Help deciding about Transplant

[Cazbolac]

I was diagnosed with Primary MF aged 49, 6 years ago. I am well managed on Ruxolitinib 30 mg daily, Aspirin and Acyclovir. My consuhas recently referred me to a transplant construct discuss a possible transplant. I am trying make my decision, which I am finding so difficult. As I am well controlled, I wonder if I should live my life as full as possible now with my husband or should I go for a transplant now? It means putting my life on hold while treatment is undertaken. Can anyone, who has had a transplant, or is considering one too, perhaps offer some thoughts.

[crapaud]

Firstly - my opinion is ´what is your gut feeling?’Let’s be honest a SCT is a challenge so if you decide to do it you have to invest yourself and have a ´winner’ attitude.

I underwent a SCT 5 yrs ago and don’t regret it - it wasn’t easy and family support was important.

Perhaps it was an easier decision for me, I was basically told ´your only real chance is an SCT’ - I had MF/MDs-U.

There are other people on this site who went down the Ruxolitinib road before having a transplant.

Their opinions may be helpful.

Whatever you decide, do it wholeheartedly.

Best of luck

Gary (crapaud)

[Cazbolac in reply to crapaud]

I am so grateful for your reply.

[Cja1956]

Interestingly enough, I was having the same discussion last night with 2 fellow mpners. I have post Et MF and last year my hematologist told me I would need an SCT within 2-5 years. Have you already seen the SCT specialist? I was referred to one, as well, and put on a donor list. But I also learned a lot of valuable information from him.The difference between us is you are younger than me. I’ll be 65 in a couple of months and I would think it’s more risky at a my age. My kids are grown and doing great. It’s a grueling process, but if I were younger and this was the only cure, I think I would be more to likely to go ahead with it. You can always get a second opinion from an mpn specialist.

It’s a very difficult decision and I wish you well.

[Cazbolac in reply to Cja1956]

I am just about to have my third discussion with the STC consultant. First told me about process second about risks and complications and next for me to ask questions. Just feel so uncertain.

[Cja1956 in reply to Cazbolac]

I understand exactly how you feel. At least you’re getting all the facts. But if you’re young and healthy, and your doctor thinks it’s time, then I would go for it. But that’s a decision you alone have to make. Because it’s a tough process. Let me know how it goes after your next appointment. Write your questions down before you go and bring someone with you just in case you forget something. My partner went with me and recorded my appointment on his phone. Best wishes,

Cindy

[Cazbolac in reply to Cja1956]

Thank you

[Otterfield]

I'm afraid I can't offer any advice because I also have MF (post ET, only diagnosed in August). My consultant has mentioned SCT but the prospect scares me. On the other hand, if it became the only option I would go ahead. It would have to be a donor through an agency as my only sibling has had chemotherapy, which makes her unsuitable. To be honest, I'm very scared of being faced with that decision and getting it wrong. Ruxolitinib is doing wonders for me but of course it's very early days. Sorry for such an unhelpful response but I can at least offer empathy! Best wishes, Jennie

[Cazbolac in reply to Otterfield]

Thank you. Yes it is a scary thing to have to make such a decision. I keep putting down the fors and against but I still feel confused. Keep well and safe.

[Paul123456]

Have you had a full myeloid panel mutation test? Might help with timing a SCT.

Also, for those intending to have a STC but just wondering when, I’ve read that Ruxo can result in some patients delaying for too long because they feel so good.

It’s an agonising decision to have to make and I really feel for you. Good luck with your consultation, hopefully this will help you to properly evaluate your options

[Dodders]

I underwent SCT 18 months ago. I had reached a point with my treatment that meant an SCT was the only option that held the prospect of giving me back my life. Ruxolotinib had not worked, a trial on Pacritinib did not work, my spleen was very large, I had gastric varices and was not feeling well with sweats and fatigue. I had become dependent on weekly blood and platelet transfusions. The decision was therefore akin to Hobson's choice, and so all I had to do was to persuade the consultant to book me in for the procedure. Knowing the consultant was in two minds given my underlying comorbidities I wrote to him outlining my thoughts and explained that if the decision was solely mine to take then I would opt to go ahead. I was duly booked in for the transplant a few weeks later. I do have my life back although it was a close run thing for a while this time last year. It seems to me that, ultimately, it is a choice you have to make in conjunction with your consultant. If you are managing well on Rux and quality of life is ok then maybe there is no need for you to take the risk? MF appears to worsen at different rates for different patients; for me the MF worsened rapidly. Before I wrote to my consultant he had referred me to Dr Claire Harrison such was his uncertainty over whether I should have a transplant. Seeing someone like Dr Harrison might be a good option for you if the decision is, as it were, on a knife edge for you. I wish you all the best and hope the eventual outcome for you is as you wish for.

[Cazbolac in reply to Dodders]

Thank you so much for your reply. Best wishes.

[JediReject in reply to Dodders]

Glad youve come out the other end Dodders and got your life back. It's a good feeling to be free of MF. . Agree with all you say . Like you my decision was largely made for me but if one is doing quite well on the drug route it's hard to determine the timing of opting for Transplant especially if you need a matched unrelated donor.

