However, I am also fully aware that even a year ago it probably would not have been possible. I too found the study from University of Rochester in a desperate online search one day for what I was going through. The actual article that I was able to access was actually more specific than the synopsis on this site. As I read the article it was like they were describing me to a tee. I printed it out and have given it to every care giver I have seen since, including the neuropsych to was sent to by the LTD company. I am convinced this may have helped my case and will be eternally grateful for the researchers on this project and look forward to further advances. I would love to be involved in some type of clinical trial, but have not found any online. Again, fortunately I have a very well versed PCP that is treating my symptoms for the time being. But it is still the hardest battle of my life. Cancer is nothing compared to this. Sorry if this whole response doesn't make a whole lot of sense, but the past 3 days have not been "good brain days". I just wanted to express how you are not alone. And thank you for letting me know I am not alone as well. Thanks :)

 

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ChemoBrain answered...

My oncologist (who I love and credit for saving my life) was taken aback when I said that chemo was a piece of cake compared to chemo brain -- but I guess you know what I mean. I have no regrets about the treatment I received; I believe it was the best to be had at the time -- but still... There are actually quite a few articles out there, but not a lot of new information. I tried a trial of Ritalin prescribed by my PCP, but no help. I fear there isn't a lot to be done. Also saw a psychiatrist recommended by Dr. Ganz (at UCLA) who is familiar with this -- figured I'd better comply with the whole depression angle, just in case. Not much help there either, nor was the sleep specialist able to provide much (I also suffer from insomnia, though I think -- again, like you -- that overstimulation contributes). While I appreciate that there is research being done, I think that the fact that there is no "before" baseline information really puts me/us at a disadvantage. I also believe that improvements in chemo drugs, making them more selective & targeted, with less collateral damage, will result in fewer being affected like this. We're just in an unfortunate time period in this respect. I'm going to do something that may be foolish, but what the heck... my email is ConardWaln@verizon.net. You're welcome to contact me if you want to share any info or just vent to a sympathetic comrade. I'm not doing a lot of active research right now -- had my fill of it over the last couple years and just need to live my life, such as it is, but when something pops up, I can't resist poking around again. I'm lucky as well to have a terrific husband who has been so supportive in all of this. So, for all the whining here, I'm actually pretty upbeat! In any event, take care and good luck!

 

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joevig answered...

WOW I too am thankfull to my oncology DR.and his team . I was diagnosed in 1999 with hodgkins stage 3 b . did the ABVD and MOPP and radiation . remission and relaps in one spot one year later . I was blasted again and sent off for a stem cell transplant , which in those days they blasted you all at one time till your immune system and everything was cooked , but what a sweet smell to hear I think we got it . I forced myself back to work (hospital) because last time I was working tward trying to build up my stamina. It was so much harder this time and I just kept working ,not wanting to let all the side effects get me .THE DOCS SAID SOMETIMES PEOPLE HAVE THIS REACTION AND IT CLEARS UP AND SOMETIMES , IT STAYS AND WE COPE . After reading the RNs story here I felt like a burden was lifted and I am not the only one that has this fog and not being able to cope with things that befor e were not even a problem . I have numbness in my feet Legs and fingers . Driving only 15 min and only in daylight . I wear an insulin pump 24/7 oxygen and a CPAP most of the time to help be breath better. . Sometimes I am confused and I sleep about 12 to 15 hours daily and acording to the sleep studies I get N O REM sleep resaulting in total exhaustion even after sleeping all that time . You know ??? I could go on and on But I just want to say I AM SO THANKFUL TO BE HERE TO BE ABLE TO SAY HEY BE OPEN TO SOME OF THESE TREATMENTS . i HAVE BEEN ABLE TO SEE THINGS i WOULD HAVE MISSED , BUT TO ALL OF YOU THAT HAVE THIS,, iT IS REAL , AND THE MORE INFO WE GIVE TO THE DOCTORS THE MORE THEY CAN STUDY HOW TO FIX OR PREVENT IT BE STRONG ,,,,,, ENCOURAGE OTHERS ,,, ONE MORE THING !!! TRY TO FIND SOMETHING EVERYDAY TO JUST LAUGH OUT LOUD ABOUT , OH WHAT A FEELING

 

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ChemoBrain answered...

To JoeVig: Way to hang in there! I'm sure no one is harder on us than we are on ourselves -- wouldn't you say? But I got tired of beating myself up -- I know this is real. I'm very much into the scientific method, but lacking that kind of data, we, and they, would be foolish to discount our anecdotal evidence. I try to encourage my care providers to learn from me, about me. And to keep an open mind should they hear such tales from others. Yes, the list of woes could go on for quite a while, but it's not the sum total of me. Better to make peace with the situation. Take care all!

 

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DonnaLou57 answered...

It is nice to know that I am not alone experiencing the "chemo brain" problem. Unfortunatly I still have the problem and I am 8 years out from treatment. I did take tamoxifen for 5 years and have been on Femara for 2 years. I am on oxygen 24/7 to help with my breathing. It is scary to realize that you have driven somewhere and don't remember driving there. I am exhausted all the time and part of that is because I don't sleep but an hour or so during the night. I do try and stay awake during the day so that it will not make the problem worse. My doctors have run all the tests to see if there is something else causing all these symptoms and have found nothing so far. My oncologist told me that more people are surviving breast cancer so they do not have anything to compare past experiences with. We are the survivors who are setting the standard for the future side effects. I was told in April 2001 that I had stage IIIA breast cancer. I had 8 rounds of chemo and 33 radiation treatments. I was so excited when I finished my treatments and couldn't wait to get back to "normal". I have not worked a day since. Everything went down hill from there. Now I have a new "normal". Not exactly what I wanted but glad to be alive. I have a great team of doctors especially my oncologist and my pain management doctor. They take very good care of me. I developed rheumatoid arthritis and neuropathy in both feet from the chemo drug Taxol. I have severe bone pain in my back, but no cancer. I have a severe case of lymphadema in my left arm. I was in the hospital for a week with it back in April. It has been a hard time, but I thank God everyday that I wake up. I hope that research will be able to find what causes and cures for some of the things that are "lingering" on after treatments and most of all a cure for cancer,. I support Relay for LIfe and have been a team captain for 7 years. Hang in There. I try to look for the good and not the bad. I found my best friend from going to my treatments. We both feel that our friendship is the one good thing we both got from having cancer.

 

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klake45 answered...

Dearest fellow Surviors,

I was diagnosed with Breast Cancer Febuary of 2007. It had metasticized to my right smal pectoral muscle and 15-17 lymph nodes on my right side where they found 4 tumors and one tumor in my left breast.

I had a raddical mastectomy on March 5th of 2007, I did 4 of the 6 recommended Chemo treatments and then ended up in the hospital with staff infection in my chest and pneumonia due to the chemotherapy and its effects on my immune system. I stopped the chemo and did about 30-31 radiation treatments.

I TOTALLY understand the chemo brain fog. I still

forget just like you all have described. I am better, and I am blessed., I am alive. I have a wonderful family, Doctors and friends, and all of you to share our good times as well as bad. here on the caring and sharing internet.

I am not sure if I will ever be able to finish a sentance without forgetting what I was saying, I don't know if I will ever completly feel "Normal" again, but I do know that God has brought me this far, as well as all of you. You will be in my prayers and here if you need someone to talk to. Thank all of you for sharing your personal stories with me, God Bless Each and Every One Of you,

Sincerest Thanks,

Katheryn

 

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shelbyzgrammy answered...

It sounds like we need a chemobrain message board or chat experience. I don't know about the rest of you, but for me everyone's story is encouraging to know I am not alone in this world. Even if I did have to finally find someone with a similar story in the Pacific Northwest! It is someone who understands me!! Thanks to everyone who has posted. I only hope for God's blessings to continue with you.

 

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An anonymous caregiver answered...

Yeah!!!! I am not crazy!!!! I have been out of treatment for 11 yes 11 years and still have problems with chemo brain. I just take each as it comes. Some good ones and some bad ones. But I am still here and have gotten to watch my children grow up and my five grandchildren being born.

 

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greendeere40 answered...

Helpful -- Gave more insight I had in mind to answer the one person who gave out her email address. On February 28th I woke up feeling not to great, I thought it might be a gallbladder attack. My husband and others new I did not look good for sometime. Have not been to a doctor for sometime. Had no real reason do so, fact I only had colds or a few bouts with the flu. My husband took me to the ER, and immediately they did all kinds of test. The test came back showing I was anemic, low blood and also showed I had two gall stones, but that wasn't the big concern. They admitted me to hospital where they started given me blood (2 pints that evening and 2 pints the following morning. I also had a CT Scan showing a tumor in my colon. The following day I had a colonoscopy that showed a full blown tumor. They were very concerned and operated on me the next day, where they took the tumor and a piece of the large colon out. Also they took out quite a few lypmh nodes, they only found one to show cancer. After that I was suppose to see an oncologist to see if I would need any treatments. I was also told by the surgeon, that had got it all and if my CA's where down to normal I shouldn't have to have any chemo or radiation. But the oncologist had other ideas. I went for a 2nd opinion and got much needed and better info I asked him about diet,nutrition, supplements and exercise. He was very informative, but also told me I should make up my own mind. So far I have been able to say I have had no chemo. I now see two doctors every (3) months. I am hoping I have made the right decisions. With prayers and help from my husband, family and friends and even strangers, I am sure this has helped me. I am now stronger more active and able to do things better then I have been able to do in the pass 2 years. Most of this started from extreme stress. I guess what I am saying is I have read extensively on these treatments and didn't like the sound of the side effects. I am hoping what I have chosen is the right way. So any one that has concerns about these treatments, please look for all the information which are good or bad and decide what is best for you. I have strong support from my family, I have a daughter, and twin grandaughters that are RN's. Also a husband that is very supported of my decisions God bless those that have been through this.

 

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ChemoBrain answered...

To the most recent "Anonymous" ["Helpful -- Gave more insight..."], from the one who gave out the email address:

I tell everyone facing a diagnosis of cancer to educate themselves, get as many opinions as needed, then trust yourself to make the right decision for you -- the one you can live with (figuratively and literally). I was fortunate to have access to a University Medical Center (in my case, WA in Seattle) where they conducted multidisciplinary consultations and all the info was evaluated and discussed by a breast surgeon, a medical oncologist, a radiation oncologist, and pathologist who then presented their findings and recommendations to me.

