I have post-PV Myelofibrosis and am getting to the stage where I can see transfusions looming and therefore my best chance for stem cell transplant (SCT) will soon be gone.
I have so far resisted SCT because the outcomes are so unpredictable (especially if u don't have a related donor, which I don't), the practicalities tricky (no dogs allowed, 3 hrs drive from hospital, need for carer etc) and the process nasty. However, I was hoping for 5 years of decent quality of life before I reached the transfusion stage and that doesn't look as though it's going to happen. So I am having a final review of SCT
My question is about outcomes and complications of SCT. Does anyone know of a good study that tells me not just the basic statistics about mortality and rejection, but how good the quality of life is for those who survive? The impression I get is that a lot of people are still having to go in and out of hospital, or don't feel that great, largely as a result of GVHD but for other problems too. And if you have have a SCT what was your experience of these things, or anecdotally what have you heard?
I have visited my nearest STC centre and asked about statistics but they don't seem to have much apart from mortality and rejection.
Thanks in anticipation
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jane13
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I can’t help with your questions but I am sure others will.
I just wanted to send you my love and very best wishes and I am sure you will come to the right decision. I can only imagine how hard this will be for you. You are one of us ‘oldies’ on the forum and have always been there with relevant advice for others, so I do hope the replies you get will help you.
I don't know! I had the usual genetic reporting from my first BMB, which showed no CALR but Trisomy on one gene and something else I'd need to look up. Does this make a difference to STC outcomes?
Certain mutations imply a poorer prognosis. A minority of MF patients have these mutations but a positive test usually means that SCT is advisable at Interim Stage 1 rather that Interim Stage 2. ie it’s a factor that would steer you towards earlier rather than later SCT.
I posted a video by Dr Jeanne Palmer last week which explains this much better than me!
This is the video, scroll down to Dr Jeanne Palmer. I thought quite reassuring, especially re chances of serious GVHD (not to underestimate that this is still a major hurdle)
She discusses how poor prognosis mutations such as EZH2, ASXL1, 1DH2, SRSF2 are more successfully overcome with early SCT. ALso she would tend to advise SCT at the point patients start receiving blood transfusions.
Did the SCT Centre advise you have a SCT now? What were their figures for mortality and rejection? One would hope that any five year statistics are out of date in view of evolving treatment improvements.
Hi Paul and thanks for re-posting video which as say was interesting re GVHD
It's not the mortality and rejection rates I am after, nor the timing - have got that - it's what "the new normal" looks like after SCT! Amazing lack of data on this.
Hi Paul, just to Thank You for your relentless pursuit of data on all our behalfs. It's good that you put it out there for us to digest and I think it helps to show that much good work is going on by MPN Specialists to not only find drugs to help but also to try and reduce the risks of having a SCT. And who knows maybe eradicate MPNs altogether in the future.
Sorry to hear that you need to be considering SCT also. Quality of life afterwards is the important question that statistics do not answer very well for me either. I guess that is because it is a lottery and we won't really know how we would feel about our new situations until we were there. Still early days in the decision process for me. Will let you know how it goes.
We are very fortunate that Chris, Chris and Gary are active posters - thanks guys, reading your past posts have been a very valuable source of information and are much appreciated!
Hi Jane. As others have said, I’m afraid I don’t have any knowledge or advice to give you . But just want to send my thoughts and hope you get the advice you so need to make your decision .
Hello Jane, Just sending you some love ,whatever you decide will be the right decision for you. I wish I could be of more help to you. I know you will get more help from the wonderful people who have already been throuh this process when they see you post.Love Gill
Hi Jane 13. I am one of the two Chris's that have been down the SCT route here. I have been lucky in that my GVHD was relatively light and I am now seven years out from SCT. The jedireject Chris has had significant issues with GVHD but is pefectly capable of talking for himself. I have spoken to numerous potential and actual transplantees and have many as friends. Some have had limited GVHD while others are chronic, but most are still alive. Some who did not transplant, or left it too late, are not. Dr Jeanne Palmer's (I met her in Denver two weeks ago) presentation is excellent but as you can see they can't give definitive answers on outcome and liklihood of GVHD although following her rules on behaviour are very important. Not everyone can have SCT but, if it is potentially in your future, it is important to find out about what it means to you and what your risk factors are, so that if it becomes an imperative you have enough knowledge to make the decision. I am normal, if I ever was, and run, ski and Kayak while doing the odd bit of worldwide travel, but others might not be so lucky. To me transplant was a no brainer. Jakafi did not exist as a complication. I did not like what was happening inside me and being IR2 I had a 2-8 (median 5) year prognosis. I went from diagnosis to transplant in 8-9 months. Happy to answer any questions. Drugs help with symptoms but do not cure. MF ultimately takes life although it can move slowly or quickly. SCT is the only potentail cure and the doctors are getting better at it as they learn more. However, luck is still a key factor in the outcome and post effects. Chris
As with Chris an SCT was a no brainer for me (MDS-U + MF, JAK2 -ve; diagnosis to SCT 16 months). I was also frequently told that taking the move while I had the necessary strength to handle it was recommended. I had a non- related SCT.
