Transplant at age 68 or not

[Bullace]

I've had myelofibrosis for about 30 years and been on ruxolitinib successfully for about 8 years. We have just moved to Scotland and my new consultant has laid it on the line that rux doesn't go on working for ever and my only other option is transplant. This seems right to me but I am very nervous about it. Clearly it would be better to go for it now while I'm reasonably fit and well but I'm scared. I would really appreciate your comments and experiences to help me decide what to do. I know everyone's experience of this disease is different and what might apply to one person might not apply to another!

[westlieght]

Hi I don’t often reply but feel for you in making a difficult decision life changing or not ? I feel your right to feel nerves when I asked my specialist if I should have stem cell transplant his reply I don’t want to kill you ?am 64 am transfusion dependent every 5-6 month going along nicely at the mo !we are all on a same but different path each of us has to make his or her own decision with the best advise we can trust from the best on offer if I was asking go to professor Claire Harrison London

Best wishes

[Bullace in reply to westlieght]

Thank you Westlieght for responding sympathetically. I have been seen by Claire Harrison and she and her team are amazing but I feel I'm just beginning to reach the crunch point when drug therapies might stop working and decisions need to be made.

[socrates_8]

Hey there Bullace...

It's a hard call either way... I am Post ET /MF w/ ASXL1+ however, between my anti-inflammatory diet & exercise "Cycling" regime, I'm still travelling along reasonably well for 62yo, & I am in no hurry to go down the ASCT route just yet...

However, here in Sydney, (Australia), one of our members Warwick is 111 days into his recovery, and he's optimistic that things are slowly coming together... His medical team have recently imparted to him that it can sometimes take a tad longer when one has had Myelofibrosis (MF) to have a full recovery...

There are others here too, (like the two 2 Chris's), who have both different experiences w/ there ASCTs. Hopefully, they'll respond shortly...

As you say, all of us have somewhat differing needs & MF journeys, (much will depend on what those needs of yours are of course).

I am however greatly encouraged to learn that you have been taking Rux' for such a long time... (Thank you for sharing that), as I too have been told that taking Rux' will not last indefinitely. I have now been on Rux' for around 4 years, so hopefully, I still have plenty of time up my sleeve... But who knows right?

I am still of the belief at this juncture, that staying on Rux' might last longer than is presently anticipated by some. There are reports of people still being well served after 10+ years too...

In any event, and for whatever you decide, best wishes buddy...

Stay safe & well...

Steve

[Dodders]

Hi, I have previously written a couple of posts about my 'journey' with PV, then MF and a subsequent ASCT. You might find those posts helpful. It is almost exactly 2 years ago that I had the transplant and am now doing ok. For me it was a choice between the risk/benefit of transplant and the seemingly inevitable eventual outcome of not having a transplant given my fairly rapidly advancing MF. If you are otherwise in good health, and you have the run up tests that show no other risk factors/co-morbidities, and you have good donor match, and a transplant consultant agrees the benefit should/could outweigh the risks then the decision will essentially be yours to make. I asked for the transplant to be performed because the alternative seemed to me to be a rather bleak one which was amplified my a deteriorating quality of life; in effect it was a Hobson's choice for me. But, as you so rightly point out each individual's experience is different. I was 57 at the time but had significant co-morbidities such that the consultant was reluctant to commit to my transplant ( he said the 'do no harm' rule was very much on his mind in my case) until I wrote to him expressing my earnest wish for it to go ahead. I wish you all the very best going forward with which ever path you may choose.

[beetle]

I don’t know where you are in Scotland but when I was living near Oban I had a lovely haematologist who told me bluntly that the results of transplant ranged from brilliant to death. She likened the decision to standing on the edge of a cliff and either jumping off and hoping your parachute would open (successful transplant) or waiting to be blown off the cliff at some time in the future. She arranged for me to see the transplant team at the Beatson in Glasgow. I was in my early 60s at the time and as far as I’m aware I didn’t have any other blatant comorbidities and I hadn’t yet had any blood transfusions. At the time they were unable to locate a suitable donor and my sister was not compatible. When I saw the transplant team for the second time the Dr who saw me said that using the cliff analogy I would be jumping with a faulty parachute. I asked her if I was her Mum what advice would she give and she replied that she would tell her Mum not to do it

That made the decision clear for me. It is an agonising one to have to make and people on here have demonstrated how right my initial haematologist was. I decided not to go for it and not to go along the ‘what if’ route once the decision was made. I am now 71, transfusion dependent and having to chelate iron but life in the time following the decision has been pretty good but declining. I am now at the point where Ruxolitinib is not doing a lot of good and I’m seeing Prof Harrison next week to see if she has any suggestions. The wind on the cliff is getting a bit stronger!