While "chemo brain" had not really been identified yet and was not listed as a possible side effect, had I been told of it, smarty-pants that I've always been, I probably would have thought it wouldn't happen to me! Even so, I have no regrets. I was 39 at the time and one of the most compelling things I read was that I had a 30% chance of recurrence (= terminal)and I had a lot of years to get through yet. I elected to have more aggressive therapy; i.e., chemo (which is now considered a more accepted course & no longer "aggressive" -- I benefited from early findings of their clinical research & experience).

I always cringed a little when someone else with a similar diagnosis told me they didn't "have" to have chemo -- I wasn't sure that was a good thing. Still don't know, I guess. But here I am, 15 years later! And, hopefully, people have a little more info now to make an informed decision.

Best wishes to you and yours.

 

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octoman answered...

Chemobrain 15 years wow ,beats my no treatment 7 years.cancer expirience you certainly have a brain get the facts then make your own best,for you,choice,is also what I do.

 

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An anonymous caregiver answered...

I too am a breast cancer survivor and I truly understand about the fog that you have had. I had cancer in 1997. Before the chemo, I would remember everyone's birthday and would get the card in the mail to arrive on their special day. During the chemo fog, I would not remember the birthday until after it was over. Now things are better, I remeber and get them in the mail (either before or after the day but they get there) There were other things that happen also from the chemo. My body temp. changed I was warm all the time. The chemo put me into memopause. I had emotional ups and downs, developed a real bad skin problem about three years after the last treatment. Only to find out it was a side effect of the chemo. That too went away. However the fog lifted a great deal about seven years after my treatment. Then about five years from the last chemo I started to feel different, it was as if I felt it, one day it felt like a weight was lifted off of me. I know it is frustrating but it will get better. The fog will go away. You will get your memory back. But it is frustrating when you don't have a clue what is going on and what to expect. It does help when you have someone to talk to that has been through it.

 

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beatbreastcancer answered...

Here's another one! I, too, was diagnosed with breast cancer in Feb. of 2007. I'm now a 1+ year survivor, and I had wonderful doctors through it all. My oncologist, however, is really fantastic; he is so on top of things, he knew about chemo brain and gave me information he'd downloaded right away. One article is from the New York Times in 2007 and I want to quote part of it: "Most researchers studying cognitive deficits say they believe that those most inclined to notice even subtle changes are high-achieving women juggling careers and families who are used to succeeding at both. They point to one study that found that complaints of cognitive deficits often did not match the results of neuro-psychological tests, suggesting that chemo brain is a subjective experience." Sound familiar?? I still have chemo brain almost 2 years after finishing chemo, but it does seem to sllloooooowwwlllllyy be improving. With regards to the lack of sleep, what helped me was, when I talked to my PCP about my trouble sleeping, we talked about where I was with my treatments, surgeries, meds, etc., and he told me that people who have finished treatments and surgeries tend to sort of feel left out of things; we all WANT to be done with that stuff, but when we are, we kind of feel lost. We had learned to live with lots of appointments, treatments, visits, etc., and once that was gone our lives seem to have lost an anchor. We have a "new" new normal, and although depression during cancer is common, it can be exacerbated by, as I sheepishly put it, "I don't feel special anymore; lots of people were helping me, concerned about me, showing me attention, and now I feel like I've been shut out. Is that selfish?". The answer was No! He put me (in addition to the Zoloft I was already on for depression) on 1/2 or 1 pill nightly of Trazodone, one of the early depression meds. Just like lots of other old meds, they're discovering new uses for Trazodone; it's helpful for relaxing and calming the brain to help sleep, is not habit-forming, and, unlike sleeping pills, continues to work over time. Sleeping pills, he said, work for about 2 weeks and then don't work any more. See what your doctor(s) say(s); maybe it'll help. God bless, y'all, and KEEP ON TRUCKIN'!

 

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octoman answered...

chemo brain sounds simular to the effects my mother had from electro convulsive shock treatment I guess its another case of the end justfies the means. may be?

 

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Elbert answered...

You must educate yourself as to the side effects of all the drugs you are administered. I was a Stage IV colon cancer, post-surgery, on chemo. After treatment 5 I couldn't feel my hands or feet, was losing my vision, had trouble breathing and was having blood pressure problems. I stopped chemotherapy. The drug Oxylaplatin I found out is made from platinum (thus the cost) and you can see the grey-silver color in your hands and feet. There is a website about Oxy, and plenty of people have problems with it. I was told just a week ago that it will take a year for the side-effects to resolve - I still have the "peripheral neuropathy", my feet are like bricks. My advice is you must know your own body. My body was screaming STOP. The result for me was unexpected; my CT scan and blood work are all clean now, no sign of cancer.

 

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RC1963 answered...

My qualifier: diagnosed with stage III breast cancer 2/2007 (43 y/o), treatment included 4 months (8 cycles) dose-dense AC-T. I went back to work part time about a month after finishing chemo, with a month remaining of radiation therapy. My MD's acknowledged chemo "brain" - short term memory was awful, could not read and retain basic info, and definitely found my ability to drive impaired (generally - any multi-tasking activity was a huge challenge). The best line that came from one of my MDs - "One day, a year after you are done with treatment, you will wake up and realize you feel better." That was absolutely true. There are lingering cognitive side effects though much less intense and frequent (short term memory problems, word finding difficulty). I continue to find that I can reach a point of intense exhaustion like I never experienced prior to chemo - when I hit that wall, I am done for the day. Driving at times still feels challenging unlike pre-chemo - my feeling is that anything requiring intense concentrations taps me out. Another, not so minor point, my sexual drive has felt annihilated post-chemo. I never hear others discuss nor read any articles about this. When I bring it up with the MDs they say it's common - but why does no one discuss this or think it's important?? No doubt the treatment and immediate effects are awful, but these other lingering side effects are the significant and impact quality of life.

 

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An anonymous caregiver answered...

In response to RC1963(and others): My opinion is that cancer research for so many years has been driven on surviving the cancer. I think it is only now as we are making some good progress on the survival rate with a lot of types of cancer, us survivors are realizing there are lingering side effects to the treatments, especially chemo. I think research still needs to be continued on curing this disease, but I also feel it is now time to branch out in a BIG way on the short and long term side effects of the treatments. I have had my life TOTALLY change by the chemo I received. I am not blaming anyone at all. I know this is a disease that must be fought aggressively. And I know I took the right steps in fighting my cancer. And had they told me I had the chance of getting all the side effects I did, it wouldn't have changed my decision. Because to tell someone, or list it in a informed consent form in no way prepares you for what this chemo brain process is truly like. But for so long I felt like a failure, like I wasn't trying hard enough, I was just being a baby, it was a character flaw and on and on. It took a long time for me to realize these changes are real. Part of the reason it took so long is the MD trying to downplay complaints i.e. it's depression, your body has been through terrible shock and trauma, it's stress, it's not a side effect of the chemo, try doing more mind games like puzzles and word games, etc.etc.- sound familiar to anyone else out there ?!? And I am not trying to bad mouth any MD, but I would like to highly suggest listening to your patients complaints and take them seriously. Speaking for myself, I am very happy that your knowledge of treating cancer has given me extra time to see my family grow and enjoy life's simple pleasures we often overlook. But,maybe if more Md's listened to the complaints of after effects with an open mind we would be much further along in research and possible decrease of severity in this group of side effects. Now I say we all honor those who have gone before us and gotten us to this point of survival-which is huge-and use our voices to now look at the prevention or at least decrease the severity of the side effects, especially chemo brain as a true medical side effect. I so appreciate all those who fought the battle to live(and lost) so the research would allow me to survive. Now lets take one on for the next generation and push for more research in not only the survival aspect of dealing with this disease, but in the prevention or reduction in side effects that some Md's don't want to even acknowledge!!

 

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Yogi answered...

My case : diagnosed with Melanoma stage 3 (2 lymph nodes affected !!) (Sep 2008) took chemo for 8 months - but did intense yoga all along - feeling fantastic now with absolutely no side effects at all ! Live in central New Jersey - will be happy to assist you if you want to start doing simple yogic exercises and proceed to more intense ones - I do yoga for 2 hours a day (1 in the morning and 1 in the evening) - yes it takes 2 hours but you will become healthy again and stay disease free for ever.

 

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An anonymous caregiver answered...

I am amazed at everyone's response. And as a chemo brain myself, it is so reassuring to know that I am not alone, even if there isn't much to be done about it. My Dr. even sent me for a head MRI and suggested that I see a psychologist when it came back normal. He did suggest mental exercises too. Every now and then it gets me down - the simplest things, words, meanings that are on the tip of your tongue. I now know exactly where my dictionary, thesaurus and recipe books are and I'll flip through every page just to find what I'm looking for. I feel as if I have a disability and it doesn't help when others are dismissive when they say it's all about getting older. I have realised that I must find a way to cope on my own - and my husband takes it a little more seriously now. Good luck everyone, everything is worth a try and in the meantime, my references are nearby as I learn my limitations.

 

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An anonymous caregiver answered...

I also had a double mastectomy. I was treated for 6 months (every 3 weeks) with an aggressive cheno protocol of adriamyacin and cytoxin (3 mos.) and cytoxin, methotrextate and 5FU (3 mos). I was in bed for 5 days after each treatment and had really bad short term memory issues and concentration issues during chemo. I had to line up pills because I couldn't remember from one second to another whether I had taken them. And I couldn't get through a full column in a newspaper even though I have always been an avid reader. This was 18 yrs ago. The symptoms gradually improved after chemo. I didn't get back to full time work for more than a year, partly because my employer had terminated me when I couldn't work during chemo. For several months after chemo ended, I still had severe endurance issues and short term memory issues, although not as bad as when I was in chemo. It was a struggle. A few months after chemo ended, I started doing a few hours of volunteer work a week to test my body and mind. I had to push myself. A couple months after that, a friend offered me part time work for a few months which helped me and then after a few more months, a previous boss offered me a job which was initially contract part time work which led to full time permanent employment. I'm forever grateful to her because I don't know whether I would ever have gotten back without that opportunity. When I say I got back, I still had endurance issues which took a long time to build, and I always wrote down everything for fear that I wouldn't remember. And, when I first started to work full time, I occasionally had to take a day off just to stay in bed all day to recuperate. When I started tamoxifen, depression set in and eventually got worse.

