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Rich's Story - Surviving transformation

Out from lurking. I'm still in remission nearing ten months from my last cycle of CHOP-R. Been reluctant to post as after chasing vaccine to several dead ends, two failed biopsies for vaccine manufacture - I transformed before getting vaccine treatment. My wife Becky and I will be in DC next weekend for the conference so an update is in order. 

Things I have learned in the process:

W&W is not without risk:

My "remarkable" spontaneous remission meant I could never get into a vaccine trial as except upon initial diagnosis, I never had harvestable nodes. When they did pop a bit then there were no appropriate (e.g. nonrandomized) trials open. Meanwhile as I continued to look and go into complete spontaneous remission I got hit with transformed diffuse large cell
lymphoma. 

Transformation treatment of choice for DLCL (Diffuse Large Cell Lymphoma):

Clearly CHOP-Rituxin is now the treatment of choice. No fooling around with aggressive DLCL. The debate was on 6 or 8 cycles. Conventional US wisdom has been 6 cycles. The definitive French study used 8. So since a study has never been done comparing the benefit of 6 to 8 we eventual went with 8. Even Dr. Levy did not have a convincing reason to go with 8 except the French study was done with 8. FYI - that was the study that showed the increased success if treating "de novo" DLCL with CHOP plus Rituxin (moving the cure rate from 40% to 60%). Since at 6 cycles one has had their one shot at the toxic adriamycin (the red death) - the fourth drug which differentiates CVP from CHOP - I decided more in this case might be best. The group concurred - thanks. I did do a "muga scan" (measures heart performance/damage) after 6 cycles before proceeding to 8. For those who have gone through 8 cycles of CHOP it took some courage to continue to the last two cycles.

CHOP-R Success Rate:

If one has de-novo (initially presents with) DLCL then the stats on on your side. Looks like a 60% "cure" rate now with CHOP-R. But if one has DLCL from transformation from indolent NHL then the "cure" rate is only 20%. That makes for a challenge. I emotionally started with the first statistic and later learned of the greater challenge after a few weeks. Good news is that a select sub group (the 20%) treated with CHOP-R seems to be either cured or gained sustained remission (this group has now been followed for 6-7 years so far since CHOP-R started being used) - from both the DLCL and the indolent form of NHL. Meanwhile the 80% risk of relapse is strongest in the first two years. Initially I was told the indolent NHL would definitely come back. That was disappointing but the DLCL can kill in 12-24 months or faster so no choice on the CHOP-R. Then Dr. Levy, Dr. Press and my local oncologist a bit reluctantly agreed that the CHOP-R can put both forms into perhaps permanent remission. They never like to say cure because of the long natural history of indolent NHL. In fact consensus is of the 80% that relapse from the CHOP-R, 80% of those relapse in the first year. Some of course never get an initial compete response. I had almost a complete response upon reviewing CT's after my second cycle which also seems to be a positive indicator. So I am looking forward to hopefully clear scheduled CT's in late December - my one year anniversary. 

Consolidation Therapy:

Now here was the single hardest part of my decision making. I got a complete response from CHOP-R. So I went out to the Hutch in Seattle for complete re-staging and to collect and store stem cells. My "team" agreed storage while apparently "clean" was a good idea. Autologous transplant is the fall back for transformed DLCL if it relapses. There is really no other current therapy choice. 5 years disease free survival (DFS) for these folks after transplant is commonly pegged at 50%. Dr. Press and others though are moving that number to 60-70% 5-year DFS by using a conditioning regime using radioactive CD-20 monoclonal antibodies. I screened for that phase II/III  study Dr. Press was conducting but my radiation therapy for the focused DLCL in my back kept me out of consideration. Another door shut. So I went through restaging and stem cell collection. I got caught then between my primary oncologist Dr. Ron Levy at Stanford and Dr. Oliver Press at the Hutch. Couldn't ask for two better NHL docs. Dr. Press strongly preferred, even though I was negative for lymphoma, to go straight to transplant. That was his recommendation. Worry about if I waited, then the relapsed DLCL could become chemo resistant. The jury is far from decided on that. The opposing idea is that those that relapse and are chemo resistant just means
a few pesky cells survived in small numbers the first time around. That mutation over time may not occur. In the end Dr. Levy and I agreed that the risk of waiting for relapse versus risk of transplant (autos have a relatively low risk - about 5% die from the procedure) was a wash. So I decided to try for the 20% cure group and have some quality of life in the interim. Lesson learned - get opposing points of views from qualified specialist then make a personal decision within your comfort level. Time will only tell if I made the "right" decision. 

Restaging is not perfect:

At the Hutch I did just about every restaging test known to man. We all know of CT, PET, MRI, X-ray, bone marrow biopsy - did them - but we went on on MRI of the bone marrow blood supply, flow cytometry, PCR analysis, FISH analysis, needle biopsy. Anyway they couldn't find anything but my PET scan showed an equivalent reading on my left iliac wing. The was an area that was invaded by the DLCL and also we harvested both a biopsy and also a 2cm by 2cm mass for failed entry to vaccine trial (unfortunately I had transformed). So the Hutch said the DLCL was still there, Stanford said it could be other things like mending from the previous damage and surgery. My local radiologist and local oncologist simply said even with a "screaming positive" (mime was borderline) there is a 10% chance of PET scans giving false readings. After a lot of calls, emails and discussions I started to truly understand oncologist bias, leanings and previous experience subconsciously pointing them to one favored treatment. We went beyond to a CT guided needle biopsy of the suspected area on my  insistence (then a FISH analysis etc). All was negative but still not definitive - did we miss the "active" cells? So time will tell whether deferring consolidation treatment (auto transplant) was the right decision. I stored my successfully harvested stem cells and headed back home to Wyoming. A trying three plus weeks in all. Completely clear CT's since show that I was in complete remission after all though.

Life goes on:

Meanwhile I continued to work full time through all of this except when I would land in the hospital. My strength has nearly returned and ongoing doses of B-6 and B-12 seem to be helping in bringing back the sensation that Vincristine killed in my feet. I have my hair back. Still trying to get a consistent positive attitude back though.

So... I hope vaccine becomes truly available and we can avoid this dangerous game of W&W (watch and wait). Something better is already there then waiting most of us believe. About time to make the option available and lets us take the "risk" of vaccine. The risk of transformation is real, I know that. See some of you in DC.

~ Rich 

Rich Bloom, 51 old male, dx 7/00 = nhl-low-grade follicular mixed, initially staged IIIAS, (massive slenomegaly & scattered lymphadenopathy), W&W, progressive spontaneous remission w/o treatment to complete resolution of spleen (85% reduction in volume and no lesions) and no lymphadenopathy neck to pelvis, 5/02 - L4 spinal involvement discovered, 6/02 - L4 area - external beam radiation therapy, restaging 7/19/02 found invasion to left iliac crest and left upper rib areas, biopsy 7/24/02 found transformation to diffuse large B-cell lymphoma, completed CHOP-R - 8 cycles 12/02, restaging shows current CR at the molecular level. 2/03 went through stem cell collection and cyro--preservation in case the DLCL returns and autologous transplant is needed. Remain in complete remission currently.

The opinion above is expressed by a lay individual for information purposes only and is not to be used to diagnose or treat any disease. Any and all treatment decisions should be made with the full cooperation of a qualified physician. 

 
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