To go to transplant or not is one of the hardest decisions you will ever have to make, especially given your age. I hope that whichever way you decide to go you will have the support of family and friends and can rest easy with the decision once you have made it

I hope you don’t see this post as negative. I am just one person who, given my unique set of circumstances, decided to wait on the cliff. I most sincerely wish you all the best in making the decision that is right for you

Best wishes, Jan

[Mag46]

Hi Bullace, I'm in a similar situation, 60 years old, with post PV MF since November last year, on Rux since Feb, and I've had my first consultation about a transplant. It's the biggest, scariest, decision you're ever going to make and I love Beetle's 'cliff edge' analogy. Personally, I've decided to go for it while I'm relatively healthy and have no co-morbidities, but it is a personal choice and I wish you well with making it.

[Bullace in reply to Mag46]

Thanks for your supportive reply Mag46. All the best to you. I hope all goes well for you.

[Otterfield]

It's such a tough one and I'm afraid I can't be much help as I am agonising over this too, though I am at an earlier stage, having been diagnosed last year. I had a telephone appointment with Prof Harrison and I felt that she was definitely nudging me in that direction, but she didn't hold back on the risks either. I am well at the moment and afraid of rocking the boat but if I wait until I'm not so well...Sorry not to be helpful but I can offer fellow feeling.

[Bullace in reply to Otterfield]

Thanks Otterfield - for the fellow feeling. I do wish you well with your decision.

[Murry33]

Hello I am Post ET/MF or should I say I was. My diagnosis changed from ET to MF in 2016 and was told to live like I don’t have it. As a time I was on hydroxyurea . In 2018, My platelets became high so I was on a small dose of chemo for six months just to keep them under control. I was also on RUX. I had a transplant in spring of 2019. My health was up and down after the transplant I was very fatigued and it seem like each new appointment would be different. After 10 months of this struggle, my graft failed. I had turned 58 and I initially had decided that I didn’t want to be tied down to treatment and wanted to have the transplant while I was relatively young and healthy. I was not sure if I wanted to go through it again and as I was deciding I became transfusion dependent needing blood and or platelets every single day. My doctor was not sure if a second transplant would be successful but felt I should try.

I had my second transplant on April 16, 2020. It was an immediate success!!! I only needed one product since then and I am currently in remission and 100% donor. I returned to work in December and I actually just switched to appointments every two months. It is such a difficult decision for all of us because we each have different levels of disease and symptoms. For many years I felt like I was in treatment for something that I would’ve never known I had if they hadn’t told me. It was difficult as a woman losing my hair not once, but twice and it definitely wasn’t fun feeling weak and dependent on others. I definitely did not feel I would be here today prior to my second transplant. My true belief is that God wasn’t ready for me and my goal in life is to pay it forward by trying to help others in anyway I can.

Best of luck in your decision and many prayers for peace in whatever you decide.

Mary

PS I am in the US and my treatment was all at Moffitt Cancer Center in Tampa Florida… I cannot say enough about this wonderful hospital and the people who work there! Also I owe my life to Be the Match!

[Bullace in reply to Murry33]

Thank you so much for sharing your experience Mary - both negative and positive. The idea of being ill all the time and dependant resonated with me. I would hate it. I am so glad that the second transplant worked so well for you and hope you continue to be safe and well.

[Cja1956 in reply to Murry33]

That is an amazing story! I’ve never heard of someone having two transplants And it’s encouraging to hear such a great success story. I’m very happy for you and it’s a a great inspiration. Thanks for sharing.

[StreetPastor in reply to Murry33]

Thanks Mary for sharing x

[Cja1956]

I know exactly how you feel. I am in the same boat, pretty much. I was diagnosed with post ET MF intermediate 1, in September of 2019. My hematologist told me I would probably need a transplant within the next 2 to 5 years which is coming up. However, my numbers have been stable for about a year and a half and she doesn’t think I’m ready yet. But after my diagnosis in 2019, she sent me to a transplant specialist for a consultation and he wanted me to get a biopsy every year just to check my progress. I am 65 now and I’m feeling pretty good at the moment. On my last visit with my hematologist, I asked her if I should have another biopsy and she said if I want one she’ll schedule it but she doesn’t think I need it yet. My sister is also not a match so I’m on a donor list. I understand you’re being scared because I feel the same way. Do I just go along with the medications I’m taking and hope for the best or put myself through the grueling process of a transplant? It’s an extremely difficult decision but only you can make it. I wish all the best.

