Non-Hodgkin's Lymphoma

[livingwith]

I am a 47 year old white male who is currently in complete remission from non hodgkins lymphoma, stage 3B. I was orginally diagnosed on Oct.13 2006, the same day that my first grandson was born (Jacob Keith). I had previously been a chronic pain sufferer with over 10 years of constant severe low back pain with related pain down my left leg. It seemed unfair but the question to ask yourself is not “why me ?” but rather “why not me?” I originally noticed a large (about hal...Read the full article

[1erm2005]

Keith,

Congrats on your 1 year anniversary. I am now entering my 9th year with NHL with several rounds of chemo, radioimmunetherapy and 1 trial program. My post CHOP treatments (6 cycles) began Dec 2000 and ended in April 2001. I was in "remission" for 26 months and then a relapse. Since 2003 I have had several brief 12-19 month post treatment "remissions". I hope you know that NHL is NOT yet curable as its sister disease Hodgkins is. NHL is a very tricky disease. Today, I spoke to a fellow NHL'er from Minnesota (MN) now 6 years in remission after 1 round of CHOP and doing just fine. However, he too had SEVERE leg and lower extremity pain and was paralyzed for 6 months. He was diagnosed by a neurologist at the Mayo Clinic, Rochester, MN after high powered MRI with a rare disease ONLY 33 known cases in US or the World??- Neurolymphomatosis. This pain eminated from an enlarged (MRI) sciatic nerve. His treatment was a stem cell transplant with his own cells. Don't know if this is what you have, but it took the folks at the Mayo Clinic 6 months to figure this one out. It was that rare. The patient was contacted by a South Dakota farmer recently with the same symptoms, a man in his 60's and he had the same disease and saved 6 months of mystery. You might want to check with your Oncologist to see if this might be your problem. I hope that you are being treated at a teaching facility hospital and NOT by a local Oncologist who may be limited to as required peripheral services. Keith, you may email me at [moderator note: e-mail address has been removed] should you want to correspond. I live outside NYC. BTW, the MN patient is willing to talk to you. Very open and we shared much NHL info. Best wishes for a health 2009.

Ed