Chemo brain is very real, and I had endurance issues for years after the chemo. I never got my full endurance back but I feel that I did get my full brain capacity back after a few years. Stress probably was the biggest factor affecting my concentration.
The primary reason I'm responding here is that your description of "cannot concentrate, get over stimulated easily, poor short term memory, difficulty finding words "¦.difficulty expressing "¦.no concept of time and cannot multi task "“" more accurately describes a condition which I had diagnosed 10 months ago which can be caused by chemo--cardiomyopathy, a weakening of the heart muscle. Have you had an echocardiogram? PLEASE GET YOUR HEART CHECKED if you haven't already. When I experienced chemo brain, I didn't experience the intense anxiety nor the lack of concept of time that I have had with the heart problem. Because of the length of time it has been since my chemo and the fact that my heart was checked after chemo, this diagnosis is not being attributed to chemo in my case. I don't know what caused it. Last year I had been taking an antidepressant that is also used for pain when I started having the symptoms. It concerned me that they were even worse than when I was under chemo because of the anxiety and lack of time concept. I stopped taking the antidepressant because of its side effects. Short term memory issues followed by severe anxiety and lack of time concept continued. No amount of organization seemed to help and I had to write notes to remind me where my "to do" lists were. Eventually I felt a tickling in my heart area, just days before I ended up in the hospital.

Don't let the side effects of chemo stop you from looking at other causes for symptoms. It's a problem because the side effects of chemo can mask other problems. The only other condition I eventually learned I had that creates bad short term memory and time concept issues, but not anxiety, is sleep apnea. I didn't have this diagnosed until just a few years ago, but I couldn't seem to even make coffee in the morning without either forgetting water or coffee grounds. And I would miss my exits while driving and I once left my car door swung open in a parking lot with my laptop in the car.
I feel that the impairment to my body from chemo prevented me from realizing when other medical issues were arising. Cancer was always first and foremost on my mind. Both sleep apnea and cardiomyopathy are very serious health issues, and I would hate to see anybody else make this same mistake. It's important to fully explore all possibilities.

 

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lookyloo answered...

Here's one from a wife who's husband was diagnosed with stage 3 colon cancer, 2 terrible surgeries to remove tumors and sections of colon. He has been through 2 different kinds of chemotherapy and still needs another round, but has to hold off until Medicare will approve of a 3rd CT/PET so the oncologist can see what the remaining 2 affected lymph nodes are doing. Now we have to wait until next year for that to happen. Well, this doesn't have much to do with Chemo Fog, but he does get it once in a while and I know I should not get frustrated but I do and feel really bad when I get on to him for saying stupid things or not remembering, etc. Sorry is a word that is getting old and I hope if any of your partners or spouses do this too, we haven't put ourselves in your shoes and we as care givers get really tired, scared and worry a lot plus neglect our own health. It's difficult for everyone. Bless all of you and may God help us find a cure for all cancers and diseases. Best of luck to you all.

 

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A fellow caregiver answered...

I can totally relate to the person with "chemo-fog" I went to the doctor in mid 2000 for what I thought was either gallbladder or problems with my mitral valve prolapse. I had this pain right under my breastbone. The test results showed I was anemic. I knew I was tired and thought I just needed more exercise. I went for a routine colonoscopy (my grandmother died from colon cancer) and they found a cancerous polyp. I had surgery one week later and through the biopsy discovered it had spread to the lymph nodes. I had the usual surgery and it was suggested for me to have 24 treatments (weekly for 6 months) of chemo-therapy. I researched everything I could on the subject and of course friends brought over everything in the book about alternative treatments. When my mother was diagnosed with lung cancer we tried alternative methods and they did not work, so I had lost my faith in that procedure. I chose chemotherapy. I have a very supportive husband, but I chose to do this myself. I drove one hour every week for my chemo treatments by myself. Was there side effects. Yes! Sometimes I would have to pull off the road because of nosebleeds, or to just rest. I could not taste food. I had unreasonable bouts of anger (I still cringe when I think about things I said to people) I started experiencing pain in my hands. I had chronic diarreah. I was told that the chemo exits through your hand and feet and thus the problems. Brain-fog, yes, but if you are killing off cells good and bad isn't it reasonable you are also killing brain cells. But we only use a very small portion of our brain anyway, so I figured I would use some of the brain I wasn't using. After chemo, my anxiety and anger continued so my medical doctor prescribed Zoloft and that helped tremendously. The pain in my hands in feet steadily has gotten worse over the last nine years. I was a paralegal but can no longer use my hands efficiently enough to work and I can barely walk on one foot. I also, some days, think I have early signs of Alzheimer because I forget simple things. I used to be so smart, but I am alive and enjoy each day as it is and I am thankful that there is a choice for us to make whether it be chemo or other alternative treatments. There is help. I pray and thank God daily I had a choice.

 

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dreamkeeper answered...

There are so many variables when it comes to cancer and chemotherapy. Variables also lie in oncologist's opinion on the method of treatment as well as the strength of the chemotherapy administered. In my case, diagnosis of breast cancer, followed by mastectomy and choices of treatment were all discussed thoroughly with me. I felt informed which alleviated a large portion of the fear that arrives with the diagnosis. Just a year prior to my diagnosis, I lost my husband to pancreatic cancer. Using my experience with his medical care really helped me make decisions. Chemo-brain is a real condition and I think the way a person approaches the recovery is important. In August 09 it was one year since my last treatment. My short term memory is still bad, I still have no feeling in my fingertips and my energy level is slowly increasing. The thing I found helpful was to realize that these conditions may or may not get better and life was still better than the alternative. My pcp prescribed Zoloft after my husband passed and I found my depression and grieving getting worse as time went on. To this day, I still take Zoloft and I feel like at least eliminating one condition helped get me through the others. For the person who asked, dwell on the fact that survival is a Victory for you and regardless of how long the conditions last, you are here for a purpose and need to enjoy life. If we can help in any way we can all bond together to share information. I find if I give in to being tired and just get all the rest I need without the guilt and questions, each day is better. Take care of yourself, you are important.

 

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colours answered...

11-9-2009

I was diagnosed with breast cancer 20 years ago last October. I had seven-lymph node involvement & a radical mastectomy. I had surgery first, chemo for seven months, & radiation therapy for two months. I had no tamoxifen ever nor any other medications. I had brain fog, yes, but over the years, it has decreased & I can still work as I have to work & I can do accounting & budgeting work just fine. God is good!

 

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Blessedxxxxtimes answered...

I am a 10-year breast cancer survivor. I started chemo in November 1999 and had four rounds which ended in January 2000. That chemo was not as hard on me as the chemo I had in September and October 2005 for thymus gland cancer. I had the chemo before surgery, but the tumor did not shrink. It was also a different set of chemotherpy drugs. I had 28 radiations after my December 2005 surgery. I, too, suffered from "chemo brain" this time. I went into respiratory failure during surgery and was on a ventilator for 5 days. My memory loss was obvious with this last episode. However, I have been able to remember a lot of things now that I had difficulty with earlier in the illness and treatment. I am not nearly as "forgetful" as I was. As time went on, it got better for me.

 

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An anonymous caregiver answered...

I am male. 56 years old and currently surving stage 3+ melanoma. Had 30 days of infusion five days a week followed by three days a week injection of chemo for 12 months. I know exactly what chemo brain is talking about. Doctors had no alternatives to correct "chemo brain" or this initial "fog". I tried Ritalin, but realized I was taking drugs to counteract drugs. I cut back to just the chemo, lexapro and anti-nausea. After three months I only took the anti-nausea drug the day I was injecting. I've been off chemo six months. Still have trouble focusing. I was hyper as a child, and thought the fog was part of that come back to haunt me. I suffer from CRS (can't remember squat) I use technology to replace my memory. Everything goes on my PDA or on my notebook I carry around. There is no old normal. Only the new normal. There was a "lifting" of the fog in a sense, but I am still adjusting. I can't tell "Chemo Brain" when it will end. All I can say is we have to adapt. Good Luck!

 

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WeeLee answered...

I was diagnosed with stage 2A breast cancer in Feb 2007. Went through 2 surgeries...lumpectomy and modified mastectomy w removal of 20 lymph nodes on R side- only 2 were positive. I alsow had 2 frozen shoulders at the time of these surgeries. I found 1st that the steroids affected me horribly. Each surgery got 250mg decadron, got 2 shots of steroids in each shoulder blade, then had a port inserted with another 250 of decadron and started the prechemo use of decadron. On the 2nd round of chemo A-C-T had an anaphylactic reaction to the taxotere.pumped full of steroides and benedril to counteract the reaction then went through another rechallenge...had another anaphalactic reaction more steroids and benedril and after this 2nd round could not remember which drugs I used to talk to Doctors about (I was a pharmaceutical rep) I could remember drugs from 18 years ago...but not the ones I had prior to going on STD. The 'brain freezes'continued to get worse...word retrieval, spelling, could not read anything ( and I was an AVID reader) there was like this block when I opened up a book to try to read. In 2 3/4 years I have been able to read one book- on the use of steroids in baseball. My oncologist really wasn't any help - he was more concerned with what treatment he was going to switch me to after I refused to be predosed with 2 times the amount of steroids due to the allergic reaction. So placed on another regimine and now after 2 had to have 4 more until I had double pneumonia, atelactesis (lower lobes of lungs collapsed due to chemo) and pleurisy. Sent me to a psychiatrist who said give it 6 months, then 12 months then manybe never. I had 2 prior concussions, one when young, the other at age 23 and she felt there was brain trauma brought on by steroids and chemo. Was accepted by SSD and my LTD until 2 yrs were up then they started questioning the chemo brain as possibly being depression and anxiety. Noooo...the depression and anxiety comes from the changes in the way I can relate to people. I used to be quite at ease in front of 30 cardiologists giving very technical discussions on cardiac drugs aand now I had to play "charades of the mouth" to get people to understand what I was talking about. LTD extended last week due to finding I have 2 herniated discs at C6 C7 and C5 and C6 and on my own with help of my PCP have gone through a Neuropsychologist's 6 hour testing to find an answer. I loved my job. I was very good at it. Now I am happy if I can complete a whole sentence without stumbling on a word or two. Oh yes and I feel like I can't sit still...like I have severe ADHD, No multitasking and I was the Queen of multitasking...so it will be interesting to see what the resultsof the neuropsych testing is. I have heard with cases of chemo brain...this is the way to go because they are the only clinicians who look at different types of your intelligence strengths and based on where you scored in something can project what you should be scoring in another category - like short term memory...I was embarrassed at those parts of the tests. But the test is geared to show certain discrepancies and I knew there were certain ones I aced. The best thing is to do your best...that is the only way they can tell where the possible problems are. This is an up and coming field. They did not think yrs ago that chemo drugs crossed the blood brain barrier (the protective lining of the brain that keeps potentially toxic things we take in from harming brain cells. They now realize that certain chemo drugs do indeed cross the barrier. My question is why is it I can type or write with no hesitation but speaking is like going fishing for words - thus the charades. I hope everyone on here finds the answers they are looking for and excuse my spelling...that is another thing that was affected. Oh and I went through 36 days of rads and that seemed to make it worse. Rest assured, this Chemo brain phenomenon is being researched and hopefully they will be able to pinpoint which drugs are most toxic and what can be done to counteract the toxicity to the brain. Take Care All

