Follicular lymphoma transforming to diffuse large B cell lym

steve04 · New User Joined: 04 Sep 2008 Posts: 1 Location: CYPRUS

I was disgnosd with Follicular lymphoma in June 1998. Treatment with Chlorambucil followed and after a while a series of CHOP chemo. Following a lengthy remission the inevitable relapse came along and I was included in a clinical trial sing Ritixumab with CHOP. This was very successful and gave me four years of remission. Just as I was thinking the remission was too good to last I discovered a very sore area in my right upper chest which after being CAT Scanned showed a 'mass'. Back to my haemotologist who diagnosed (after various tests and biopsy) the dissuse large B cell lymphoma. This transformation from Follicular is by no means rare but tends to signal the beginning of a very different ball game. I was offered a Stem Cell Transplant and took it. The conditioning for the transplant was a nightmare. The first of two weeks of R-IVE (24 hours a day of chemo for six days) was very hard. I needed a few weeks break before the second week which was a little easier. Clearly I don't tolerate that particular chemo very well. By this time I felt extremely unwell and had lost more than 20 lbs and become virtually anorexic. Then followed a month of radiotherapy which was relatively easy. By now I really didn't feel I could cope with the hi-dose chemo (which my consultant assured me would be rather worse than the R-IVE!). After the monthof radiotherapy I felt better than I had for many months and declined further treatment at that time. I had a PET Scan which showed only a very little ambigious activity so a further scan was done a few months later which showed no activity at all. Buoyed by this I returned to my holiday home in Cyprus hoping for at least twelve months remission. That period is now about up and I continue to be well but fairly reasonably worrying about when the next relapse will come and its nature. i.e follicular or more of the same large B celldiffuse.

Essentially what I would like to know is other patients experience of the transformation from low grade to very aggressive NHL; their treatment and their understanding of their life expectancy.

I am now 62 years old and having had NHL for ten years (mostly good) do not really expect too much more of the good stuff, but we'll see.

Best wishes to everyone out there and I hope the best possible for you.

brainman

steve04 I am so sorry about your lymphoma. I do not know much about NHLs but just wanted to let you know that you are in my thoughts and prayers. I know others with more information will reply.
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Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

ChemoMan

Hi Steve
First off you congrats on surviving that chemo regime ! that was pretty heavy going
Steve you have DLBCL lymphoma now. Relapses are not inevitable and cures are common. If it comes back it will be in all the places it was before, but you need to realize that it is not inevitable that you will relapse as it was when you had follicular lymphoma. DLBCL can and does get cured.
Be proactive and get a PET/CT scan, no harm in knowing where you stand. If it's clear I think you can relax and enjoy your life Smile

Good luck and don't panic
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
http://cancerforums.net/viewtopic.php?t=9620

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