Have been reading lots of posts since my diagnosis of CLL 9 months ago - what a great community, which I have found really helpful.
I was diagnosed with Non-Hodgkins DLBCL which is a Richter's transformation from previously undiagnosed CLL. I am a healthy 50 year old female, with no symptoms other than the lump, is was surprised to say the least. And as many of you know, the prognosis for Richter's is 'unfavourable'.
I've had R-CHOP, 6 cycles, which was very successful. The lymphoma is completely gone and I am complete remission for now. My consultant is now suggesting an allogeneic stem cell transplant.
Does anyone here have direct experience of this type of transplant? I read conflicting advice. I am worried about the impact of a transplant on the body longterm, and the risk of secondary cancers. I've also learnt that sometimes people need more than one transplant and need a second further down the line, with further negative impact on the body. On the other hand, people tell me the transplant can 'cure' CLL and with it the Richter's if the new immune system is successfully introduced.
Can anyone point me to good research on the effectiveness or otherwise. Do we have decent stats on the efficacy of SCTs for longterm remission? Or, is there anyone here who has gone through it, successfully or otherwise? I would love to know of people's experiences if possible.
I need to decide in the next month or two whether to have the transplant. In the meantime, I feel pretty well, thankfully. What should I do?!
Thanks,
Jess
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I'm a former Richter's patient and communicate with some others. I was briefly considered for an allo transplant, but due to my age (65) and comorbidities it was felt the risk was too great. There are few RT patients here who have had transplants, hopefully they will see this post.
A transplant does carry a mortality risk, and GVHD graft versus host diseases can be problematic, but new drugs like Imbruvica (ibrutinib) are now being used to control it.
There is no recent data on transplant in Richter's, but let me go through the most recent papers and see what they say, in this regard.
I highly recommend seeing one of the top doctors in your country, who specialises in RT.
A recent paper (2018) by Davide Rossi...states the following...
Stem cell transplantation.
Since the response duration with chemotherapy alone is short, both autologous and allogeneic stem cell transplantation (SCT) have been proposed as post-remission therapies in DLBCL-type RS. Nevertheless, most patients (85-90%) with DLBCL-type RS are unfit or do not achieve adequate response to proceed to transplant.
The European Group for Blood and Marrow Transplantation (EBMT) has retrospectively investigated the role of both autologous and allogeneic SCT as post-remission therapy in DLBCLtype RS (Table 3). 60 By this analysis, allogeneic or autologous SCT may benefit a subset of patients. At 3 years, relapse free survival is 27% after allogeneic SCT and 45% after autologous SCT. The non-relapse mortality at 3 years is 26% after allogeneic SCT and 12% after autologous SCT. Survival at 3 years is 36% after allogeneic SCT and 59% after autologous SCT. 60
SCT could be effective in DLBCL-type RS by two different therapeutic mechanisms: dose intensity delivered by high-dose cytotoxic therapy and, in the case of allogeneic SCT, graft-versus-tumor activity. An argument in favor of the high-dose principle in DLBCL-type RS is the efficacy of autologous SCT. Although there is no clear plateau in relapse-free survival among patients who undergo autologous SCT, only a subset of relapses is related to RS, while the remaining progressions are due to CLL, suggesting that autologous SCT may eradicate the RS component in many patients even though the underlying CLL may persist. The existence of a graft-versus-leukemia effect in RS might be suggested by the plateaus of the relapse free survival among RS patients treated with reduced intensity conditioning allogeneic SCT. 60
Disease activity at SCT is the main factor influencing the post-transplant outcome. Indeed, patients who undergo SCT with a chemotherapy-sensitive disease have a superior survival compared to those who undergo transplantation with active and progressive disease. The major benefit of SCT is obtained in young (<60 years) patients. Among patients receiving allogeneic SCT, those conditioned with a reduced intensity regimen have the longest survival. 60 Overall, these data suggest that both autologous SCT and reduced intensity conditioning allogeneic SCT can be effective in young patients with transformed CLL as long as they enter transplant with chemosensitive disease.
Thank-you so much for all this information. It's really useful, and much better than my doctors have actually given me so far. I've read the paper and am going to share that with them. And I'm going to work my way through the videos - thanks again for those.
The way I see it it's a balance of risk exercise. And so far I haven't spoken with anyone expert in RS here in the UK - although my consultants are great.
I'm hoping my consultant will speak with someone at MD Anderson, we're trying to make that happen. I know they have a big RS department there under Michael Keating. Is anyone here being treated there, or indeed by him?
Thank-you all so much for your responses and information. Really, really helpful and I am super grateful for all advice and information. Keep it coming if you've got anymore!
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