A point I've made many times is that the drugs aim to manage ones symptoms which can make you feel better than you are but don't really impact the underlying MF which marches on. That was partly the case with me but I could tell I was weakening and it was time to act.

Regards - Chris

[Wyebird]

I’m Et so I have no idea what you are going through. All I’m doing is sending you hugs.

[EleanorPV]

I have met people who have decided on a SCT and some have decided not to go down that route. Every decision is a personal one. Something which may help is to ask MPN voice to speak to a buddy. I hope you find the information you need to make your decision. Good luck with whatever you decide.

[Cazbolac in reply to EleanorPV]

Thank you for taking the time to reply. Much appreciated.

[Bullace]

Just wanted to wish you all the best with this difficult decision. My MF disease progression has been slow - I've been lucky and it is well managed with 25mg rux daily. I've had MF for around 30 years and my quality of life has been good. Having said that, I've had two spells in hospital recently and my spleen is very large. I was diagnosed when I was 39 but at that time transplant was so risky that I was advised not to go for it. I believe all that has changed now and it is definitely worth considering because it is a potential cure. Good luck with your decision.

[Cazbolac in reply to Bullace]

Really appreciate your reply. I wonder if you would mind telling me a little about how you have managed over the years with your MF as you were so young when first diagnosed. How are you now for example.

[Bullace in reply to Cazbolac]

I had no symptoms apart from the enlarged spleen for many years and only began having treatment - hydroxycarbamide and then radiotherapy about 15 years ago. Every time they managed to shrink my spleen, I became very anaemic and needed transfusions, which I hadn't needed before. The breakthrough for me has come with ruxolitinib, which I've been on now for about 7 years. It's enabled me to live normally and enjoy walking and my grandchildren. However, I'm not sure I could do the walking I used to now. Rux still seems to be working, fingers crossed, but like I said, I had a couple of stays in hospital in October for different and apparently non related conditions but who knows really whether they are related or not? It's taken me 6 weeks to feel properly well again. It's quite difficult though to disentangle the MF symptoms from the symptoms of aging now I'm 67!

[Cazbolac in reply to Bullace]

You taking the time to reply to me is very much appreciated. I feel I am well maintained on Rux so my decision is not an easy one. I will get as much information as I can, have tests to see how my MF is progressing and then try to make my decision. Thank you again.

[Bullace in reply to Cazbolac]

You're more than welcome. I do wish you well.

[Pte82]

When you have your discussion raise the role of thiamine deficiency in transplants and again remember thiamine requires magnesium to become bioactive. Request the text for this link:

Thiamine Deficiency in Stem Cell Transplant Patients: A Case Series With an Accompanying Review of the Literature

[Cazbolac in reply to Pte82]

Thank you.

[MFBMT2011]

I had your decision to make in 2010 aged 58. Rux’ did not exist (was still in trials) but I am not sure it would have changed my mind. I was IR2 and given a prognosis of 2-8 years survival with a median of 5 years. Told I would have to have SCT within three years, I chose to go ahead immediately. It is a difficult decision as it is not guaranteed to work, however, Myelofibrosis can not be cured in any other way and marches on often disguised by Rux helping to manage the symptoms. Some use SCT as a last minute thing when they are too ill to deal with it. It is important to be be reasonably healthy going in as it really puts your body through it. Part of the medical preparation is checking various functions to ensure SCT is even possible and of course finding a good match. Discuss with your consultant and meet the SCT team to get their view on potential and success. It might help you make your decision. Happy to share my transplant story if it might help your thoughts.

Best wishes

The other Chris (with the Princess Leia stem cells)

[Cazbolac in reply to MFBMT2011]

Thank you so much. Would you feel able to tell me some of the things you suffered during the process. I am so scared about the actual process, complications and the way you feel during it all.

[MFBMT2011]

We are all different and it gets us in different ways. Some sail it others have a tough time. For me it was just the middle four:five days when I had conditioning with ATG Thymoglobulin (Rabbit). Here is what I wrote about in 2011:

Six days of intravenous chemo, then three of ATG conditioning. It seemed easy until day 7 at 1715 when my body was bushwacked and I went into a twilight zone of headaches, sore throats, diarrhea, hourly loo trips, shivering and many other unpleasant reactions, with very little sleep, for the next 3 days. Things started to settle on the day I got my new stem cells and then I had two more twilight days before starting to improve. Whilst I found these days very difficult I simply remembered what the doctors had said “You are going to feel more ill than you have ever done before” . They were right! Some days I ate, others I didn’t because I couldn’t swallow (ice lollies (popsicles) were great for my throat). Now began cell watch as we watched them drop so that I became neutropenic and then rise. The counts for HGB, Platelets, Neutrofils and White Blood Cells, would help determine my release date, alongside my general health.

It is tough but it is worth it!!

[Cazbolac in reply to MFBMT2011]

You sound a brave person. I hope I am brave enough to make a decision. Thank you so much.

[MFBMT2011]

Not brave, just practical. My Myelofibrosis was moving fast as 18 months before diagnosis in 2010 I had normal Blood counts. Knowing it would need to be done I just chose to go ahead before it got worse. My HGB was in the 8’s and close to requiring supporting transfusions which can be a negative factor. Listen to the experts and they will help you make the right decision. Best wishes. Chris