My Mom has had cns lymphoma for six years it has been a long rollercoaster ride me and my husband ar

Dear Rosemarie:

I can certainly sympathize with your situation and what you and your husband are going through. I recently found out in January of this year that my mom has cns lymphoma. You are right, it has truly been a roller coaster ride for me, my husband, and my siblings. This has been the most challenging situation that I have ever had to go through. I too have felt heart broken, and I am sorry to hear that this is your mom's 5th bout with cancer. It must be so hard for you. Since she was diagnosed, I have been in and out of the hospital with her for chemo treatments, spending day and night with her because I vowed that I would never leave her. I find myself feeling helpless, frustrated, wanting to cry, crying, and wanting to run away from it all because it is all so overwhelming to me. I am married and have no children. My husband has had to spend time away from me and thank God that he is really caring, understanding, and supportive of this whole situation. My mom is 60 years old and is very insistant and demanding. She wants my undivided attention and sometimes I get so frustrated with her. I try to be patient and tell myself, put yourself in her shoes, But it does not change the fact of all the anger, frustration, and helplessness I feel, not to mention the guilt that I feel because I get short with her and impatient with her. I really understand how you feel and also would love to hear how you and others out there are dealing with this type of situation? Can anyone recommend any support groups or books to read? I sure would appreciate anything that would keep me at peace without losing my sanity.

ChildofGod68

Hi  I am so sorry to hear that you to are going through this terrible situation. It truly is a terrible disease, relentless. I so understand you loosing your patience, because I have to. She has been in my home with me for six years through construction and all. She does own a home but that is a bigger problem, Being I have a very difficult brother. So we have gotten no help, just problem after problem, want to sell her home,but he does not want to,well sorry to complain guess I am just tired. I do hope your Mom does well. My mom has had sucess with Methatrexate and Procarbazine or temadore. If you have any questions that I can help with let me know. I dont know where you live, But my Mom is being treated at Sloan Kettering Cancer Center in NYC. We only live about 30 minutes away. Good luck Rosemarie

Hi Rosemarie,

I know that dealing with a loved one who is sick can be so exhausting. I live in Illinois and was wondering if you or anyone else knows of any support groups or books to read about when someone you love has cancer? I know that I also need to take care of myself, and so do you and your husband. My mom is being treated with  Methatrexate, Lukovorum, and steroids. So how do you deal with your situation with your mother? I would love to hear from you again, Take care and may God richly bless you and your family.

ChildofGod68

 My first time to blog, it was helpful to log on and see that others are tired, mentally and physically experiencing some of the anger and then guilt that i know i have felt.  My sister was diagnosed 3 1/2 years ago with stage 4 -- Triple negative and Inflammatory breast cancer.  This has been lonely for us both, my sister is not married and has had very little support from friends and family.  I feel she has a huge load and so do I.  She has been in treatment the entire time, it has now come through the skin in several places and her quality of life has been going down hill for months.  I have read that many people regret spending all of their time and their loved ones in appts and treatments, i really question at this point what if anything good will come of it.  I know at some point i will need to discuss hospice or something with my sister, but the communication is not really that good for that she is trying hard to control everything, but everything is getting more out of our control.  Anyway, nice to vent with other that have some understanding, truly if you haven't walked

this you have no idea.

Wishing all of us the objectivity we need.

Hello to all of you, I am joining you on the emotional rollercoaster. I have taken in my mom who has cancer and I have spent many months crying and not really wanting to ask why us? I have a wonderful understanding husband and 3 kids. It has been a real challenge for us since I have 2 older siblings that refuse to help with anything associated with mom. Everyday is a different challenge and sometimes aggravating discussions. Mom just started chemo last week and she hasn't really had any major side effects yet, some days are better than others. Right now I'm laid off work and we're trying to make ends meet so that makes it a little harder to deal with things. The only thing that keeps me going is knowing that if I were in her shoes she would do the same for me.

This is my first post.  My mother has had CNS lymphoma for almost two years.  We did the chemo and thought we got the tumor that was in her brain.  Now she is having symptoms of it returning in her nerves in the spine.  She has little use of her left leg and she has severve pain.  It has been a long roller coaster with little answers on what is going on.  I wondering what others have experienced with CNS lymphoma and it reoccuring?  Also are there any specialist in CNS lymphoma in the country?  This has rocked our family and the amount of care and emotional toll it is taking on her and all of us is almost unbareable.  Any insight or advice is greatly appreciated. 

