Hello! New to this forum and desperate to know if there is anyone who has been in a similar dilemma to mine. I’m 69, fit for my age, and was diagnosed with MF early this year. I’m taking Ruxolitinib as a result. It’s doing a good job, and I’m getting virtually no side effects - in fact, diagnosis aside, I’m feeling pretty much my " normal"… how lucky am I ! However, in addition to Jak2 , I have 3 other genes that are doing their best to slide me into Acute Myeloid Leukaemia. My current fitness level have given me an opportunity to have a stem cell transplant and I will soon have to decide whether to go ahead.
It looks a life-changing procedure, not pleasant, and not exceptionally good odds of recovery ( especially for someone in their '70’s. ). Can anyone give me their experience of making the decision to proceed…or not… and what the outcome has been? It feels bizarre for me to decide to agree to the transplant process when today, I don’t feel ill !
Thank you to anyone who has read this long note.
Hi @GingGing a great big welcome and I hope someone will be able to assist with their experiences. It must be a dilemma for you.
I will also copy your post to the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses and the Blood Cancer UK support line is there for you 0808 2080 888.
Perhaps get a list of questions for your medical team ,so you feel that any decision you make you are comfortable with.
Look after yourself and please keep posting
Hi @GingGing
I have had 2 stem cell transplants for myeloma
I was 49 for the first and 54 for the second
I won’t sugar coat that they are easy to get through but are doable.
Some people go through them with a minimum of bother
My first transplant I was pretty poorly through the three weeks and said never again!! I was adamant I would never but I did
My second transplant was better in comparison
Basically a transplant is destroying your immune system with high dose chemo putting your cells back in and waiting for them to rebuild it again.
It does comes with side affects but treated quickly by the nursing team
Happy to answer any questions that you may have on your mind even the hard ones if I can
Hi @GingGing and welcome to the forum. I can see @2DB has shared experience with you.
I can imagine it’s a tough decision, made harder by you feeling so well.
I can see @Erica has copied in the Blood Cancer nurses it may help giving the support line a ring to.
Please keep us updated on how you are getting on X
Thank you so much. I shall get as much info as possible and post my progress
Hi @GingGing, thanks for posting and sharing this, I do hope you’re alright. You might find this thread useful to have a look through - Awaiting or considering or had a stem cell transplant, a place to share here - Going through treatment - Blood Cancer UK Forum.
We also have this booklet which you’d be so welcome to order for free - Blood stem cell and bone marrow transplants booklet | Blood Cancer UK Shop. Some people find them useful places to write down all their questions and take along to appointments with them too.
We’re only at the end of the phone/email if you want to chat things through. I do hope you find this forum a useful and supportive space to share how you’re doing.
Hi, I’m 62, I was diagnosed with multiple myeloma October 2022. I had a stem cell transplant 18th May (this year) and while you wouldn’t do it for fun, it wasn’t as bad as it might have been and I’m feeling really good at the moment. Good luck xx
Nuala
Hi @Nuala welcome to our forum and you seem to be doing so well after your stem cell transplant in May.
I look forward to hearing more about you.
Really look after yourself as you and your body have been through a lot emotionally, physically medically and practically.
Be kind to yourself
Hi @Nuala and welcome to the forum. It’s great to hear that you are feeling well. It must have been a tough time X
It was, being in isolation was tough at times, food was a problem because I had no appetite but I felt fortunate to only get a painful throat for a few days, no mouth ulcers or those kind of problems. It seems so long ago now! Since my diagnosis I’ve made a point of only looking forward, not dwelling on the past, and not allowing “why me” kind of thinking - why not me? It works for me, keeps me positive.
Nuala
Hi GingGing I would also be very interested as I am going through the same process with my Myeloma. I am 75 fairly fit about to start 3rd cycle of chemo and need to decide if stem cell now or later is right for me for the same reasons. If I go for stem cell it will probably be after my chemo as to have it frozen for later will still require another 5-6 months of chemo beforehand - so may as well as have it now. Also if needed in say 3 years I may be too old.
Hello Myelomapat. I hope your chemo isn’t too hard on you. It’s a difficult decision, isn’t it? STC seems to me to be such an extreme treatment, with so many months not being able to join in with friends and have a “normal " life ( pain and discomfort aside !).
Whilst I’m still at the stage of having been diagnosed, but having no severe symptoms, and not yet scheduled for chemo, I’m lucky enough to be continuing life " as usual” and sort-of hoping that scientific advances will enable me to carry on as I am, and just take a pill ! I’m on Ruxolitinib, and so many articles that I’ve read, point to it having a positive effect on a variety of MPNs…
Today ( I change my view almost daily ), I’m inclined to ask my team if I can defer the STC - but like you, am worried that if the time comes that this is my only option, I may be considered too old.
Do any of us, at our stage in life, really want to just notch up big numbers on our gravestones, but have years of pain and possibly isolation beforehand? Oops - that seems rather “deep,” but I’m just typing away.
I hope someone can add some comments to this “thread” that you and I have written because I, for one, have no idea what decision to take !!!
Hello @GingGing, You raise some very relevant questions. I went through similar discussions with both my husband and my haematologists at the end of 2019. I was diagnosed with Acute myeloid leukaemia (AML) coincidentally, on a routine blood test. It was assessed as high risk on bone marrow genetics. I was admitted for two rounds of chemo and can honestly say that I felt entirely well throughout. The worst thing was being in an isolation ward for almost five months because the chemo made me flat neutropenic. It was recommended that I had a donor stem cell transplant, with a quoted mortality of 15% at six months and 20% at one year. As you say, the high risk of the procedure, and the number of possible complications, and the long recovery period seemed a lot to take on. I was inclined to take my chances and enjoy what life remained (I was told 20-30% chance of living one year) with my family, and doing things I had planned. I was strongly encouraged by all the doctors to go ahead with the transplant (I should add that I’m a doctor too, but no longer practising, so I had vivid images of ending up on ITU for weeks).