Was my 'quality of life' improved ? Yes
I had acute and chronic GvHD, 3yrs after transplant still have aches and pains and mild skin issues, however it mustn't be forgotten that I'm 4yrs older than when I was diagnosed so perhaps there is a bit of natural 'wear and tear' also. (The aches and pains are probably also due to the high doses of cortisone I required to stop my extremely rapid decline in health before my SCT).
One has to be honest as well, the degree of GvHD is difficult to predict and treatments are improving all the time (for example I personally benefited from Jakavi in my combat against a liver GvHD since the cortisone didn't do the job).
I agree it's not a simple decision to make and 'statistics' can only give a part of the picture.
Hello Jane , , I'm sorry to read that you find yourself at this difficult point in your MPN journey but seems you're asking a damn good question at the right time to help you go forward and you have had some excellent replies thus far. But it can't be under-estimated how hard the decision is when you think you may have more time in hand. It certainly was for me at stage intermediate 2 on the DIPSS scale. But Ruxolitinib wasn't working fully and I was high risk of transforming to AML. And my Sister a 10/10 match. So a tough decision made a little easier but still a step into the largely unknown for me.
I've said before that as far as I'm concerned there is nothing to fear from the Transplant process itself. I had a Reduced Intensity SCT and this is likely what you would have. Modest chemo and no Radiotherapy.
It's well documented here that I had Stage 4 GVHD even with a sibling donor. I know people who fared better with a Matched Unrelated Donor or MUD Blood (so thats where JK Rowling got it from). There are just a few of us at my clinic with such severe GVHD and you are really unlucky if you get it bad.
My friend has 3 dogs and she kept them at home after her transplant. She didn't let them lick her or clean up their toilet. My dog stayed with my sister for a couple of months, but mainly coz I was back in hospital with GVHD 😷.
Looking for stats isn't going to tell you much really coz we are all different and most Transplantees don't have MF but other types of Leukemia so you aren't comparing like with like.
My quality of life is a bit worse than before and I'm left thinking that SCT is a bit of a lottery, you pays your money and takes your chances. I've had everything but the kitchen sink thrown at me and I'm still here without MF so I know there are reasons why not to have SCT but having the opportunity to save your life surely trumps them all.
Thanks Chris, I have read lots of your posts before, but hadn't realised u had a sibling matched donor: that would have been a significant positive for me. Very best
I have primary myelofibrosis. Like you I’m in the transfusion zone now and I admire the calmness with which you are considering the possibility of a SCT. The lack of data about how many people actually end up with as good quality of lfe as they had before the transplant, let alone a better one, doesn’t help in making the decision.
Transfusions - and I’m having my third next Tuesday- make me feel better for a while. So by having a transfusion I’m gaining better quality of life now, while reducing the chance of a successful SCT in the future ( if such exist). For me at the moment that feels like a better bet. Jam today .
If you do find out any solid information about SCT experiences would love to hear it.
yes, I think I belong in the "jam today" camp given no better outcome predictors or statistics for SCT, if only I can get my bone pain under control.....but that seems to b a big "if" at the moment.
How bad is the pain? What medication have you tried to relieve it? Is it all the time? I’d thought that there were pain relief specialists who could deal with most sorts of pain. But it sounds as tho not .
I get low level bone pain after I’ve been physically active but nothing awful. Yet.
The problem with reading SCT surviver experiences is that by definition those who didn't survive , or are too ill or feel too awful to write don’t get to tell us about it. So its a very biased sample. Even on this forum people feel diffident about saying they are having a bad time.
