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Patients Against Lymphoma


Support > Patient-to-Patient > Patient Experiences & Guidance

Remission after diagnosis with advanced Lymphoma with bone and bone marrow involvement


Randy's case is somewhat similar to my own. I was diagnosed with follicular NHL in January of 2002 (at the age of 46) with involvement in my bone marrow (positive biopsy), left femur and pelvis (ugly dark spots on the x-rays plus a pathologic fracture of the femur), my lymph nodes (neck, groin, and abdomen), and spleen. Stage IV. Grade 3. My family doctor said "I have some difficult news for you." I thought, thank God, it could have been BAD news! But it's just difficult...

My treatment regimen began with CHOP plus Rituxan. After two sessions of CHOP, we took a break so I could have a titanium rod inserted into my left femur. This was due to the pathologic fracture. Did I say inserted? I think they use a hammer. (That's why they call it a femoral "nail.") After eight sessions of CHOP and six Rituxan, I was clean. No evidence of disease. No black spots on the x-rays of my femur or pelvis. I still can't play the violin, though. 

Next I went into maintenance mode. Zometa once a month (to rebuild bone density and strength) and four rounds of Rituxan every six months. Oh, and I had my stem cells harvested along the way. I like that word - harvested. I always wanted to be a farmer. The stem cells are in a bag with my name on it in the freezer. The hospital's freezer, not mine.

After three years, I'm still in remission, and all my counts are normal. The Rituxan has ended but I'm told the Zometa will go on "indefinitely." My oncologist says I'm a "responder" to Rituxan, so that is what we'll do first if it comes back. (He says "when" it comes back but I say "if." It just sounds better.) My quality of life has been great. I worked through the whole deal, even finishing my MBA while I was on CHOP. At my graduation I was bald. Looked just like all the young kids who shave their heads just for looks. (By the way, when told that my hair would fall out from the CHOP, I replied "You get rid of the NHL and you can keep the hair." But it came back anyway. Still gray.)

The point of all this is to let you know that even though the options may seem complex, today's treatments can do wonders. The advice and experience of the people on this list are fantastic resources. The ability to communicate with people who have been through an almost identical treatment regimen is what I enjoy most about this list and Karl's web site. I'm sure that Randy will do well with whatever treatments you decide on. Good luck and God bless! 

BG, NY (nhl-follic)

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