Stacy in Michigan

I totally sympathize with you. My Mom is just getting through her 5th bout of cns lymphoma. It has been 6 years of total hell . It is only me, I do have a brother but that is another issue, he is not in the picture at all. My husband and children have sacrificed alot. My mom lives with us so we are her caregivers. I will tell you the Doctors we use are the Doctors that wrote the book on CNS. They are in Sloan Kettering in NYCity. I beleive she would not be here if they did not treat her. Dr. DeAngelis Is top in this field, She specializes in CNS Lymphoma, She is world Renoun. I will pray for you it truly is a hard disease to live with For both the patient and the caregivers. Best of luck to you. If you need any info you can contact me.

Thanks for the reply. It has been so hard and the hardest part is not knowing what is going on. Has your mother had any mobility issues due to the CNS? My Mom has extreme weakness (she cannot hardly walk now) in her left leg and almost uncontrollable pain in her lower spine. She is getting her treatment at Univ of Michigan and so far they have been great but they are not able to locate the CNS this time. They believe with her symptoms it has returned but they cannot locate it. This is so frustrating because since they cannot locate it there is no plan for treatment. And at this time they are just working on controlling the pain. I am just worried and want to make sure we are not missing something.

To all concerned, I suggest you read mans search for meaning (http://www.amazon.co.uk/Mans-Search-Meaning-Viktor-Frankl/dp/0671023373 [co.uk]).  It is only a short book (200 pages), but is truly life changing and gives meaning to your suffering.  I would really recommend it!

Can I please ask, the people whos family members are suffering from CNS, what prompted the need to get diagnosed, as in what were the symptoms?  I hope you dont mindme asking...

Kindest Regards,

Decaf

Hi Stacy,

I am sorry to hear of your mother's illness! I'm glad you found us for support. Do let us know how things progress, and we're thinking of you. :)

My daughter got cns lymphoma (Large B cell Non-Hodgkin lymphoma) last August 2008 and put on methatexate and R chop chemo by Dec 08 went into remission, but only 2 weeks ago the lymphoma is back in her cns and bone marrow. This kind of cancer is usually only in the very young or older people my daughter only turned 26 beginning of August I am so totally in shock, after visiting our doctor on Friday he said that it is so rare to get lymphoma in cns that only maybe 1percent will survive here in New Zealand. To me my daughters life is only starting and it's so unfair she is such a wonderful and caring person. The stress this put's onto families, I would just like to know is there any advice you could give for any other treatments that could possibly help. I only lost my father 3 years ago to portal vein cancer and to see this man suffer just broke our hearts I can not even begin to imagine the pain of losing my daughter, in normal life I'm the one that should go first.

please the best thing is pray and let GOD guide you hold on to her hand spend as much time and do good things together for good memories i lost my dad to cancer and he ask me to hold his hand and pray for him or with him and i was with him when he had his last heart attack i dont remember much about his funeral even though i was the one who had to plan it believe this 3 days before he died he had me go pick out everything and i took copys of the pictures of the casket so he had a lot in helping me cause he knew it was gonna be hard so we helped each other it may not sound to encouraging to you but to me and him it made a lot of things easier for the both of us and helped us except the outcome its been almost 2 years now and i remember all the good things we laughed about and talked about that no one else got to share in so we had a bond closer because he had accepted what was to be and he helped me accept it also so mainly all i can say ill keep her in my prayers and just do as much as you can with her dont bring up her cancer because when she needs to talk she will come to you for her comfort and you can be there for her but just remember God never promised us a tomorrow so live to the day and enjoy it like its the last day you will ever have GOD BLESS you and her just be there and be her strength

hey just be there but also take time for yourself ive been through the same thing with my lad you dont want to leave her for fear of her passing while your gone but believe me have a big family night and believe me it will reduce the stress so much i didnt have anyone to help me but i beged my brother to just help so i could go out to eat and go home for a couple days and im thankful for that just remember this talk about all the good things in life the happy stuff let her know you are there and shes not alone and God is right there with her pray for her with her and read the bible to her it will mean so much to her even on your and her most darkest days .do what you feel she would do for you and youll be much more at ease. GOD BLESS.

Blenkie,

I am so sorry and I wish I had the right words to help make it better for you. My own mom has pancreatic cancer. She was just diagnosed three months ago and it has been an awful awful time. I always feel so scared and angry and sad! I will pray for your daughter and remember her in my thoughts. Will you do the same for my mom?

Anonymous,

Thank you so much for sharing your story with this group (me) about you and your dad. My mom is suffering from pancreatic cancer, and many days I feel so scared. Your story gave me hope for the future. I hope I am able to be a rock for my Mom like you were my dad. Will you please remember my mom and dad in your prayers?