 

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chemobrainruth answered...

i just wanted to make a remark or two concerning chemo brain/fog etc..(by the way...i was thrilled, though saddened, to hear of others who experienced the same crazy symptoms!)....the facts about me: breast cancer IIIA diagnosed 12/07 at yearly mammogram..call-backs etc. finally resulted in ultrasounds, etc...large-core needle biopsy diagnosis of tubular carcinoma tumor...invasive ductal carcinoma as well as some lobular invasive and lobular in situ etc. etc. ..anyhow, lumpectomy and sentinel node biopsy..all nodes taken were positive.. oncotype test showed high hormone responsiveness and her2-. ...oncologist called for conservative treatment. he didn't think it was prudent to use "broad"-scale" assault of chemotherapy. i wasn't comfortable. my husband (who accompanied me to that visit ...his only visit to doctor with me during the initial stuff - men can be "chicken" sometimes!- suggested that we go to UAMS in little rock for second opinion.
second opinion: chemotherapy right away!!! mastectomy to follow. (cancer found in all axilllary lymph nodes which were removed with surgery..stil watching spot on my lung).

so..TAC every 3 weeks for 6 months. (i was very lucky. chemo sapped my energy and i struggled with reactions to zofran, etc., but i did very well during chemo.)

i chose double mastectomy, followed 3 weeks later by initial reconstruction/expander placement. (september 08).

all i know is that hallowe'en 08 is a totally forgotten day for me. the chemo brain/fog was very obvious to me at the time. blamed it on anesthesia/surgeries. also, stress related due to problems with marriage. (extreme problems!!! with husband and what i allowed and encouraged during that time! wish i could go back and change the things that i allowed and encouraged!! i effectively cut off my closest support system thinking it would help him to "deal with" the cancer!).

so..brain fog: darn it!!! i have been declared "cancer free"! whoo hoo! in the meantime, i have had to work, very hard, on restoring my marriage and my family relationships. the stress of all that, plus the depression, plus the physical trauma were easily blamed for the "chemo brain"

also, took lyrica for neuropathy in my feet and on my scalp. (it helped! ). i spent several months on lyrica (post chemo/mastectomy etc) thinking that anesthesia and lyrica were to blame for the nutty things happening to me.

most signifigant: the loss of concentration, the inability to focus, confusion over time/day/date/year, and complete loss of memory in many categories.

oh! i should mention that, pre-cancer, i was one of those "lucky/blessed" people who always remembered everything!!! including names of everyone i meet, even those random introductions at cocktail parties etc. we have a small cafe, and i used to feel such pride in recognizing our "regulars"!

now, i carry sharpie-pens in my pocket at all times, and i write stuff on my wrist or arm so i can remember what i am doing. i have two watches. i carry two cell phones-both of which have alarms set to alert/ring on the hour, every hour, during the day. the alarms help me to remember to look at the clock and ensure that i pick up kids from school or remember to go to work, etc.

yikes! makes me insane (and depressed!!) to deal with the loss of short term memory and the confusion over time/dates etc.

enough rambling...i just wanted to let someone know that i experienced soooooooooo many symptoms that i have found in this site! i am so pleased to hear uplifting stories!

yes, i have seen psychiatrists. yes, my oncologist is very aware of chemo brain (prescribed provigil to help that and to help the insomnia/sleepiness cycles - which does help, by the way, despite being very expensive~!)

long term prognosis?: maybe i am being too impatient. i have been finished with chemo for 15 months now. scary to imagine living like this forever. my former mental sharpness is gone forever, i fear.

however, glad to be alive (yada! yada! yada!). but, i cannot wait for the return of my former mental acuity. or at least the return of my ability to know what day it is or what month it is, etc. hee-hee!

i think i'll keep the insomnia! it gives me lots of time to do laundry late at night and to read things like this on the internet!

anyone struggling with lack of focus , etc...? consider asking doctor for provigil. and take those b vitamins!

in a depressing post-script: i have never posted any sort of blogs/comments on sites before tonight. it is liberating! i can freely say that i hate breast cancer and that it has done nothing to make me "stronger" and it has destroyed my marriage and it has both scared and scarred my kids and it has harmed our business and it has been a horrible thing for us!! i am looking forward to having this in the rear view mirror! it is good to know, in some sort of warped way, that i have to wait a long time for the chemo-brain/fog effects to be a memory rather than an everyday challenge. thanks for all who shared!

 

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Janice2215 answered...

I fired my "o" doctor she was acting like a used car salesman and joined the hospice. Best thing I ever did. I finally got a few answers but more importantly I joined the God group too. Such a weighted question was lifted from me and my family. We laughed.... more ...then we cried. Our answers were no longer so important. Like putting a baby's hand in your own and loving the wonder of it. I pray for all of you. I have had cancer for 2 years and my wonderful husband was just diagnosed. I am so blessed. We tend to forget that the gift of life is just that a gift, we don't know the long or short of it ... But it's a wonderful gift. Jan

 

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octoman answered...

Janice 2215 Found you at last.yes god is so important but religeon can confuse people,you do not go to chuch to find god,he is freely available for our use love,will find the way nothing against church if it helps but called or not called god is always there prayer helps. After 7 years my cancer has not spread,but it has gained in size At last I am intitled to chemo. I looked at the side affects, and the success rate I am well and happy.why risk chemo?and it is a risk in my case. so will refuse chemo,my surgeon will be disappointed,I will not see the chemo man.he was a lovely man.I told him he was the only surgeon so far I trusted,we talked about our beliefs in the same god, That is how consultation should be,inspiring,love you all.

 

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donnaj answered...

I am a marketing professional who has done a lot of research and writing in the area of healthcare, pharmaceuticals and now, cancer.

Recently, I have had the opportunity to do research for a cancer patient who is suffering from the side effects of chemo for treatment of anaplastic astrocytoma Phase IV, which has left her debilitated and in a wheel chair. She is 30 years old and the mother a little girl.

Did you know that in Germany, they offer chemotherapy sensitivity testing? However, this is not common practice here in the United States. It appears that sensitivity testing would be Step One to find out what the prospective results of chemo might be.

Suzanne Somers writes about alternative and complementary methods of treating cancer. I would strongly recommend reading about: Drs. Burzynski, Forsythe, and Gonzalez if you haven't already. There is a plethora of information out there that negates or offers hope for those who are considering chemo or...who have become debilitated from chemotherapy. Please investigate these thoughtleaders in cancer treatment--many of whom have not only dedicated their lives to cancer treatment with the traditional standard of care in cancer,cancer research, and nutrition, but have also decided to seek alternatives when clarity has not readily available.

It is important to take control of your own healthcare and not accept the standard physician response as "bible." Seek out answers for yourself. Donna

 

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WeeLee answered...

I have been re-reading all of the responses on this site today, and am now thinking of changing my "O" doctor. The thing is that he is chief of Oncology at the mid-size hospital where I went for chemo treatments every three weeks for 5 rounds-supposed to be 6 but developed chemo-related complications. Then on to rads for I think 36 rounds. My take on everything after reading this is that many "O's" only really care about "outcomes" the number of patients that survive beyond 5 years or not. That is their main concern...not really side effects of the drugs whether it is allergic reactions or chemo brain, or severe lymphedema, etc. Their concern is survival...period! So I now think that if we find ourselves with an "O" who just can't grasp how our lives have changed...who gives us the'well, you are alive' (which is true and for which all of us are grateful) but many of us are not the same person who entered treatment...and that is the point. Some physicians are just not capable of really taking in the whole picture of cancer...for that they rely on support groups, Rx's to psychiatrists or psychologists, etc. I wonder how many "O's" have done any type of research on the phenomenon called chemo brain..I am talking just looking on the internet. Now, how many do you think feel it is necessary to start aiming cancer research on some of the debilitating mental consequences of chemotherapy. I know what percentage I would say...and it is not too high. Yes we go on...yes we are thankful to be alive...but my 5 year old grandson sees a different "gammie", my 2yr old grandson never knew the 'before' gammie nor did my 1 1/2 yr old grandaughter, nor my 1 year old granddaughter, nor my 6 month old grandaughter...nor will my daughter and son-in-law's unborn child expected to enter this world in February know their "before" gammie.

 

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octoman answered...

i READ THE TERRIBLE TROUBLES PEOPLE HAVE WITH CHEMO WHO WILL STOP THESE LOOSE CANNONS OF CHEMO THEY BLINDLY GO WHERE WISE MEN FEAR TO TREAD . PEOPLE WITH CANCER ARE SO AFRAID TO REFUSE TREATMENT THESE DOCTORS ARE NOT GODS THEY ARE HUMAN DO NOT TRUST THEM GET SECOND OPINIONS IGNORE THE LONGER YOU LEAVE IT PLOY . THE SALE ENDS TOMORROW YOUR LIFE IS IN YOUR HANDS

 

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A fellow caregiver answered...

I know it is a very raucous experience and frightening. I accompanied my father and mother both. They are survivors but it just about killed them. The saddest part is that it came knocking on Dad's door for his eightieth b-day. Mother experienced her's in the 70's and it wasn't anything sophisticated. The sad part is the technology hasn't really advanced that much. Their symptoms were always thirsty and feeling rotten and stupid. It can be compared to having a concussion. One day you are putting the coffee grounds in the refrigertor, or your sense of hearing has become as keen as a dog. There are many facets to this, so remember you took the poison and there is no handbook. But the supposed upside is no pearly gates. Having said that, it is definitely a time to count blessings and not complain. Move on and live with it. Get back on the surf board after the shark attack. Get out of the wheel chair and use the prosthetic legs. Start eating different food, exercising and using your brain. We all are our own worst enemy. When I have to deal with people who I call Hurdlers, I avoid the topic of their defect. My goal is to find something congenial and delightful to engage in and intellectualize with and about. Go in peace and God Bless. The price of gas and all, the bus is ok.

 

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Blessedxxxxtimes answered...

I had chemo - 4 rounds from November 1999 to January 2000 ( for breast cancer). I had it again September 2005 and thru October 2005 before surgery for thymus gland cancer. I did not know what was wrong with me. I thought I was getting Alzheimers. I was forgetful. I would be talking and in mid sentence would forget a common word or term. Eventually I might remember the correct word to use. Family members have mentioned something that they think I should remember. Some memories have come back and a few others haven't. Sometimes, if I ponder long enough, I remember. It is not as bad as it was. I was told when I had my hearing checked (by a specialist) that chemo may have caused the hearing loss in both my ears. It helped the cancer but may have caused other problems. However, it beats the alternative.