[Kerri2]

In October I learned my ET had transformed to high risk MDS and was rapidly heading to AML. I opted for BMT and had my transplant in January, I was 66. Reduced intensity conditioning, my brother, 64 and in excellent health, was a perfect match. I have am doing extremely well so far.. Will be 6mos in July, 1% remaining host cells, no mutations, no signs of GVHD or other cancers.

I was mainly concerned that if I waited I would be deemed to be too old. I think the most important things are your health status and donor match. Transplant centers here will also take older related donors.

[Bullace in reply to Kerri2]

Hello Kerri2 thank you so much for sharing your experience. I don't have a related donor (only child) but I believe I have a common tissue type. It is enormously helpful to read your story. Thank you.

[Kerri2]

I have a friend who is transplant nurse in CA, she said they were getting a lot of German donors, also two people on my transplant ward said their donors were German (males). I understand the German government is offering incentives to their citizens to donate. I wish we were doing this in the US, maybe we could offer student loan forgiveness. My doctor said men were better donors and I think they don't like to use female donors with men. I have 2 sisters who are matches to each other and my brother and I, I was just so happy we weren't all flagged as geriatric. Good luck! Please keep us informed.

[pj1963]

What a very hard decision for you to make, as everyone has said. I am 58, post-ET MF, diagnosed with MF just over 4 years ago and have been on Rux since then. I remember my consultant telling me two years ago that I was too old for an SCT (!), and yet another consultant at the same hospital (Forth Valley, Central Scotland) said I would probably need one some day. So the big SCT question is always at the back of my mind. Can I ask where do you see your consultant?

I don't know how you can decide what to do. I simply send you my best wishes for you at what must be an agonising time. I think however it sounds promising that your consultant has suggested one at all.

I'm also interested that SCT is performed in patients in their late 60s in the US , and wonder why we don't do that regularly here? Does anyone know?

Paula

[Cja1956 in reply to pj1963]

Hi, Paula, I’m in the US, and the transplant specialist i consulted said he does them up to age 70. Some hospitals in the US go as high as 75.

[pj1963 in reply to Cja1956]

Yes, and I'm curious to understand why they perform SCT in patients in their early 70s in the US, when it wouldn't be considered at all here in the UK. Presumably the same protocols are followed?

[MFBMT2011]

HiI am now sixty eight and had my transplant 10 years ago in London. My initial haematologist said SCT was unproven, The internet said top age for SCT was 45. My second opinion with Proff Harrison helped me on the way to SCT, which was where I wanted to go. My story from diagnosis to three months post is online in various places (Chris Harper bmt or SCT) or I can share directly if it helps. Some points to consider.

Advice comes better from MF or SCT specialists than general haematologists who cover a broad range.

It is worth initial investigation as not everyone can be considered. General health and fitness are probably a better measure for SCT than just age.

Part of the initial process is a check on major organs to ensure they can deal with the rigours of SCT; a cousin of mine aged 70 who has ALL, was turned down because of heart and kidneys not being up to it. (I also met a lady on the USA who at 74 was six years out from her SCT.)

A match has to be found. Siblings are good but sometimes young, vigorous cells are just as good; mine came from a fortyish lady named Sarah. I have friends in various parts of the world, USA NZ OZ, who have German cells. This just proves we are all a bunch of mongrels!

Leaving SCT as a last minute rescue package increases the risk.

SCT is a tough ride and risky with the potential of success with better health and longer life. Graft Versus Host Disease(GVHD) can be virtually zero or challenging afterwards. Doing nothing has an ultimate outcome.

In you place I would progress finding out more about the potential as there might be issues warning against it or you might not find a match, both of which would make the decision for you. However, if all good, make a definite decision rather than leave it. Me, I did it.

Happy to chat if it helps.

Chris (Princess Leia version courtesy of Sarah, my donor)

[jillydabrat]

Hi my lovely, try messaging Chris (Jedi warrior) as he recently had the transplant and I am sure he would answer any questions and is always willing to help. Best wishes and God be with you in your decision xx

[StreetPastor]

May I ask, has anyone done a study on you at Guys and St Thomas Hospital London due to the longevity of the MF?

My understanding WAS that it shortens ones life. 30 years is amazing!

[Bullace in reply to StreetPastor]

Yes I have been seen at Guy's. Still am loosely attached. I was diagnosed quite early when I had no symptoms by a really excellent GP.