My husband and I are just back from Southampton after another appointment with my SCT specialist. This was the one where he went through all the risks of the procedure, including the statistic that 20% die. Although I knew this already from Prof Harrison, it was difficult to be reminded. He did say that the greatest danger is to those with significant comorbidities, but that I also needed to be aware.
What I didn't know before was that 30% relapse and end up with Myelofibrosis again, which was quite depressing to hear.
He warned me that, if the transplant is successful, there could be a significant impact on my quality of life from GVHD.
On balance both my husband and I still want to go ahead, partly because Prof Harrison has said that I am a "good candidate" and partly because of the limits of Ruxolitinib and the chance of progression to AML.
It has left us both thoughtful and wishing it would all just go away.
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Otterfield
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It’s true, the statistics don’t look great on paper, but if you turn it around, 80% survive and 70% go on to live a life without MF. I’ve been following you for a while and I know that you’re a strong person with a good support system, and I know you’ll get through this and whatever comes after, you’ll deal with it. Sending hugs across the pond.
Cindy, thank you for your kind and encouraging words. It's such a horrible disease that we live with and I keep an eye on your posts too.Best wishes, Jennie
It sounds like you are on the best course for you, based on your goals and priorities. It is a rough course, but one that offers the closest thing there is to a true cure. One of colleagues went through SCT for MF a couple of years ago. It was tough, but he is doing well and back to a high-quality life. We will hope and pray the same for you.
When I was going through the heart and brain surgeries, this quote was a comfort to me. I would treat it like a meditation.
"I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past, I will turn the inner eye to see its path. Where the fear has gone, there will be nothing. Only I will remain." Frank Herbert, Dune
Thank you for your thoughts and that is a good quotation to keep in mind. When my sister was having breast cancer treatment, a psychologist told her that she had seen more lives ruined by fear than by cancer.
Ah Jenni that was a tough appointment for you both, sobering to come away from I can well appreciate. The pros and cons I guess have to be outlined by the team to ensure complete awareness is given to a patient BUT I very much home in on Prof Harrison's assessment that you are a "good candidate" which is the solid reassuring basis for you to take on board and a strength to keep reminding yourself of. I know Chris in due course will have wise words for you from his own experience but for me I just send every thoughts and care
Hi. I can only imagine how hard the news must be. To be eligible for SCT is such a gift but to hear those facts is unsettling to say the least. But as Cindy presents it it sounds better. Fortunately you’re smart & can make your decision with all the facts known; hard as it is. Wishing you peace with whichever decision you make. Katie
Hi again, just noticed below a post from 10 years ago by a SCT person who acts as a Buddy for patients considering it. You could ask Maz about that if it interests you. Katie
Eleven years ago Clare Harrison said I was a good candidate for SCT and my eleventh rebirthday is in March. Odds given 60% okay after five years, 20% relapse and 20% don’t survive. Some of the latter group don’t survive as they leave it too late or indeed have comorbidities. GVHD is a lottery and I was lucky with a few minor tussles and I know others who have had more significant challenges. But even with GVHD you are alive. It’s a risk but worth it. The prize is life. I think you are heading in the right direction. Best wishes. Chris (with the Princess Leia stem cells)
Hi Otterfield,Very difficult to hear the possibilities of SCT I am sure. I agree with cja post above, turn the percentages around and look at them that way. I think I know what I would do as I do not intend to simply surrender to these diseases. My choices may be limited due to age - 72 currently PV. No one really knows what they will decide until faced with the decision. The thought of living with advancing MF or AML is not a cherished one for me. You obviously have a good handle on the decision ahead and whatever you decide will be the correct decision. Best to you and yours on the road ahead.
Hi, again. After reading Meatloaf’s message, I just remembered what doctors have told me about percentages. (For me this information has been very helpful with a few of my health problems.) Those statistics may not be accurate to your situation. They include patients who don’t have top doctors, procedures aren’t done in hospitals with much experience, patients have comorbidities and other negative factors like age, lifestyle, etc. If you want, you could ask your specialist (or Claire) how you compare to other SCT patients. Sounds like Claire Harrison has done this already but perhaps without giving you the reasons you’re a good candidate. I have read of patients who choose SCT who aren’t good candidates but decide the risks are worth it to them. Katie
Thank you Katie, that is a very good idea and I am having a telephone consultation with Claire or one of the team next month. Apart from the obvious MF I am in good health.
Oh bless you both you have both had a long day it may take a few days for all the information to sink in rest up and sending good wishes your way Poppy xx
Hi Otterfield, I can clearly remember being told the stats on surviving SCT and then afterwards thinking exactly as Cindy did and looked at the odds as 80% survival which sounded much more positive. Your Dr is duty bound to state the risks to you and as such it can perhaps sound more doom laden than it actually is. Purely from my perspective at the time it seemed a 'no brainer' to me and I was enormously relieved when my consultant agreed to arrange my SCT. I wish you all the very best going forward.