 

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An anonymous caregiver answered...

Hello everyone

As well stated above, chemo induced cognitive impairment is real! They state it can persist up to two years but as long as 10yrs I have received treatment not once but twice in the past 16yrs (most recent two yrs ago)and now being 54yrs of age still need to work. This is complex as trying to be detail oriented, exact in verbalization, and just being "on" is very difficult at times. Since they have yet to nail down the "exact" cause treatment is non specific.

I find this both concerning and scary given the number of individuals circulating in society with this "syndrome"

Also are "we" able to receive disability as we could be at risk of harming others in our jobs? Are there any clinical trials out there that we could participate in?? I think that I speak for all who suffer from CICI we need some type of treatment soon Thank you all for sharing your most personal experiences D3

 

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So it is brain fog that I have? Had a lumpectomy in February 2004 on my left breast. Took a couple of lymph glands too but they were alright. 30 sessions of radium treatment followed. Went regularly for checkups, such as colonoscopy and trachoscopy "“ told I had metastatic breast cancer in my right lung and had six months to live.. September 2 2006 found myself taking 4 Xeloda tablets twice daily but by 6 December I had difficulty in walking and was breathless. Found to have developed deep vein thrombosis; taken off Xeloda and put on warfarin. May 2007 - had the lining of my lungs relieved of the water (700 mls), just a few mls less than a bottle of whisky! I was due back at work but found I could not make it, I was so short of breath. Diagnosed with chronic heart failure and realised that at age 68 I had overstayed my welcome and retired..

My husband had passed on in April of 1999 and I had to go through all of my cancer treatment on my own. I saw couples arriving all the time I visited the Oncology Department, couples came together to the day ward where I had the colonoscopy and the trachoscopy. Every time I went for treatments I made as if I was taking my husband with me, I'd talk to him along the way and ask him to be by my side as I underwent the treatment. I am sure he was with me as presently I am in remission though cannot concentrate for long periods. After five hours of being awake I need desperately to sleep but at 1 am in the morning I am surfing the net!

I live in Sea Point, a suburb of Cape Town, South Africa and if there are any others living near me who have the same conditions that are my lot, I would be more than pleased to get together with them. Two or three heads together over a cup of tea or coffee to meet and discuss our lives, children and grandchildren would be so comforting.

To all of the others on the other side of the World who appear on these pages, my thoughts are with all you brave people. There is a purpose in still being here, may our fogs lift and may we be seen as worthwhile in our communities. I wish you love and light.

rkroot@worldonline.co.za

 

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WeeLee answered...

For those of you who have cognitive problems (chemo brain) which have lasted beyond 2 years post treatment I would highly suggest making an appointment with a NeuroPsychologist. I posted on here several months ago about my situation and at that time I had made an appointment with a NeuroPsychologist who I saw in November of 2009. As a reminder my cancer was diagnosed in March 2007, Lumpectomy, modified mastectomy, chemo then Rads. The testing with the Neuropsych took over 6 hours and some parts of the test I felt were easy and some almost drove me insane! I felt like Alice free-falling down the hole! I had no idea of the answer to her questions and no idea how to retrieve anything close to the answer. Like I said several times I was embarrassed because I was so high functioning before, but I kept trying my best. I wanted to rule out early onset dementia and alzheimer's. What the results showed were very very interesting. I had my son-in-law, who has a Doctorate in Psychology explain them to me. The results were listed on 2 1/2 pages separate from the Neuropsychologist's interpretation of not only the results but the whole experience, ie, effort extended on my part to do my best (yes), mental status, ie, did I exhibit signs of depression (yes, but only when I talked about my prior career (pharmaceutical sales, training, recruiter and national convention delegate) and how much I missed it, signs of distress at not being able to "find" an answer, signs of no longer being able to multitask (yes there are tests which measure this), distress at not being able to remember words spoken to me in groups of two's, etc. Overall the testing showed I was Deficient in 6 categories (usually associated with short term memory, both verbal, written, and spatial) ...interestingly I was superior in auditory memory ( when I told her I played piano by ear since age 3 as well as could figure out how to play any instrument given to me within about 15 minutes, she understood the connection) I was low average in 11 tests, Borderline(which is just above low average) in 4 tests, average in 14 tests, High average in 9 tests, and Superior in 2 tests. Overall, this testing helped me tremendously, by being able to place what I perceived to be my "impairments" into perspective. It showed me that yes, I lost some cognitive function in areas where I used to excel, but I also maintained some function in certain areas. In other words, I am Not the same person I was 3+ years ago, before my diagnosis and treatment, but I found I had areas of strength that I never knew I had. I am just.....changed! I still have problems with word retrieval and short term memory...and I would not be able in any way to go back to my prior career, or any other position which necessitates any type of "executive functioning"...but I learned that too many times we place far too much of our self value on 'what we do' rather than 'who we are"!

 

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An anonymous caregiver answered...

Welee...You have said what I also feel. I am not out to blame any oncologist. For many years the goal was saving lives. But now they have gotten better at that and a great number don't want to acknowledge the long term side effects we chemo patients are dealing with. I personally have the greatest difficulty with chemo induced cognitive impairment (chemo brain). This was documented by a neuropsychologist my disability company sent me to. I also have lesser, tolerable numbness in hands and feet, chest pain from the surgeries, less stamina, dizziness, insomnia,ect. But the oncologist does not pay attention to these complaints...even though they have a "behavioral oncologist team" they have sent me to to help with the chemo brain and have given lectures on it ?!? It is very frustrating. I am so tired of being so dependent on others, since I can drive very little now. I never thought this would be a complication. Although I have said if they put it on a the long list of complications, I could never have imagined what this chemo brain is like...it is so indescribable to describe and understand what goes on in my brain. And there are better days and worse days with no pattern. I have tried finding studies because I want to help with the research on this side effect, but have had no luck. I figure if I have been given this cross to bear, I want to help the future generations deal with it. I LOVED my job and have been unable to work since developing the chemo brain. I desperately want to go back and get up every day thinking it will just magically disappear. But it hasn't yet. So I hear you loud and clear. And the only comfort I get is hearing stories like yours that are like mine. I want to ask Susan G Komen to add this to their agenda, but feel like I can't properly do it. It takes an enormous amount of time and spell check to do anything....if it wasn't for spell check I couldn't post anything! So I feel we can only be here to support each other right now. And hope Rochester University keep their studies going. My thoughts and prayers are with all my fellow sisters (and brothers) who are dealing with this too. God bless you all :)

 

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shelbyzgrammy answered...

I am not having the best brain day, but something bothers me and I want to know if I am the only one. A lot of time when I see people who are usually in more of an "acquaintance" category. They ask how I am and if I'm back at work. When I try to explain I haven't been able to return due to my "chemo brain issues", they look at me like I'm crazy or something. People who don't see me on a day to day basis seem to feel there's nothing wrong with me. Sometimes I want to scream...I wish I was the same, I WISH SO MUCH I COULD RETURN TO MY JOB THAT I LOVED, I hate being dependent on others at my age because of having problems with memory, multi tasking, planning, etc. Is this an experience any of you all who have the chemo brain (CICI) have had?? If so, any suggestions on dealing with those comments?? Thanks :)

 

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An anonymous caregiver answered...

Look for a link to the internet on one of ChemoBrain's posts and read the article. For anyone who was placed on 5-FU. I was placed on a coctail containig 5FU after I had an allergic reaction x 2 during my 2nd round of chemo on Taxotere and was then switched to another 'cocktail' containing 5-FU for 4 more rounds...until after the 2nd last treatment had pneumonia, two lower lobes collapsed and also pleurisy. My oncologist decided 2 days before my last treatment ... to cancel it.

 

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LizzieB answered...

Hi, just a quick note. Chemo brain is real. I am participating in a study to help improve brain function. My team is going to present their findings this year. It's a web based brain training exercises and, after 2 months of training, I can say that I have had a couple of days of what I call 'clarity'. It's like getting your old self back. But not quite. I think the first thing to do is to accept that we are never going to get back to 'normal'. We will be different, but we will be able to function - eventually. The question is, how eventual is eventual. I finished chemo and radiation three years ago. For anyone's information, here's the web-link to the study here in Sydney, Australia. http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=74&abstractID=48655

Hope this helps.

 

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DEAN ALLAN WIEGERT answered...

DEAR READER,

I AM A CANCER SURVIVOR OF 1 1/2 YEARS OF COLON CANCER,AND I AGREE WITH EVERYTHING THAT HAS BEEN STATED IN THESE ARTICLE'S ABOUT CANCER AND THE SURVIVAL ASPECTS OF CHEMOTHERAPY. I TO HAVE THE CHEMO BRAIN AND IT IS VERY HARD TO CONCENTRATE ON ANY ONE THING THAT COMES ACCROSS MY MIND. I HAVE EXTREME PROBLEM'S WITH CONCENTRATION ON ANY TOPIC. THE CHEMO BRAIN SYMPTOM'S ARE DEFINITELY THERE,LEAVING ME IN A PRETICULARLY IMBARISEING SITUATION'S,SUCH AS SOMEONE WILL TELL ME TO DO SOMETHING FOR THEM AND FIVE MINUTES LATER I HAVE FORGOTTEN THE WHOLE CONVERSATION,WHICH LEADS ME TO BELIEVE THAT SOME OF US ARE EXTREMELY DAMAGED WHEN IT COMES TO THE THOUGHT PROCESSES OF THE BRAIN. I WISH THIER WERE A GROUP SET ASIDE JUST FOR THIS TOPIC. SINCERELY, DEAN ALLEN WIEGERT

 

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shelbyzgrammy answered...

To the last post by anonymous...I know it is a very raucous experience and frightening... While I partially agree with your post, I also strongly disagree with part. Yes, we took the poison with no handbook...well actually a partial handbook was provided that was very thick and included almost every body system side effect and the side effects could be totally different ie diarrhea or constipation. I did not anticipate any reaction this severe lasting 2 years out. That being said I don't blame anyone, just think we need further research on dealing long term with chemo side effects. And I don't consider that statement to be a negative one(complaining). I consider it PRO ACTIVE to help the next generation, just as many gave their lives to help us to survive now. And I probably (sadly) would have given someone the same advise as you have before I, myself, was faced with this. But to tell someone who's brain function (or other body part) is SEVERELY affected to move on is very judgmental. Do you not think we WANT to move on ? I want that more than anything and have tried all the things you suggest, diet, exercising, brain exercises. But it has not been a cure. And that is just the way it is right now. I live everyday with the plan that tomorrow I will wake up and my brain will be healed. I desperately want to return to work. I have no desire to change many things I have learned from this cancer journey and am VERY grateful for the life lessons I have gotten....like being less judgmental of someone who's shoes I have never walked in !! It is actually comforting, encouraging, uplifting, etc to come on this site and see I'm not alone (although I am saddened I am not the only one affected in this way). I don't feel this site is a complaining site, instead it is a positive site to give support to one another to keep on keeping on until we are better or until we have more research done. So I am sorry to respond in this way, but you have hit a nerve...that if you REALLY want to be better, just be better. Well, I can tell you as many on here also can, it just doesn't work this way. But I do understand why you think this way because for about 50 years I did too !!!