I’m glad to say that I did go ahead with the transplant in Feb 2020 and everything went very smoothly - I was discharged after 17 days. I did end up with chronic skin Graft-versus-host-disease which eventually resolved completely with ruxolitinib. The ruxo did make me immunosuppressed so I ended up semi-shielding for Covid longer than I might have done, but I’ve now had a good antibody response to my last booster vaccination.
I’ve recently survived a bout of PCP pneumonia without needing hospitalisation, so all in all I’m so pleased that I went ahead with the transplant.
I’m sure you’re aware (but it’s not always clear on the forum) that the risks associated with allo Stem cell transplant (donor cells) are much higher than auto (your own cells), not least because you have to have big doses of immunosuppressants after an allo.
Good luck with whatever you decide. You could ask your team whether they would be influenced by age if you decide to defer.
Hi Diana - and thank you for such a helpful reply. Although you haven’t “sailed through” the process, it seems to have been successful, and I am really glad for you and your family. So many other people posting on this forum seem, like me, to have been diagnosed out-of-the-blue and must find it equally difficult to make a decision to start on such an invasive treatment when we don’t actually feel ill !
Yes, @GingGing it must be so difficult to make such a big decision when you don’t actually feel ill.
Look after yourself and if you would like to talk anything through the Blood Cancer UK support line is there for you on 0808 2080 888.
Please let us know how you get on and be kind to yourself
Hello @GingGing
I’m so sorry you have this awful dilemma, and an MF disgnosis.
If it helps, my experience has been: I was unaware I had myelodysplasia, until at age 50 it tipped over into Acute myeloid leukaemia (AML). I didn’t feel terribly ill at this point, but did get some symptoms investigated, which led to the diagnosis- which then hurled me into isolation, intensive chemo, chemo side effects and talk of SCTs. So I understand how it can all feel quite disconnected from one’s very recent realty, and a bit theoretical. It was the chemo which made things all too real for me.
I was given the choice regarding a Stem cell transplant, but it was made clear I’d likely relapse and have no further options if I didn’t go ahead, because I had 3 gene mutations indicating a poor prognosis. Personally, it wasn’t a dilemma for me at all, because my son was only 14 at the time, and I couldn’t contemplate leaving him at such a tender age. I don’t think I actually thought about my age and what years I might have yet to live. And I don’t think the thought of long term side effects bothered me too much, because they seemed minor compared to leaving my son. And having to shield definitely wasn’t an issue for me, because I’m an introvert and can only take so much company anyway (!) We all have such different circumstances and different attachment to the life we might yet have left, and huge differences in what we can tolerate in terms of pain and quality of life.
I went ahead with the transplant, and here I still am 2.5 years later. The transplant was no worse than the two rounds of chemo I’d had beforehand - but I did get very sick ftom those, suffering most of the side effects listed. However, it all passed fairly quickly, and the chemo and the Stem cell transplant were done and dusted in 6 months.
By the time I got home though, my leg muscles had unfortunately wasted considerably and my heart had been damaged from the chemo - but I pushed myself and was dog walking again by the fifth week at home. Exercising heavily 2 months in. Recovered from the heart damage after a year. On holiday for several weeks in 2022. Back to work also in 2022. Nagging my son to revise for his GCSEs. And generally back to normal! There have been a few slight hiccups with shingles, falling donor chimerism and the Epstein Barr virus - but my team helped me through all of those, and these things didn’t hinder life. Transplant teams really are very skilled at managing these common occurences, and despite the very conservative statistics they give you, SCTs have come a long way and are much safer these days. I got through having my bone marrow and immune system blasted into non existence three times during a pandemic, as did many of us here. I think that says a lot about the efficacy of the precautions taken, and the treatments given, to get patients through a transplant. And I’m so thankful I’m still here. It was 1000% worth it for me, to nag my son for many years yet. And my quality of life was quite soon 10/10.
I hope all these bits and pieces help as you mull over your situation. And it might be useful (if it still exists) to fill in Blood Cancer UK’s treatment questionnaire that is on this forum. It asks you lots of questions about whether you would prefer a treatment that gives you 6/10 quality of life, over a treatment that gives you longevity but perhaps 4/10 quality of life etc. It really helps one to clarify what is important. Perhaps @Alice_BloodCancerUK has the link? Or was this a Leukaemia Care questionnaire… ?
All the very best.
PS. @Alice_BloodCancerUK. Maybe that could be a slightly different tool that Blood Cancer UK develops? Something that helps one to weigh up the treatment options and to identify what’s important?
Jumping on this thread really inspired about your experiences of Stem cell transplant , I have Non-Hodgkin lymphoma (NHL) whilst not fully known yet I have some new lumps and bumps and I know that often treatment for late relapse can be Stem cell transplant so these experiences are really helpful for me.
Hi Fullofbeans. Your detailed description of your experience is REALLY helpful - and poses so many questions that I will put to my team. Your suggestion of a questionnaire, to help people like me to be more clear in their minds as to what they expect from an outcome, would be truly helpful. I’m listing Pros and Cons daily…weighing up longevity against quality of life. Thank you!