Hi Jennie, , I recall having 'THE conversation' which is only right and proper that the risks of the SCT procedure be laid bare given its many variables and unpredictable outcome. I spoke with someone recently who is doing well following a haploidentical transplant from a half match donor because there was no alternative.
As for GVHD well yes it's another risk but again it's only a handful that get it as seriously as I copped for , being Stage 4. In 2 or 3 years attending the Unit regularly I knew of only a handful of us with life threatening GVHD and treatment for it has come a long way.
As far as I'm aware most get only a fairly low grade hit Stage 1 or 2 which results in a rash , soft tissue inflammation or possibly impacts the liver. All treatable.
It's not something to fear necessarily because it demonstrates your Graft is settling in.
And it's true that a small number can relapse , but it is a small number for MF because there aren't as many with it going to Transplant. I don't know the odds and it never crossed my mind.
Finally just to pick up on your last comment about it going away - I felt just the same on and off for years. In fact many years ago I was waiting in the Oncology Unit and a guy I used to work with was there. I asked what was wrong and he said bowel cancer. I said I'm was sorry to hear that and he said well they've caught it early I'm coming in next week for an op to remove a small section and I'm having a bit of chemo then should be ok.
Now this seems wrong of me but I recall having cancer envy. Because what we have consumes your life and I knew I would have MF for a number of years more unless I opted for SCT early. Unlike my ex colleague who had a 3 - 6 month blip in his life and then hopefully put it all behind him. Though I know he was one of the lucky ones who was detected early.
It was also the fact the decision was taken out of his hands and made for him and his treatment almost immediate, if that makes sense.
Anyway Saturday will be over if I don't stop going on. Try and enjoy your weekend and do something distracting if possible.
Thank you Chris. Your words are very helpful and encouraging. It is so valuable to have the perspective of all of you who have actually been through this.I understand what you mean about cancer envy, even though, as you say, it seems so wrong! Having to make this huge decision ourselves is very stressful.
Hi Jennie. It’s a sobering conversation to have and with me it really made me stop and think whether it is worth the risk. I like Cindy’s approach and flipping it around. Also I am of the mindset that I am not going to get any better by not taking the option and dread the thought of just getting more and more unwell and a declining quality of life. So I hope you are able to settle your mind over the coming days and find some peace with your decision. All the best. Garry
Well put Garry , , It's sure a tough one to face but much easier if things kinda fall,into place (timing, drug options, donor, self belief etc) so some of the decision making is largely made for you. And as in my case you reach a point where there's no going back only forward with a Que Sera Que Sera outlook. I was determined to rid myself of MF at any cost and indeed it very nearly cost my life via GVHD , but not quite !
I know it's easy for me to say all this having been there and done it and as you might know I didn't have an easy time of it by any means but I'd face it all again if I had to in a heartbeat. As the other Chris on here who s a tremendous role model and SCT advocate oft quotes ' The prize is life' .
You have hit the nail on the head Garry. We simply don't get better without this major intervention and I don't want several years of waiting for my haematologist to one day tell me the Ruxolitinib is tapering off or that I am drifting towards AML. I am definitely not a natural risk taker but we have no choice but to choose our risk. Best wishes, Jennie
My heart goes out to you, Jennie. I have recently discovered a book on meditation which has really clicked with me…my past attempts at mindfulness and meditation have been rather short lived and unsuccessful. The author is Paul Wilson, he wrote The Little Book of Calm which catapulted him to fame as the guru of calm. He has many books but I have just ordered ‘Calm For Life’ as it mentions, longevity and illness. There is a lot on him if you Google and his books can be found on Ebay…very inexpensive. My first discovery of him was via the audiobook ’The Quiet’, which was free via our library app. I liked hearing his gentle but authoritative, no nonsense voice and teaching skill directly. He also has a very brief couple of videos on YouTube.I sincerely hope his work resonates with you and helps immensely.
Oh, yes, absolutely. When you say something like “it is such a horrible disease” I empathise 100%. It is a unique and an extremely difficult position to live through. May you be strong and find some peace.
There is little I can add to what everyone else has said. Just know that I am thinking of you and follow your posts keenly. As I have said here before, yours is a path I think I will be taking at some point. And you are very fortunate that you are in the best of medical hands and being offered the chance of a cure.
Deciding when to time a SCT must be the most horrendous dilemma and I’m so sorry that you are now at this point. It sounds like you are being very pragmatic.
I assume the 80% is a historic average and therefore slowly improving all the time as our medics fine tune treatment options. Sadly I’m not aware of any major advances but an SCT now must be safer than say 5 years ago.
Yes I assume all these statistics are retrospective and the ones most at risk are those with other conditions too. Nevertheless it is scary. Thank you for your thoughts. Best wishes, Jennie
What a tough discussion, but I am am sure you and your husband will work through this. Thanks for sharing your hard journey and great to see the support you are getting from this group through the ordeal.
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