 

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WeeLee answered...

I agree with ShelbyzGrammy in her analysis of the poster who talked about "Hurdlers" and how he/she avoids talking about their "defect" so as not to have to deal with that topic. When I first read that post several months ago I wrote an answer to it that I decided not to send...because when an individual has that type of mindset about the problems cancer patients as well as other patients going through tough times go through,...very little can be said to change that mindset. Suffice to say caring for patients is NOT the same as being the patient!!! In other words you can't walk in someones shoes until you take off your own! I also was a "carer" having 2 parents with melanoma, one of which I was very present in their care..the other developed melanoma during my cancer treatment period...I also have a brother who had prostate cancer as well as melanoma. So...three out of 4 in my immediate family have had melanomas and I have been told after having breast cancer, chemo, rads, lymphedema, etc, that I have a 75 to 90%chance of having a melanoma also. YOU DO NOT KNOW what the whole scope of facing a cancer diagnosis plus the treatments plus the aftermath of treatment is like until YOU go through the whole process yourself. It is not your life on the line when the cancer patient is a mother, father, sister,brother, etc and for you to come on this site that is meant for cancer survivors whtn YOU ARE NOT ONE YOURSELF...is quite presumptuous! Caregivers have their own host of things they go through, some of which are quite daunting and debilitating in themselves...but it is still NOT the same as being the one who is diagnosed....and with your "hurdlers" mindset...you are the type of individual I would walk away from cause you just don't get the point that many of us on here were very high functioning individuals who had careers we loved and would have done and have done everything to try to get back to them if we could have.

 

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Wings Of Hope answered...

Greetings: I am a 7 year Breast cancer Survivor. I still have the "chemo brain/fog" Unfortunately when I talk to my doctors, I get told that I am just depressed and need to see a counselor, I even fired my primary doctor recently because she told me I was pyschotic! Back in September 2009, I had a 23 hour sleep study done and it showed I don't get restful sleep and I also can sleep anywhere from 10 hours to days. I have Hypersomnia. It has been going on since chemo and radiation. I finally found a primary physician who listens to me and is managing my 7 other doctors that I see. In 2003, the Oncologist Nurse said she has been hearing more and more people complaining of the fog, cognitive problems, driving and forgetting where they are going, worse yet in my case I couldn't find my way home in the neighborhood I grew up in. Now finally there is hope for us. Sad part is disability fights real hard in saying "it isn't that bad" for you not to work. We all must contact prominent Cancer Hospitals, let the Cancer Centers know how devastaing the long term effects are. A good form letter with details how damaging Cancer and treatments have been to you. Best wishes.

 

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Carol N. Canady answered...

I have read these posts with great interest and realized (once again) just how blessed I have been. I had stage IIIB breast cancer this year and had both breast removed. I have one more chemo treatment next Tuesday. My oncologist is the best I have ever seen. He knows exactly what the side effects of chemo are and has always been there to answer all our questions. I have not been sick one time since beginning chemo. My husband had kidney cancer in 2009 and did not have to have any treatments as it was in the kidney linning and they removed the kidney. He has been my "Rock" and has gone to every Dr. App. and treatment with me. Yes, I have some "Chemo Brain" as I can't always find the word I need or call the name of something. We try to make a joke out of it and move on. I am more tired after the fifth round than I have been and my oncologist tells me that is because of the build up of chemo. I still have to have the second stage of breast reconstruction and 33 days of radiation. What has helped me the most during this walk is my faith in God. I know that he will get me thru all of this and I am completely at peace with whatever his will for me is. No, I don't have the energy I used to have but I am so thankful for each day and the joy it brings me. I pray that all those posting will find the peace I have and wish all the very best of luck.

 

coedmom answered...

I, too, am a breast cancer survivor. I had a lumpectomy and lymph nodes removed in 1/09 followed by weekly chemo for 4 months, then daily radiation for 2 months. I am still experiencing MANY side effects from all of the treatment and accompanying medications. I work as a special education teacher, so the chemo fog brain is a real issue with all of the legal implications that could arise. Recently, my family doctor started giving me Aricept, an Alzheimer's drug, and after 6 months of gradual increases in the medication, it seems as if I am having small triumphs of memory returning. I can remember an instance but not when or where it occurred. Even this small amount is a blessing! Most of the time, I can't remember what I did yesterday. I found keeping a notebook with me all of the time has helped tremendously too.

I feel blessed that I am still here to see my grandchildren arrive and grow and to still see my own children become adults in their own households. Never give up the fight!! Keep using any and every hint to your advantage!!

 

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An anonymous caregiver answered...

This is off the original subject, but I can not find a good answer on this site (Caring) to my question. And since there are many cancer patients on here, I thought I would try asking you all. What are your thoughts of a PET/CT whole body scan to check for reoccurrance and/or to at least get a baseline for the future? I am a stage 3 triple negative breast cancer patient who is now 2 years out from chemo (6 rounds of FAC) and double masectomy. I have severe chemobrain, neurothathy, some fatgue, some insomnia and bone and muscle pain among other side effects from what is presumed to be the chemo. Any thoughts would be appreciated. I am trying to get as much information as possible because of the cost of the test. Thank you.

 

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DonnaLou57 answered...

I have had a couple of PET scans and it is a good test for total body scanning. It shows up things that bone scans don't. I am a 9 year breast cancer survivor and right now I am having a lot of muscle pain and bone pain. I just saw my oncologist last Thursday, January 6th, and he is having me get a bone scan, whole body, first. I am a little afraid of what it is going to show, but I really don't want to miss anything either. I fractured a rib the end of October with no apparent reason. Just woke up and couldn't take a deep breath. That is why he is doing the bone scan first. If that comes back negetive then I will have a PET scan. I think it is worth it if you are having pain anywhere and it is new or more severe than it has been. I will post my results as soon as I get them. By the way, I have all of the problems you listed and more. Some did come from the chemo. I will see if I can find out anymore answers for you. You can email me if you would like to. My email address is donnachub@aol.com Blessings, Donna

 

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WeeLee answered...

To Anonymous Re Pet scans: I had 2A ER pos. PR pos invasive ductal carcinoma of R breast with veinous involvement and mets to 3 lymph nodes (they took all nodes (19) on R side in early 2007. Right after my 2nd surgery (lumpectomy then modified mastectomy to clear margins that came back positive on the tumor extraction along with a good amount of surrounding tissue); I had a PET scan one months after 2nd surgery before starting chemo (was clear) and a breast MRI at some point after surgery but can't remember if it was before or after chemo and rads. I too was wondering about future PET scans. For breast cancer patients I think it is standard to have the scan after surgery to make sure no mets to other organs, but I am not sure what the guidelines say ( there are always guidelines for any disease state with recommendations for treatments and testing that most physicians and insurance companies follow...so I would ask your oncologist at your next visit why you did not have one after your surgery or when people with your type of breast cancer are given PET Scans. And if the oncologist does not answer your question ask them "WHAT DO THE GUIDELINES RECOMMEND REGARDING PET SCANS IN MY CANCER TYPE? IF THEY SAY THEY DON'T KNOW...FIND ANOTHER ONCOLOGIST!!!!!tHEY SHOULD ALL BE AWARE OF ONCOLOGY GUIDELINES FOR ALL TYPES OF CANCERS!!!!

 

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ayh answered...

As of today, March 3, 2011 it has been 2.5 years since I finished one full year of chemotherapy. I had three chemo drugs and three pre-meds in each IV every three weeks from June 2007 to May 28, 2008. I had Stage 2 DCIS and also a second tumor found during the surgery for the DCIS, which required a second surgery and was identified as a HER2neu tumor. The cancer had spread to my lymph nodes in the upper right quadrant of my body. My lymph nodes were surgically removed. In addition to the 17 chemo treatments in 12 months, I also had 33 daily radiation treatments. I had six months of physical therapy to regain strength and partial use of my right arm and hand. I struggle still with chronic fatigue...it controls me after an hour or so, and I have to give in. Lie down and sleep. When I awake I feel refreshed now, but this progress just started. For one full year I wasn't able to drive my automatic car at all. I could not stay up longer than four hours at a time. I experienced the chemo brain fog; the inability to think of a word I needed in conversation; I could not multi-task for two years...I have just begun multi-tasking in the past six months. My mind is now clear, and my mind is thinking a mile a minute...however, my body won't hold up and I become totally "drained" of energy, then I become lethargic 'mentally' and can hardly hold my eyes open...so I give in, lie down and sleep for periods of three to four hours. My husband lets me sleep until I awake on my own. I have no trouble sleeping at night after taking two naps during the day sometimes when needed. I am grateful I can multi-task now, I can think clearly now, and that I don't sleep the 12 to 14 hours that I was sleeping, for two full years. I believe I'm building my tolerance to the chronic fatigue by "fighting" the feelings for as long as I can before giving in and lieing down and sleeping. I can drive my car 35 to 40 miles now, but I really get tired and head back home without stopping anyplace until I get home, and then I lie down and feel just exhausted. I know we're all unique and therefore may share some of the same side effects for different periods of time, so I just cling to my Spiritual Program and repeat constantly my Serenity Prayer...and One Day At A Time I give prayers of Thanksgiving to God for all my blessings and I look back where I was from 2007 until today in 2011...and it makes me feel good to be where I am today. I have faith that I will be in remission one day, and if not, by God's grace and His love, I will live with cancer until my time is up to join the angels in heaven.

