I have been put forward for a SCT, providing a further heart scan is ok. I have Post ET Myelofibrosis, MPL positive, I also have another mutation, which I’ve been told will increase my chances of getting leukaemia. I have pretty much decided I will go through with it, but know it will be very tough. A 10/10 donor has been found, but before things go further I need to wait for my heart scan.
I have been taking rux since October, which has increased my HB from 8.7 - 9.3 & also reduced my spleen size. My question is, that at the moment I feel well, do I go ahead with SCT as soon as I can (thinking about my leukaemia risk), or wait. I would be interested to hear if anyone has been in a similar situation & what they decided.
Thank you,
Shirley
Written by
SRH55
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My advice is to get a second opinion. Having a SCT transplant or not is a huge decision. There are many risks involved, but it’s the only cure. It is a decision only you can make.
I’m not in exactly the same position as you, Shirley, I was diagnosed in 2010 and was on watch and wait until around late 2019 when my counts dropped badly and I was offered a chance of going onto the Manifest trial, I felt I was doing ok but in fact I developed ground glass changes after 9 months (basically fibrosis of the lungs) . Thankfully 6 weeks later the ground glass changes had disappeared.
I was then put on Ruxolitinib only, which unfortunately made my counts drop badly so I had to come off that. My spleen, which had reduced in size when I was on Ruxolitinib, then enlarged and I had bad sweating, but overall I felt ok ish though my counts were not good. So I was offered a chance of talking to the bone marrow team and offered a chance of going through the tests needed to be offered a BMT.
I had the BMT last year and I am around 240 days after transplant, I am pleased to say I am 100 donor cells. The only down side for me is that (unusually, I am told) my spleen has decided to eat up my platelets and I need to have it removed as I am becoming platelet transfusion reliant.
I don’t mention this to worry you, just being honest about my situation.
Anyway, my main point is that despite my counts being low I felt ok and I would say, having been through the BMT it is a tough gig and it is better to feel more well in order to face the battle than to wait until you feel weak. But I emphasise this is just my personal opinion.
I was in a no win situation. I had to come off the trial, Rux was lowering my counts and I had become transfusion dependent.
It was basically go for the BMT if it was offered or wait to die in around a year was the prognosis given by the BMT team. My attitude was this is my chance I need to grasp it with both hands. I’m determined I will beat this disease.
A positive mental attitude is really important and I definitely had it.
It means that my marrow is 100% from my donor which means the Bone Marrow Transplant has worked successfully.
Pity my spleen insists on eating up my platelets and not shrinking, it would mean the whole transplant would be a huge success!
Please contact me again if I can help. I do feel strongly that a BMT is a challenge best faced when you are stronger rather than weaker. It’s not an easy procedure but it’s well worth the effort.
I was primary Myelofibrosis IR2 (intermediate risk two) when diagnosed but no mention of leukaemia, they had me at blood cancer! No patients to talk to, (I was asked to start buddying four months post SCT as ‘we don’t have anyone else’ ) No Rux, as was still in stage 3 testing. So actually less distractions than now to complicate my decision
Given 5 year prognosis and told would have to have SCT within three years. Didn’t like what was inside me and near top age for SCT at the time (was 58) so went ahead. Asap. Diagnosis to SCT 10 months. Started SCT 12 years ago next Monday!
You need to be reasonably fit to deal with SCT. Leaving it as a last minute rescue plan increases the risk. I have met people who have survived SCT for AML but again I believe it is higher risk and AML can move very quickly
Was told 60% ok, 20% relapse and 20% don’t survive but went ahead while fit. You have a difficult call. Ideally you don’t want to be having transfusions pre SCT.
If you MPN specialist is talking SCT then go talk to the SCT team and get their view. Not everyone is suitable or can get a match so it might not even be an option.
Happy to share my story of diagnosis to three months post if it helps.
I have spoken to the transplant team & have an appointment tomorrow with my haematologist. I do feel that a SCT is my best chance, but I do get scared.