Hello Everyone, My mother had CNS lymphoma. She had no symptoms until her face started going numb and she started forgetting things and didn't know what year it was or who people were. It was so heartbreaking. We took her to the emergency room and they took a ct scan of her brain and it showed three lesions in her brain. They did a biopsy and discoverd end stage CNS lymphoma. She was diagnosed the last week of april and she passed away on june 13. The chemo they gave her did not help shrink the lesions. She went into a comatose state and would not respond to anyone. The cancer was killing her. She was coherent on mother's day and we all got to talk to her one last time. I think she was saying goodbye to all of us. She is in heaven now and I miss her everyday. I cry everyday because she is gone and it is hard to comprehend how quickly she was taken from us, but she is in a better place now and she is an angel watch over us. My thoughts and prayers are with all of you in this difficult time.

My wife and I are both cancer survivors. She had a kidney removed about 25 years ago and I had bladder cancer diagnosed a little over two years ago. We were both lucky in that surgery was able to remove the tumors and no additional treatment was required after the surgery. However, in both cases it was a rather traumatic experience. We received a lot of help from the American Cancer Society's support line at 1-800-227-2345. They were able to connect us with some local support groups and individuals where we could get the help we needed to get through our situation. Another source of help is the web site of the American Cancer Society, www.cancer.org

im sorry

Hi Stacy,

Read your post about your Mom. How is she doing? My Mom was diagnosed 4 months ago with CNS Lymphoma. The effects have been devastating. Did your doctor ever tell you what had caused your Mom's illness? We struggle with what caused my mom's illness.She had no primary site and no known risk factors. Hoping your Mom is at peace and your family is coping ok.

I am so sorry to hear about your Mom. I am sad to report that my Mom lost her life on September 23rd of this year. It does not even seem real. I miss her every single day. Her battle was just about two years to the date. This is a very unpredictable disease. The initial cause is not really known I know that my Mom did have Rheumatoid arthritis and that is an auto immune disorder and because this disease is common in people with auto immune disorders I think that may have been a cause. But I think it is really unknown. I am so grateful that I had my Mom for two years. I wish she was still with me, but I know that they have made great strides in CNS lymphoma and everyday they learn more about it and how to treat it. So be hopeful I know my Mom had a great oncologist at U of Michigan and he had patients that lived for many years in remission. I was hoping she would be a lucky one but the cards did not play out that way. I know she is not in pain any more and that is comfort to me and my family. My thoughts are with you and your family. Cherish every moment.

Thanks for your reply.My Mom is so sick that I think it is just a period of time....I just pray that she not linger like this a long time.You are right when you say it is an unpredictable disease.Everyday is different.I do really value this time to help her and glad she is home surrounde by loved ones.

prayers for you and your family. Treasure each day May God Bless

I have been a caregiver to my Mom for 9 years. We moved into my childhood home 9 years ago. We gav up our dreams, our thoughts about moving to Vermont, pretty much all our dreams. From the begining, Mom was in control.She did not want any of our furniture in the house. We couldn't even raise our voices when we argue and forget about sex! so my marriage started to go downhill. I told my husband I had promised my Mom I would care for her in her later years. so he compromised. Mom had to be in control. she did her own checks, read her bills and mail. The problem it was killing me literally. I had 3 heart attacks, open heart surgery and I began to fall-one extremely bad fall in the bathroom that put me in ICU for several days. Mom was eventually finding it harder to breathe. She was in so much pain. On morning I sat in her diningroom/bedroom asked if she was ready for hospice.She said yes,Icalled Hospice.They came out to evaluate her and the doctor said yes. She died a week and a half later. Hospice is the answer to an unbearable situation. You do not need to be six months or more for help. You can go in and out of it. That was my experience it. But Hospice is so welcoming and loving. I don't know if it will work. May God Bless you and grant you and your loved ones peace.

Rosemarie,

I can only say to you through my own experience taking care of my mother for 7 yrs was a complete and total feeling of helpless. Just being there for her was the best I could have done. I had to put my feelings to the side and feed her positive energy; as long as she was able to understand and comprehend what was happening to her, the pain, discomfort, suffering the harder it was. Hospice was able to help quite a bit, my hat off to them! Then as years passed & condition becoming worse, Alzheimers crept in. And my feeling was relief for her, it hit fast and hard, she knew nothing for awhile which by all means was easier for her. Until one day, I just knew and she said goodbye; in my arms she held tight we kissed and said to her the good Lord is here to take you home, she smiled, we curled up in her bed(at home)holding her tightly, loving her, was the most precious feeling and closeness to our Lord we've ever felt. Yes, throughout it all was so tiring, draining emotionally. But my thoughts stayed within her, she was loved all the way to the new beginning. That was my sharing experience. I do still miss her after just 2 years in March 2010. But my being with her at the end had to have been most warming. Sincerely