CSN Login
Members Online: 14

Relapse in brain, anybody have similar situation?

Barrett63's picture
Barrett63
Posts: 6
Joined: Nov 2005

After responding extremely well to chemo for a large mass in my abdomen last winter, my B-cell non hodgkins lymphoma has reappeared in my brain. I have been receiving methotrexate treatments all summer. The tumor has shrunk but is not gone and I'm told will always come back in several years anyhow. I will start stem cell transplant in Sept. I can find extremely little information on secondary CNS lymphoma online or anywhere else. My situation is quite rare apparently. The Doctors are evasive about my prognosis which I can't imagine is a good thing. Is anyone out there going through the same thing (I don't mean stem cell, I mean secondary lymphoma in brain)? I would love to talk. I am not doing great emotionally with this unpleasant experience as you can imagine. Thanks

tac52
Posts: 3
Joined: Oct 2005

I had t-cell lymp in the brain and lung. after chemo and stem cell transplant they tell me im in remission but i still feel like i did before the tx.

Barrett63's picture
Barrett63
Posts: 6
Joined: Nov 2005

Did it start in lung first? Were you treated with Methotrexate? I'm in the hospital for treatment now and just learned the tumor is now resistant to the methotrexate and is growing! Not good.
They are going to stem cell trabsplants right away and after that probably full brain radiation which scares the hell out of mel What were the symtoms you still have? sorry for all the questions. best -b

tac52
Posts: 3
Joined: Oct 2005

Mine was found in the lung and brain at the same time. The brain had several small lesions which went away.I had Ara-C injected into my spinal fliud and a high dose Methotrexate along with CHOP before my stem cell transplant.I have talked to several people who have the brain radiation and they all said it was very easy. Im from Kentucky but I went to MD Anderson in texas. We lived there for 8 months last year with an eight year old son. Being away from home was probably the worst part.

Barrett63's picture
Barrett63
Posts: 6
Joined: Nov 2005

Mine originated in my abdomen. I got R-CHOP all winter and everyone thought it was gone, then it reappeared in my brain. I have been receiving methotrexate all summer, but after the fourth treatment the tumor started to become resistant to it and began to grow again. They will need to apply radiation to the tumor prior to the stem cell transplant I believe. I am very stressed about my prognosis (which I know nothing about)

vylets
Posts: 3
Joined: Aug 2013

My husband was diagnosed with secondary lymphoma several months ago.  He was diagnosed with lymphoma eight years ago, went in remission for five, the disease was stable for over a year.  He went through a clinical study drug in June...The disease got worse and aggressive.  He lost so much weight and within these two months he has become skin and bones, in a walker or wheel chair.  He sleeps most of the time.  He started R-Chop five weeks ago.  They couldn't do the second cycle as heended up in the hospital for three weeks witha bloodline infection( from his pic line ).  My husband is 65 and still maintains the spirit that we will beat this horrible disease, once again.  He is absolutely no pain and his appetite is good again.  I love him dearly and also keep the faith.  I too, know very little about secondary lymphoma and would welcome any possitive outcomes and advice to get through this upcomming battle.  It has been an extremely stressful Summer and Fall...I have a feeling the worst is yet to come because he is so frail and weak.  God has been our strength and Ihope he will guide you through your journey as well.  God Bless.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1139
Joined: May 2012

Barrett,

Sorry about your scary situation.  Lymphoma is an odd beast.  Most strains (there are well over 30 routine strains of lymphoma) do not wander off into other organs very readily or very soon in the spreading process.  It does happen, but it is not the norm, or really very common.  The most routine non-lymphatic organs for lymphoma to move into are (1) bone, and (2) the lungs.    I do not recall right off a lymphoma-in-the-brain discussion here, but I do not read every post, of course.  We have had brain tumor discussion recently, but I don't think they were presented as lymphatic.  Oddly enough, testicular cancer often jumps to the brain; this happened to the cycling champion Lance Armstrong. That is of little relevance to you as a female I know, except that you may want to look at what chemotherapy drugs he used against the brain tumor.

Obviously, I would be asking my caregivers about consulting with a subspecialist.  There are undoubtedly oncologists who are expert in lymphatic brain tumors.  A friend's daughter was diagnosed with a brain tumor (not lymphoma-related) a few months ago. The local oncology group was going to ship her off to Duke, until they realized they had a specialist in  her type of cancer at another practice here in town !  So, these specialists do exist.   It is just a matter of finding them. 

Calls to the big-named standards, MD Anderson, Sloan, Johns Hopkins, Duke, are  places to start.  Hopefully, a reader here can help you out with this.  As you yourself stated above, itis apparantly quite rare.

max

Mary N.
Posts: 88
Joined: Jun 2013

Hi,   I was reading MFH's reply above and would call or contact those hospitals he mentioned.  I have primary non-hidgkins lynphoma in my brain.  Some doc's say that it had to have travelled from somewhere else ,some think it can start in the brain.  I was diagnosed in 2010 and have only been treated with HDMXt and Rutixan.  Mine have been stable.  I don't know exactly how to direct you because mine is obvioulsy different than you husbands.  I have tried finding infor about the primary tumors and finding people who are surviving is difficult and I have been told also that it will be back but can tell you that aside from being a bit fatiqued I am doing more and more each year and feeling better with more strength each year.  I was diagnosed when I was 70 and am considered too old for the cell transplant.  I understand that it is really helpful with survival rates so your doc is probably on the right track.

I wish you both the very best and will put you in my prayers.  The NHL in our brains if a tough and apparently rare thing but I've been here with it for almost 4 years.   Oh incidentally, I had great difficulty with the first HDMTX and my doc changed the protocal and he doesn't even start the infusion until my ph is up above 8.  He tries to have it at 8.5 and they keep it there the whole time I am in the hospital and on the leucovoran which I continue orally once I go home for about a week. It made a great deal of difference in how my body can tolerate the MTX.

Feel free to PM mee if you would like.  I haven't figured everything out about this foreum but think I can answer.

Mary

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network