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Should my husband have a stem cell transplant?

My husband (59 years old) has been recently diagnosed with myelofibrosis and has been given a life expectancy of two and a half years, much shorter than we thought. He is well and active at the moment. His symptoms are some night sweats and that he is unable to eat large meals. He was losing weight but has altered his diet and has managed to gain a few pounds. He is generally well at the moment and we are continuing life as "normal". We have seen a transplant specialist she said he should have a transplant within the next 6 months. His siblings have been tested and are not a match. He is not sure whether the transplant route is the one to take, firstly because of the risks and potential problems after and secondly as he has never been ill before and he is worried about spending a long time in hospital and then to recover. I am not sure how to support him with his choice any advice please.


Best Answers

  • Accepted Answer
    Hi Cath having a stem cell transplant is a big decision especially if your husband is feeling well at the moment, it makes it hard to comprehend being more ill to get better!, but what I have learnt from my consultants is that it is the best time to do a transplant. You need to be as well and as fit as you can be to help the transplant succeed. In my case If I waited to long then a transplant would no longer be an option, but everyone is different. There are lots of helpful people on this forum so I am sure you will find lots of support. Maybe at your next appointment make a list of all your questions I certainly asked everything I could think of before my transplant and it did help me and my family a lot. I too needed a donor match rather than a relative but anthony nolan do a wonderful job finding you the best match. best wishes Becky
  • Accepted Answer
    Dear Cath

    In 2015 I was diagnosed with Acute Myeloid Leukaemia. I under went chemo to kill off the leukaemia after which it was recommended that I under go a SCT in the hope of preventing a relapse. You have to read the literature about SCT and it is rather horrifying, that said the literature generally paints the worst picture and whilst it's not a doodle for anyone I can't think of one patient I know who regrets the decision to have a SCT.

    I have experience GvHD (Graft versus host disease) and whilst it hasn't been pleasant on the whole the symptoms have been managed very well by my medical team making the symptoms tolerable and giving me a relatively normal standard of life. The transplant itself is easy enough, the chemo regime to prepare the patient can be harsh and will mean a longer period of time in hospital but looking back I recovered quickly and a few difficult months has bought me hope of a long life and post the transplant 24 months of life.

    I imagine the 'urgency' of the transplant to ensure its carried out whilst your husband is relatively well and strong enough to endure the procedure and long term side effects. I would encourage you to speak to his consultant, I generally have found them to be extremely supportive & understanding of how daunting the prospect of a transplant is.

    As for his siblings not being donors. There is only a 25% chance with each sibling. I have a brother and sister, neither were a match for me so Anthony Nolan was contacted and there was 4 potential matches for me so please don't lose hope because his siblings weren't a match.

    I hope the above helps. We are here on the forum to support what ever decision is made.

    Wishing you the very best.

  • Accepted Answer
    Hi there Cath,

    From what I can see a stem cell transplant is one of a number of treatment options for Myelofibrosis and of those that are available it is the one that is least used to treat it, possibly because it is such a big undertaking to go through. Those here who have had a transplant, me included, will tell you it is a very long and difficult process. There may be treatment options that might be better suited, and possibly more successful without the risks associated with a transplant.

    I guess your husbands medical team will have an idea of the preferred treatments they are considering so they should be able to give you some guidance and advice. As Becky says make some notes of the questions you want to ask before you next see his team. One of those might be what treatment options have they considered and which do they think might give your husband the best prognosis.

    I think we may have members here who have posted before and have had transplants for MF so they may be able to contribute, as I'm sure the Anthony Nolan team will.

    Please let us know how you get on and stick around for us to support you through this.

    All the best,

  • Accepted Answer

    It's definitely worth looking into alternate options, another thing to consider is that the consultant wouldn't advice a SCT (in my opinion) unless they were hopeful for a positive outcome.

  • Accepted Answer
    Hi Cath,
    Just wanted to add my support to what others have said. I suppose if your husband is newly diagnosed, you are likely to be in shock, so I would encourage you to take your time and find out as much as you need to about the specific disease, treatment options, etc. In my experience, statistics are useful to give you general ideas, but they can never tell you what’s going to happen for you as an individual. Which is why I think taking your time, finding out what is the best choice for you as a couple is the route to go and then have confidence in that whatever you choose, it was the right thing for you. There will be good and bad stories out there in both the SCT and non-SCT routes, but your specialists will have the experience to advise you in terms of what they think is best, and you can then use that to help you make your decision.
    From my personal experience, I was well pre-transplant and then got very poorly for about 6 months. During that time, I massively regretted my decision. But I am nearly 2 years post transplant now, feeling better and am glad I did what I did.
    Wishing you all the best,
  • Hi Cath

    Thank you for posting, I am the nurse specialist in patient services. Having to decide if and when to have a transplant is a very difficult decision to make, especially when your husband has been so well.

    Everyone's experience is different and there are various options available but what would be most effective for him will depend on his disease and how quickly it develops. His consultant will have considered all the the options and would only recommend a transplant if he thought it was the best treatment for your husband. That does not mean you have to take that option but what you need to consider is that timing of a transplant is essential, being well is a good place to start and it also means the disease is under control. If your husband becomes fatigued and needs blood transfusions etc.his bone marrow will become weaker and more prone to infections and so maybe he will not be so fit to have a transplant. You also need to think about what the long term outcome will be with other types of treatments as well as the transplant.

    Its a lot to think about and its only natural to be unsure, give yourselves time it has not got to be decided now. When you go to clinic maybe write down some questions and don't be scared to be direct, your consultant will be honest with you both. Being well informed is essential and talking to others is always good but do remember that everyone is different and you will both know what is right for you.

    If you would like to call to chat please feel free, my number is 0207 284 8229.

    Best wishes


  • Thank you, it is difficult to make the decision to become more ill in order to get better. Best wishes to you and your family.
  • Thank you both my husband's consultant seems to be advocating the transplant route as it is a cure but I think we do need to consider what happens if he doesn't have it. The disorder is rare so it is difficult to find out what life will be like without the transplant. We must ask the questions but part of me doesn't want to know the answers.

  • Thanks Greg for your insights. I am glad you are doing well, it is good to know that you have not regretted the decision you made.

  • Thank you Hayley I think the problem we have is understanding what will happen to him if he doesn't have the transplant. So the information you have given is helpful and I must find out more when we next see the consultant which is the beginning of February.

  • We have just been to see the consultant and she has said that my husband is well at the moment and doesn't need to have the transplant yet. He will continue to be monitored and hopefully he should have a few more years before he has to have the transplant.

    Thank you for all your words of support it has been a difficult few months and your responses were really helpful.

    Best wishes to you all
  • Hi

    It is a while since I posted last but I just wanted to update you. Ron had his transplant on 9th Jan 2020. He was in hospital for 7 weeks due to slow engraftment. He is now day 134 and we have eventually seen the light at the end of the tunnel. He still gets tired but he is beginning to get his appetite back and is able to do exercise.
    Reading about the experiences of others has helped me over the past few months support Ron during some very low points.
    Thank you and best wishes to you all

  • Hi Cath,

    Thanks for posting an update and I'm really pleased to hear that Ron is doing well. Unfortunately it is a very slow process and can be very frustrating at times, but it's a case of focusing on the outcome and keep taking small steps along the way.

    It's good that he's getting his appetite back and can start to exercise as that will help him regain some strength, but it does take time. It will come eventually so keep going, onwards and upwards!

    All the best,


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