I now have Critical Vitamin D deficiency and I'm prescribed 50K I.U's once a week to build my Vitamin D back up to a safe level. My bones ache, but I do squats by holding onto our pool table in the game room; performing deep knee bends, and I walk throughout our home and repeat my walks back and forth, this way even on cold weather and days of inclimate weather...it's better than no exercise at all, at least I'm moving. I perform light housework. I starting vacumning four months ago. I can vacumn one room and rest my arm and hand (I'm right handed), and sometimes when I'm resting from vacumning one room, I actually fall asleep...but I couldn't vacumn for two years - so this is progress. I take care of our laundry, change bed sheets, dust furniture and prepare meals..I just can't do all of these things in the same day...I have learned patience (a little), and I've learned to prioritize according to how I'm feeling on THIS DAY...and I only compare today to my past to measure my growth and strength. I love reading and wasn't able to enjoy reading for two years. I'm now back to reading and comprehending what I read in my spiritual materials, the Bible, and several autobiographies of people I admire. I still have difficulty with being in a group of people (small or large group), and there are several different conversations taking place; several different voice levels communicating...it stresses me and I don't want to talk..I am uncomfortable with the feeling and I have managed to not share that with anyone person to person yet...I feel embarrassed and explaining my feelings due to the rehabilitation from two years of cancer surgery, treatments,and physical therapy has frankly gotten OLD to me. I am sick and tired of admitting all this in conversation with anyone...I feel 2.5 years is a really long time and I don't like admitting how I really feel...I usually say 'I'm Good' when people ask how I am...but if they pursue, then I must get honest and say what's really happening in my life with the side effects lingering. I am happy that I now have more energy, I look forward to it lasting longer for me in the future. I was diagnosed as Medically Disabled and that 'bothers' me, I'm just not the same robust, energetic person I once was and that I want to be again. I'm truly grateful for all my blessings. I was always energetic and enjoyed working my full-time job and doing volunteer work helping families with a Spiritual 12 Step Program for their specific needs...I've slowly gotten into helping those less fortunate than I again...but I'm smart enough not to make appointments further out on the calendar than a week at a time, giving consideration of anything on any given day such as a doctor's appointment, a hair appointment, etc. due to my not knowing when I'll crash.

I've noticed that something 'emotionally' affecting me causes me to crash qucikly, just as over doing 'physically' and I believe this too is only temporary and will pass as I continue to live One Day At A Time. I empathize with all others who have endured similar side effects of chemotherapy and radiation. Personally, for me, my spiritual program gives me strength mentally and emotionally. I feel when I'm strong in these two areas, then I experience more strength physically too. I hope my honesty here, albeit painful for me to admit still, will give comfort to someone who reads it and remind them that they are not alone.

 

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KathieL answered...

I had colon cancer, surgery and chemo. It has been almost 2 yrs since my last infusion. I am having problems with nerve pain. I have a nerve in my neck that is so painful I can hardly work at my computer. I have 2 jobs using the computer. This is bothering me so much I can hardly stand it. I am seeing a doctor, however it is not getting any better. I tried 2 rounds of strong steriods. It helped while I was taking the drug. As soon as I finished, the pain came back. Chemo is so evil. It comes back to haunt you and make your life unbearable. I wish I knew what to do!

 

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Trish9402 answered...

Hi, First time User on this site & it's a wonderful site.

I just wanted to comment 2 your post & I have Lung Cancer on the Right Lung I have been going thru tx. (chemo's 5 different one's) since April 2008; (2 yr's 4 mo.'s) I have now been off of chemo for 4 mo. but still on a chemo helpful med. Erbitux (this was also combined with the chemo med's) & this med. is a silent killer. Anyway I feel the same way (excact way)memory,driving etc. it's horrible. I feel like know one understands me, I have driven friends away because of my mood swing's ( not on purpose) but they just don't understand. I askes my oncologist & nurses when will I feel better: their answer it takes time & it will happen. Frustrated to the core, sad lonely but I do have good days of energy, happiness, joy; I can enjoy these day's with my friends then boom Bottem out! I am 47 with a 9 yr old daughter (she was a miracle baby I wasn't suppose to have kids due to Hodgkins Disease in 96) very Blessed I am. So please hang in there it does get better but it does take time; I know from the prevoius cancer. God Be with You & God Bless. See I don't even think this sounds right! Trish

 

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Trena answered...

About the chemo brain, the fog, the lack of concentration....I understand totally!!! I do think your side effects sound worse than mine; nevertheless, NONE of it is good! Here's what helped me a lot: Get some crossword puzzle or Sudoku puzzle paperbacks, or word games--whatever appeals to you. Start with "easy" and push your brain to do more. I started with Sudoku and, at first I could seldom finish a "Level 3" (out of 5) puzzle. Level 2 was difficult enough. Now I pick up a USA Today newspaper when they run a Level 5, and I can do it and watch TV at the same time. I'm ready to go to the bookstore and find something that says "Really Really Hard". I was diagnosed with breast cancer 3 years ago this month, and just had another follow-up mammogram today. All is good. This improvement took until now to accomplish! I still have neuropathy in my toes, and some difficulty making my fingers work sometimes--all tolerable. But the difficulty with multi-tasking and too many things on my plate at the same time is still somewhat an issue. I don't know if it will ever be normal again. I should add that Femara and Aromasin made me crazy. I had to quit both--was afraid I'd end up in the nut house. Tamoxifen also messes with my brain, but "only" half as bad. I think I can make it with Tamoxifen. Just saying about the drugs since there's probably a connectiion there, also. Since I am now 67, maybe I'll just slide into dementia and I won't have to be bothered worrying about it! ha Stay strong and positive. Keep praying. God is faithful. Hugs to you, and to us all.

 

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dreamkeeper answered...

Hang in there. My cancer was in 2008 also and I STILL have issues with memory and energy. One thing I found that is helping me, as silly as it sounds, is to do something you used to enjoy before you became ill. Remember you are not ill, just having a few long lasting problems. Consider taking Zoloft, I do, and it certainly helps keep things in perspective. Bad doesn't seem so bad and depression does not last as long.

Recently I rode a bicycle (new one but made in the "old" style) and had a ball !! Had to stop many times and rest but so what, my accomplishment over rode any disappointment in not going as fast or as far as I used to. In life, everyone needs things to look forward to, no matter how small. This keeps life worth living and whether it be a hot fudge sunday, soak in the hot tub or even a short bike ride, you will come back with a better feeling. Try not to dwell on the bad days but keep something to look forward to tomorrow.

To put into words that may help, "chemo kills cells and cannot distinguish between brain cells or happy cells or even sad cells" I guess it is up to us SURVIVORS to find our joy our own way.

I AM HAPPY TO BE ALIVE AND PRAY THAT GOD BRINGS HAPPINESS TO ALL SURVIVORS.

 

shelbyzgrammy answered...

Just wanted to say I was re-reading the posts and I think all of us that have participated in this ask and answer page are awesome !! Hope all are doing as well as can be expected under each individual circumstances.
God Bless you all :)

 

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thumper2 answered...

question with a question: I am totally sympathetic to this problem, but no one is addressing how does your family cope with this long term, how do you deal with this without sucking all the energy out of your family, what have you been doing that makes your family,caregiver not be overwhelmed by this

 

jeanniej5tx answered...

For what it's worth....my husband was diagnosed with stage 4 colon cancer in 2008. He underwent radical surgery and intensive chemo every 2 weeks for 3 days at a time. This went on for 7 months. In January 2010, the cancer had returned but it was aggressivly growing in his abdomen this time. They immediately started an aggressive form of chemo again because we had a very hard time finding a surgeon that was willing to even try to remove the tumor. The chemo continued and was modified along the way. He went from the standard thru the worst you can get. This was every 2 weeks, 3 days at a time, from January 2010 thru April 2011. Finally, we were told that they had exhausted all FDA approved treatment and he was referred to Phase 1 clinical trials. The tumor grew during this time. In May 2011, we found our amazing surgeon who we are forever greatful to. After chemo ended, my husband became depressed because of what he discribed as "staying cloudy". We had been thru so much and I was NOT gonna let him give up then! I am ADHD so I am prescribed Adderall 2x per day. (It puts me on an even level and helps me stay focused.) I had been told that a person who is not ADHD would experience a sort of "rush" of energy, making this a highly abused drug of many teenagers. On impulse, I asked him to take one of my Adderall. It had an immediate effect. (within 15 minutes) He took it again the next day, and at his oncology appointment we discussed the affects with his Dr. He was prescribed Adderall daily for cancer fatigue and has come back to life! In addition to the energy, it has also seemed to help with the "chemo fog". He said it made him feel like he was a 16 yr old kid again.(My husband is 49) Maybe this is something that could help someone else? = )

 

bornon420 answered...

to answer thumper2 question about what to do about it, as a 4.5 year "chemo brainer" (and i still suffer from neurological damage to arms and legs from chemo) sadly not much can be done i my view. i would like to take a moment and mention CHEMO PREVENTION. If you take a few minutes to research the human body's ENDOCANNABINOID system, you will see it is in charge of apoptosis (regulated cell death) as well a regulating almost every biological system in the body. Then look into The Rick Simpson story. Thousands of folks have cured their cancers by ingesting very potent cannabis oils. I'm convinced i would have died in the hospital had a friend not introduced me to this little plant smuggled into my hospital bathroom on my 3rd hospitilazation bout (almost 3 weeks of 104+ temperatures, 24-7. temp dropped to 99.8 within 5 minutes, and i wanted to EAT! which i had LONG since written off as a past pleasure) many cancer patients have heard of cannabis for nausea, not near enough realize it is there best shot of ressetting the body apotic system and becoming cancer free WITHOUT CHEMO!) over 70% of those who attempt the oils make it, even though many are stage 4 and sent home by the time they hear of it! PLEASE read the peer review on the subject, many studies have been done (most health related issues not just cancer can be dealt with with these oils, because they all stem from CECD, clinical endocannabinoid defiency syndrome.) ANANDAMIDE=CB1=THC

CANNABIDIAL=CB2=CBD

Our bodies naturally produce cannabis (anandamide) ect. these cannabinoids are THE regulatory mechanism in the body. our bodies utilize essential oils (the ones we don't produce ourselves omega 3, 6 ect) to produce these cannabinoids. the average american is 50-1 fla ratio, we should be 3-1. combine THAT defiency with stress and what we put in and ON our bodies and you have the basic knowledge to beat ANY health issues. Hemp SEED oil available in health food stores is the perfect balance of these oils. to avoid cancers eat a whole food diet, lower your stress levels, and eat LOTS of hemp seed oil, be careful what you put ON you body as well. If you already Have cancer, procure and ingest a minimum of 1 gram of cannabis (hash) oil daily for several months or until you scan clean! and if your REAL keen on believing everything your goverment tells you, look up where they patented the plant for its neuroprotectant and antioxadent properties! weve been lied to folks!

 

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laurinj answered...

