Hi everyone, I am 41 and was diagnosed with CLL 4 years ago. I am now on the third line of treatment and my hematologist is recommending a stemcell transplantation.
I am scared, I am confused and I don’t know how I will take the decision to have a transplant (with all the risks and life complications involved and potentially get cured) or continue with treatments (although I don’t have many left).
Have any of you done a stemcell transplant? Or did you refuse to do it? I’d love to hear about your experience.
If you had to make such decision - how would you go about it?
Many thanks for your answers. May you be safe and well.
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Chpot
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We have had several recent discussion here, some refer to them as HSCT or just SCT, the older term is Bone Marrow Transplant, but in reality they are very similar.
Hi Chpot,I can relate with how scary it is to consider a stem cell transplant, esp. given your age...
I had my transplant 2 years back, in my mid 50s, and fortunately I don't have any issues post transplant. But the story could easily have been different.
The stats are quite grim, as you must have learnt by now, and there always seems to be a newer treatment coming on line that might help you get to remission without a transplant.
Your younger age is a big plus for transplant, and the more lines of treatments you have, the lesser the success with the transplant.
It is not a risk free or an easy decision either way, and your decision is unique to your specific circumstances.
If you have any specific questions or need any clarification, do message me and I can share my experience so far.
Thank your for your kind response BoomrangSuj . Taking the transplant feels like playing Russian roulette, from what I have read and been told. I am generally risk adverse and I am scared to enter a lengthy treatment phase. It might sound silly but I don’t feel sick. I have responded well to all treatments I had (with short remission time), I had no/little side effect and have been mostly able to carry on with my life as normal.I am not in remission at the moment so will continue having treatment (venetoclax + gazyvaro) for another 3 months. Then décision time will come.
Thank you for your kind offer. I will surely reach out to you during this period.
Hi Chpot, I am 47 and i was also diagnosed with CLL 4 years ago (high risk CLL: 11q deletion Zap-70 positive) i started with the Venetoclax-Rituximab line of treatment 13 months ago, my CT scans and lab results shows no signs of disease so far "complete remission".I received my first line of treatment (FCR) in late 2017 but my remission only lasted 2 years, hence the short remission period my hematologist was also considering a stem cell transplantation, and we even tested my brothers for a possible donor match.
i am also very reluctant about the SCT treatment, i had a friend who had 2 SCT treatments and he didn't survive the second one (age 38)
i know the statistics indicates that a lot of Leukemia patients survive, and have few complications after SCT, this is probably true for juvenile leukemia patients i'm not so sure this applies to the middle-aged or elderly.
At my last check up, the hematologist a i discussed my options if my current treatment fails, there is a lot of new possibilities and he is not considering a transplant anymore, he stated that the Mayo Clinic stopped using SCT for CLL 10 years ago.
If i had enough money i had gladly paid for a CAR-T treatment myself before trying FCR, when i suggested this treatment years ago, the doctors brushed me of and told me that it wasn't an option for CLL.
but now it is a option, considering my age and fitness level i'm apparently a worth the treatment?
i don't know wichs treatments you have tried yet, but i would definitely postpone the SCT treatment for as long as possible myself.
Hi Lars, thank you for sharing your experience. It’s interesting to hear that your doctor changed opinion over SCT in such a short time. My hematologist recommends a SCT as she only sees 2 possible treatments if the current one fails to have long lasting effects. And she believes it is the current one has the highest chance of enabling remission (as the requirement for a SCT). The amount of uncertainties and ‘guess work’ is unsettling but it’s reassuring to hear that SCT might be avoidable.
Good luck to you and 🤞 your current treatment remains effective for many years.
Hi I was 17 p deleted and after 2 rounds of treatment went down the SCT route in 2008 aged 58. The 2 main decisions points were my own physical condition ( which was otherwise good) and the quality of the match which was from an unrelated donor and the team went through with me matching point by matching point and again it was a good fit. This gave me the confidence to go for it when I was clearest of disease soon after the second round of treatment.good luck
Hi, I went into the decision making process wanting to know all about the pros and cons . The transplant centre at Leeds were clear about the window of opportunity following the second round of treatment as well as the poor prospects for 17 p patients . I had relapsed about 18 months after the first round ( 6 courses of FCR) The closeness of the match from an unrelated German donor helped me to make my mind up quickly.
I think nowadays there are more alternatives in particular CAR-T which I believe Leeds are now using for some , but I would do a personalised risk assessment , look at the track record of your transplant centre ( hopefully near to you), to make your decision.
It was certainly the hardest choice I’ve made since being diagnosed in December 2010 at age 45. I was stage 4 and began 6 cycles of FCR a few weeks after….I also have the 17p deletion mutation, Trisomy-12, and I’m unmutated. In the last almost 11 years since then I’ve relapsed another 4 times, my treatments have included Ibrutinib, Venetoclax/Rituximab combo, allogeneic stem cell transplant, Venetoclax again as well as 2 Donor lymphocyte infusions (attempt to repair the failing transplant), then to what I’m on now Idelalisib. My average time to treatment since beginning Ibrutinib has been between 1-1 1/2 yrs, so we are already working hard to figure out next steps.
CAR-T is one of those potential next steps, however my transplant complicates this as most trials require my transplant donor to donate his T cells (which is no longer possible), only one trial so far would be willing to use the frozen ones that come from my leftover Donor lymphocyte infusions. As the off-the-shelf version of CAR-T develops that may potentially overcome this challenge, but as things stand now having had a transplant boxes me in.
In fact if at all possible, I would would look at the possibility of doing CAR-T first. Something to consider….
If you wish to read a little about my transplant experience you can look up my wife’s posts under NMMP. Also if you would like to reach out to me to discuss my experience further please feel free to do so within the private chat option on the site.
I'm not sure what treatments you've tried, but my husband was 38 when he was diagnosed and has been in remission for 6 years after participating in the clinical trials for venetoclax. He had the 11q deletion. You might ask your doctor about it if it wasn't one of your previous treatments. Brst wishes!
I don’t know your mutations or other risk factors, but to me your statement of quick relapses weights heavily for a HSCT at the earliest convenience. The disease will not become less aggressive with time and it seems all new therapies do have patients that progress. Maybe there is hope forBiTE or other immune modulators going forward but for aggressive disease it seems the best modulator is still a new immune system.Advances on HSCT are continuing and evolving, they learn constantly how to do this better and the risks are coming lower and lower.
The remaining treatment options are also not off the table as soon as you have been through a HSCT, what is limited is access to clinical trials, especially for some CAR-T treatments, and also BiTE trials. So it might be worth to see if any such are worth considering before a HSCT, as there’s been some thoughts they can be curative. At some point these treatments will be approved, then HSCT might not limit any longer, but that would depend on the approval.
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