Still, there’s no doubt that for some people having a SCT has been a life giving and life enhancing choice. That is, they’ve had /are having a longer life of a quality worth having .
am now on morphine, hopefully short term while I wait for urgent gastro referral (to try and sort out stomach so that i can take anti-inflammatories, which seems to be what's needed but currently stomach pain from ulceration as bad as bone pain!) and routine referral to pain team. Am experimenting with morphine at night and paracetamol during the day. Need to keep morphine to minimum, not least as it makes me dozy during the day.
Hi Rachel , accept what you say but in my experience being an orphan disease there appear to be very few MF /MPN Transplantees in tbe UK , so the reason we don't hear from them is likely they don't exist in numbers. I haven't met anyone else at my busy clinic with MF. And though I've known several peops who have passed they had a very immediate need for transplant and there chances were low or there disease came back very soon after. MF is different as it's progress is tracked and it gives you the luxory of making an informed decision.
It may be different in the US where numbers are greater but even then peops die of other things rather than their MF. I recall they had good numbers for the Comfort Jakafi trials but a good percentage died during it, whether from MF or something else or whether they were Transplanted wasn't noted.
I don't mind admitting I've been to hell and back as I've been unlucky but at least now I feel more confident in seeing my Grandkids grow up than if I let things ride . My fear was that I would leave things too long and miss my boat.
Just to add there is a Bone Marrow and Stem Cell Transplant Survivors Club where I'm sure there will be much anecdotal evidence of quality of life. I will say that most successful Transplantees do have the same or a better quality than before having rid themselves of a debilitating or immediately life taking disease.
Very interesting thread!! Wouldn't things be so much easier with a crystal ball!
Earlier in the thread I stated it was in theory a 'no brainer' for me; however even when I knew deep down that things were going to end up with a SCT it was difficult to resist the temptation of 'jam today' approach, especially as one of the specialists I consulted said just that.
My wife seeing my anxiety told me 'if you don't want to, don't do it', I told her I just needed a little bit of time to come to terms with the decision and talk through with the consultant. She didn't fully understand the stress involved.
Let's be honest, the SCT 'treatment' is a one-way ticket - unlike other pill/injection treatments you can't go back or change treatment.
Once I made my decision though, I went for it wholeheartedly.
My heart goes out to you and fingers crossed for whatever decision you make - do what you think is right for you.
Well put and very much the same for me Gary , possibly the hardest thing was signing the consent forms but as you rightly say once I made my decision I was wholly committed to seeing it through come what may and to follow all instructions as required of me.
One of my care team said that some peops on day 1 say "I don't do tablets I can't possibly take all those " and every step forward is a battle of wills. But t o get the best possible chance of a good outcome you must be determined.
With summer on the way thinking of you and hoping you'll be able to make the most of it - perhaps after almost 3yrs of 'struggle' things will a little easier. Make the most of the grandchildren - it's those sort of moments that make it all worthwhile.
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I have spoken to numerous potential and actual transplantees and have many as friends. Some have had limited GVHD while others are chronic, but most are still alive. Some who did not transplant, or left it too late, are not. Dr Jeanne Palmer's (I met her in Denver two weeks ago) presentation is excellent but as you can see they can't give definitive answers on outcome and liklihood of GVHD although following her rules on behaviour are very important. Not everyone can have SCT but, if it is potentially in your future, it is important to find out about what it means to you and what your risk factors are, so that if it becomes an imperative you have enough knowledge to make the decision. I am normal, if I ever was, and run, ski and Kayak while doing the odd bit of worldwide travel, but others might not be so lucky. To me transplant was a no brainer. Jakafi did not exist as a complication. I did not like what was happening inside me and being IR2 I had a 2-8 (median 5) year prognosis. I went from diagnosis to transplant in 8-9 months. Happy to answer any questions. Drugs help with symptoms but do not cure. MF ultimately takes life although it can move slowly or quickly. SCT is the only potentail cure and the doctors are getting better at it as they learn more. However, luck is still a key factor in the outcome and post effects. Chris
MPN RESEARCH FOUNDATION LAUNCHES STEM CELL TRANSPLANT TIMING TOOL FOR MPN PATIENTS WITH MF
Stem cell transplant
