Big decision and confused
I am just about to have a final third round of chemo before SCT which will be in a few weeks time at a different hospital. Following the secound round I was 100% in remission, but an flt3 marker indicates I will relapse sooner than later. I have had consults with the stem cell team twice now and the information has really confused me. The mortality rates for having and for not having SCT seem quite close.
I am coming up 68 yrs old and and am considering enjoying a few years (possibly) of good life now (without SCT) rather than going through the process and being 70 before I am fully recovered. As a musician and husband I want to enjoy life .
I would welcome any advice and clarification.
Hi John and thanks for posting.
I was probably in a similar situation regarding the risk of relapse once the chemotherapy got me into remission as I was also viewed as being at high risk of relapse. was in remission after the first round of chemotherapy and had two further rounds of chemo after that before my transplant.
For me I wan't given the option of whether to have a transplant or not, but I don't know if my age was a factor in deciding that. I was 46 years old when I had my transplant so I guess the decision was based on my life expectancy following a transplant versus the risk of my Leukaemia returning if I didnt have one.
There is no doubt that a transplant is a big undertaking and certainly a daunting prospect given all the information we need to take in about the chances of success, risks and side effects and so on.
I've had 10 years of post transplant life and am leading more or less as normal a life now as I did before I had my treatment and transplant. There is no way of knowing whether that would be the case if I hadn't had the transplant or whether I'd still be alive.
I can imagine how difficult a decision this is for you and I'm not sure I can recommend a way to decide which path you should take. There will be a lot of factors to weigh up, including your health going into the transplant, the chances of success, the risk of relapse without the transplant, the quality of life with or without the transplant, and of course the thoughts and wishes of your family and loved ones. If you didn't have the transplant and you did relapse what would be the anticipated success rate of getting you into remission again.
It's difficult to comment further as our ages are the main difference, so for me with 10 year old children at the time of my transplant I wanted the best chance of being able to see them grow up and I was happy to take the transplant on. I hope others on the forum who might be older than me and closer to your age might be able to give you some insight into their circumstances.
Thank you for your post. I realise that must have been very difficult for you to share with us.
I have a response for you from my Anthony Nolan colleague Bindu:
Dear Mr Shapter,
I’m Bindu, the Head of Search and Donor Liaison here at Anthony Nolan. Thank you for your query in our Forum.
Firstly, my primary recommendation is to absolutely connect with your team on your particular questions and any personal preferences since they are apprised with your history and other critical clinical details to weigh in on such questions to inform your decision.
Secondly, in clinical practice and evidenced by many studies including those taking an analysis of retrospective transplants, age of a patient over 60 certainly plays a role on the outcomes of transplant for AML with FLT3. I am pleased to hear you achieved a full remission after second round of chemotherapy, what is often called consolidation. Identification of the FLT3 marker does indeed put you at higher risk for relapse and it is the good judgement of your team to offer you a third round of chemotherapy. Over the years with new therapies, including better maintenance regimens, there have been favourable outcomes post-transplant. Although there are increased risk of side effects and adverse effects from transplant in older patients eg infection risk, treatment related toxicity; there is also increased risk of disease progression and mortality including without transplant. Although one cannot ignore the possibility of post-transplant side effects including GVHD which can impact daily functioning.
Allogeneic (from a related or unrelated donor) transplant remains most effective for post remission therapy for higher risk AML. This has been evidenced in studies and by professional cancer networks with the key consideration for reduced intensity chemotherapy before the transplant to decrease the toxicity risk, particularly having already received chemotherapy. Although there is greater long term survival with transplant over consolidation chemotherapy alone in patients over 60, the choice of transplant is always striking a balance between the risk of toxicity/treatment related mortality and the positive effects of transplant that can reduce relapse. With age being one of other factors, it is better understood how to manage therapy to reduce any risks associated.
At the risk of not offering clarification, it is true the exercise of balancing benefits with the risks, including against any personal wishes in light of these, is one to be had by your clinical team. Offering some evidence further here is in hope to inform your decision with your transplant team.
Thank you for making touch and please feel free to share any further questions in the Forum.
Thank you, its all about quality of life and for how long
Thank you Bindu, I`m in close discussion with the team here now but all input received with gratitude.
I’m sorry you’re in this position. And what a dilemma for you. I had a SCT for AML in 2015, when I was 61. So a little younger than you are now. At that time I refused to discuss success/failure rates with my clinician. I felt that people of my age all come with some ‘health baggage’ so it was impossible to predict how well, or otherwise, I would recover from the transplant compared with other people in my age group. I also thought the success rate for me was ultimately going to be either 100% or 0%, so any other figures seemed a bit irrelevant.
The transplant process and recovery certainly cannot be downplayed, but one thing I have learned from this forum is that it appears impossible to predict how good or straightforward a recovery people may make. I have been pretty fortunate overall though, which might colour my view somewhat.
I always felt that if I hadn’t gone for the transplant and I hadn’t survived then my family would always have wondered “what if…..” And I would also always have had the anxiety associated with relapse hanging over me.
But it’s a really personal and difficult decision, which only you and your family can reach. I wish you lots of luck with whatever you decide.
Thank you for the replies, I don
t expect a definitive recommendation because everyone is different and circumstances vary so much. The more narratives I hear about others experiences, the more data I have for a decision. Hope that makes sense.