As you'll see from my previous posts I've recently been through this decision. My mutations weren't as severe as yours. For my team my general health was good. They weren't so happy about my enlarged spleen. I went through rux to fedratinib which helped some but I still had to have some radiotherapy on the spleen and I see cornflower also had speel problems. You'll also see I regretted my decision at day 21 post sct because I had trouble with nausea. The last few days my neutrophils have improved and i am feeling somewhat better. It is too soon for me to make out whether I did the right thing. When i was pondering I was calculating how many good years I'd have with or without the sct. I don't know how old you are but that and the progress to leukaemia are all things to struggle with.
1 thing is you'll find the process can go very quickly from agreement to having
I'm sorry you have this decision to face. I was in the same position - I felt really well on Ruxolitinib but knew that I was actually a ticking time bomb. I discussed it with Dr McClornan (Guy's) and he advised me that it was best to go ahead while in (otherwise) good health as you need to be as well as possible to go through such a gruelling process. Good luck, Jennie
I'm pretty well thank you. Still fatigued but managing a walk every day. I have had skin GVHD, but that has cleared up. I've had a (probable) UTI involving a trip to A&E, because after an SCT NOTHING can be viewed as trivial! But generally I am well and improving with stable blood counts.
The doctor on my side suggested that the SCT of MPN usually switch to when it needs frequent blood transfusion, or when it needs to be transferred to MDS, and the bad cells may be coming soon. This is a good time node.
Congratulations, you have been cured, at the same time.
I spoke to my haematologist on Friday & she is going to arrange for me to speak to Dr McCornan. Feel it will be good to get another opinion, although I have pretty much decided to go ahead with the SCT, tests permitting.
I suggest you wait. SCT is a huge decision with great risks. Although only in this way can you be cured, no one can guarantee your future fate after SCT. As a last resort, please consider carefully.
How did you get on with your hospital appointment? I suppose you have to wait for your results. It is all very scary, but seems like your only option. I think we have to try to be positive & realise it’s going to be a long journey, with a great end result!
I have had some tests, but need to have a spleen scan in a couple of weeks. I have my haematologist saying she wants to aim for the SCT around the summer time & the transplant doctor says possibly next month, so I’ve decided it’ll be done when the time is right (tests permitting)!
Best of luck with everything & please let me know how you get on.
Hi Shirley, thank you for your reply.It went ok yesterday, but as you can imagine, a lot to take in. I think we always have to look for the positives, especially if we can have a longer lifespan.
I've have most of my tests, but have to see my consultant again on Monday, who will probably give me an admission date for my first month of treatment.
The best of luck to you too and will keep you informed.
Hi Shirley, sorry for the very late reply but just read through this thread. Just wondering how your SCT turned out for you? Also was wondering what your mutations are. Mine are Jak2 and Asxl1 and the second one is what they fear is always a precursor to lukemia. I am 69 and not sure I'm even age appropriate for an SCT if I were to contrac that our MF I'm on 135 mcs weekly of Pegasys as platelets are stubborn for my ET. At this level many of my bloods are out of whack causing anemia. But, like our friend Hunter who is active on this site always says he still feels good, and that is my go to positive place over looking at my bloods. If naps, hope and prayers are all I got, I'm a still blessed man!
My mutation is MPL, I am post ET MF. I had my transplant on the 4th August. It was a tough decision made with my family & specialists. I knew it would be a tough journey. I was told if I had a SCT it would have to be before I was 70, I’m now 68, I’m gradually getting stronger & can manage a short walk now. I have a very supportive family which helps. Sending best wishes & a Happy Christmas.
Wanted to offer info that you may want to discuss with your care team that involves dietary considerations. The following link is to a paper that describes potential benefits of enhancing your microbiome ncbi.nlm.nih.gov/pmc/articl... - Gut Microbiota Influence in Hematological Malignancies: From Genesis to Cure
From section 9 of the article / link ….
“Gut microbiota has been studied in detail for the last decade and overall data suggest the great impact of intestinal microorganisms upon carcinogenesis, cancer proliferation, HSCT outcome, and response to anticancer therapeutics. Hence, gut microbiota modulation is an exciting and important field of research that will likely be used as a complement to existing therapies, either to enhance the efficacy of treatments or to diminish first-line treatment side effects. To date, several microbiota-targeted approaches have been used to modulate the gastrointestinal bacterial composition”
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