I too experience chemo fog or chemo brain and it is the worst and longest lasting side effect for me. I had chemo treatments from 9/2010-2/2011 then radiation until 5/2011 and the fatigue, muscle weakness etc is much more managable than the memory loss and it is now now only frustrating for me, my memory loss caused my son to receive a zero in school and get in trouble for lying when it wasn't his fault! In a nutshell, he had an assignment due in school and it wasn't handed in. His father..my ex...asked him about it and he said he did it with me but when I was asked, I had no recollection at all and we concluded it just wasn't done. He.got a zero, which he can't afford...last night, I asked my son to again tell me about the assignment and it suddenly came back to me that he DID do it with me and after looking for it, I found it! I contacted his teacher, his father and my son and explained what happened and apologized for for forgetting. I'm pretty sure his grade can be reversed but now that my chemo induced memory loss is effecting my children I am disgusted with myself and concerned. I am so glad for everyone who has shared their story but now, my attention is going to need to ne focused on what to do and how to find ways to get better!! Other than medications for depression and ADD, which I've been on for years before cancer, is there anything else that has been effective?? Thank you for listening Lauri

 

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craftjunkiesc answered...

I'm near tears to know that my symptoms & feelings are valid! And to know there's a light at the end of the tunnel to these symptoms. I found a lump in Aug '11; had biopsy in Sept '11; had radical modified mastectomy in Oct '11; had 8 rounds of chemo (AC-T) and 33 rounds of radiation. I'm post treatment now for 1 month. Truth be told, radiation was harder on me than chemo. I continued to work thru my entire treatment, cutting back on weekly hours and length of shifts. I still feel extremely exhausted most days, particularly following a 8-9 hr shift. Can't seem to make my manager understand that just because treatment is over, that doesn't mean I'm cured or recovered. She expects me to go from being on a 2-week medical leave because of radiation blisters to working a 40 hour week. I'm very close to walking away from this job that I love because she "doesn't get it". I know she thinks I'm not being truthful, because she tells me she looked up my "symptoms" and tries to tell me how to get better. Just so glad to have validation that I'm not being a wimp and that this too shall pass. Thanks to all for sharing your experiences.

 

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An anonymous caregiver answered...

I am a young male. I had chemo,radiation,and multiple surgeries 8 years ago for stage iv bladder cancer. I did not experience alot of cognitive impairments initially, but memory and learning new things has worsened dramatically over the last few years, to tbe point now seeking disability. I have had repeated neuropsych tests over the last couple of years which show a subtle decline over time. The strangest thing is that my IQ scores are relatively unchanged 150-160 range. I have asperger's as do both of my sons and is inherited. Docs have told me they are not sure of the reason for the delay in cognitive decline other than the possibility of some compensation from effects of aspergers. The issue of chemobrain really does make one feel as if they are going into uncharted territory....

 

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monab53 answered...

I was diagnosed with Hogkins lymphoma in July 2011 ... in Nov they said I was cancer free.... Chemo and Radiation wore me out ... (the radiation more than the chemo .....I have the same type side effects that are being discussed .... Brain fog ... weakness.... Fatigue ... mood swings ... I taste every preservative in any food that i eat .... concentration is almost impossible ... I feel I have forgotten more than i ever learned .... I pray for all that have commented here ... I feel your stress and frustration ... God is good we are alive ... He shows up when I need him most ......

 

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An anonymous caregiver answered...

OOPS, MARIJUANA MAY PREVENT CANCER (PART I): Federal researchers implanted several types of cancer, including leukemia and lung cancers, in mice, then treated them with cannabinoids (unique, active components found in marijuana). THC and other cannabinoids shrank tumors and increased the mice's lifespans. Munson, AE et al. Antineoplastic Activity of Cannabinoids. Journal of the National Cancer Institute. Sept. 1975. p. 597-602.

OOPS, MARIJUANA MAY PREVENT CANCER, (PART II): In a 1994 study the government tried to suppress, federal researchers gave mice and rats massive doses of THC, looking for cancers or other signs of toxicity. The rodents given THC lived longer and had fewer cancers, "in a dose-dependent manner" (i.e. the more THC they got, the fewer tumors). NTP Technical Report On The Toxicology And Carcinogenesis Studies Of 1-Trans- Delta-9-Tetrahydrocannabinol, CAS No. 1972-08-3, In F344/N Rats And B6C3F Mice, Gavage Studies. See also, "Medical Marijuana: Unpublished Federal Study Found THC-Treated Rats Lived Longer, Had Less Cancer," AIDS Treatment News no. 263, Jan. 17, 1997.

OOPS, MARIJUANA MAY PREVENT CANCER (PART III): Researchers at the Kaiser-Permanente HMO, funded by NIDA, followed 65,000 patients for nearly a decade, comparing cancer rates among non-smokers, tobacco smokers, and marijuana smokers. Tobacco smokers had massively higher rates of lung cancer and other cancers. Marijuana smokers who didn't also use tobacco had no increase in risk of tobacco-related cancers or of cancer risk overall. In fact their rates of lung and most other cancers were slightly lower than non-smokers, though the difference did not reach statistical significance. Sidney, S. et al. Marijuana Use and Cancer Incidence (California, United States). Cancer Causes and Control. Vol. 8. Sept. 1997, p. 722-728.

OOPS, MARIJUANA MAY PREVENT CANCER (PART IV): Donald Tashkin, a UCLA researcher whose work is funded by NIDA, did a case-control study comparing 1,200 patients with lung, head and neck cancers to a matched group with no cancer. Even the heaviest marijuana smokers had no increased risk of cancer, and had somewhat lower cancer risk than non-smokers (tobacco smokers had a 20-fold increased lung cancer risk). Tashkin D. Marijuana Use and Lung Cancer: Results of a Case-Control Study. American Thoracic Society International Conference. May 23, 2006.

 

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ddl answered...

To anonymous caregiver and other posters: I had chemo and radiation in 1999--2000 for recurrent breast cancer (first occurrence 1995). I have been fatigued since those treatments. I've worked full time since then and spend the rest of my time in bed. My husband has been calling me "lazy" all these years, but I knew something was wrong. I thought it was depression and have been seeing a psychiatrist who prescribed some medication that made me feel emotionally better, but I'm still fatigued. I've just had a recurrence, and am in treatment again, and was reading about different treatments when I happened upon this site. Thanks to you all for explaining my life since 1999. I guess I'll just never get better--can you imagine that I've been hoping all these years? Thanks again and bless you all.

 

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ronniejr37 answered...

I was diagnosed with Stage 2A testicular cancer in June of 2011. I had the surgery in July of 2011. Chemo Started in Sept 2011 and was completed Dec 2011. I relocated (Temporarily) back to Southern California for my Chemo and to have my family close and for the support. I got the info on the side effects of each of the 3 Chemo drugs I was on. BEP (Bleomycin, Etoposide, Cisplatin) I experienced most of them from mild to severe during the treatments. I am still, after 1.5 years experiencing some of the physical side effects such as the neuropathy in the hands and feet, ringing in the ears, loss of hearing, skin and nail problems and a few others. Prior to my diagnosis I was in very good health and had no major medical problems. My quality of life and health have taken a major turn for the worse. 1 year after my Chemo, I ended up with a serious case of appendicitis and had my appendix removed. The Doctors could not seem to give me a definitive answer if this was a late side effect of the Chemo. I am dealing with this and most of these side effects are getting worse as time progresses. However, here is the kicker, I am now having problems walking and have moderate to severe pain in my groin, legs and calves. It is becoming very difficult to walk. I am having chest pains, shortness of breath and feels like an elephant is sitting on my chest a lot of the times. I am suffering from moderate to severe headaches 6 to 10 times a month. My Doctor feels there is a slight chance it may be related to the cancer and Chemo. He has tentatively diagnosed me with Peripheral Artery Disease (PAD) and a possible Cardiac problem. I have done some research on-line about late on-set side Effects of Chemo. It appears there is a connection no one ever mentioned to me. I have discovered a connection with Cisplatin and vascular and cardiac problems. However, I cannot seem to find definitive answers to these questions. Another area that was not discussed with me was the long term mood and mental changes also related to Chemo use. Again, I did as much research as I could, and again, there does appear to be a connection with Chemo, especially Cisplatin that can alter cognitive skills and mood years after its use. The anxiety, depression and possible PTSD that some people get after the Chemo and radiation. Well, It looks like I am one of the low percenters that experience this. I returned to work (Executive Management) and within 9 months, I could no longer function due to the physical and mental side effects. I would have these major panic attacks, depression, but I did not recognize the symptoms at that time. I was also extremely fatigued all the time but could not sleep. I had to resign my position because I could not do my job, but I did not or could not understand why. I returned back to Southern California and within a week, I was working in another Executive Management Field. Not knowing what was wrong with me, I tried to work but could not, couldn't focus, I was agitated all the time, could not sit still, I would snap and yell at my employees. My position required the reading of financial reports and technical drawings. I would stare at them and could not figure them out, this was my job. I could no longer manage my people and it went downhill fast. After 6 months I was terminated. I have never been fired from a job before! So this really hurt. I ran in to a friend I had not seen in years, 15 to be exact, turns out she is an oncology nurse in Wisconsin...WOW....We talked for hours. She says I am probably one of the low percenters that are suffering from Post Chemo Generalized Anxiety Disorder, Depression, possibly PTSD and cognitive changes and disorders due to the Chemo treatments as well as the physical late on-set side effects. She suggested I see my Oncologist immediately. She explained to me that all of these things I am feeling physically and mentally have been linked to Chemo treatments and late on-set side effects years after the treatments. According to her, these types of effects are not generally discussed with cancer patients so as not to scare them out of the treatments or panic them while going through the treatments. Not everyone experiences the same side effects or seriousness of the side effects. This sort of makes sense to me as the Chemo did save my life and I would have chosen to have it anyways, but the fact is, I now have to deal with these debilitating problems after the fact..

 

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NancyD2 answered...

Such familiar voices, comforting in a strange way. I am also a breast cancer survivor. 11/06/06 - bilateral mastectomy. Triple-negative CA. Chemo x 6 months weekly. First chemo tx, 1 week later landed in hospital with neutropenia fever... white/red blood cells dropped to extreme dangerous levels. Thrush everywhere in/on my body and losing hair already. Continued with aggressive chemo on a weekly schedule from January-June 07. So many of your stories sound like mine. Six years later, I am improved but still have cognitive/memory/stress difficulties. Husband and family are done with me. They just don't get it. This has been a long, lonely, arduous journey... and it is not over. Some survivors have said it is a 'new' normal. I agree and accept that now. Thank all of you for your candid and validating stories. I do not feel alone anymore. You are so brave. God Bless.

 

 
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