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Pre transplant


My fiancé is due to have stem cell transplant ( unrelated donor) in August. He was diagnosed with ALL in January ( Philadelphia positive). He was consented to go on ukALL trial to have three months chemo but due to high risk of relapse he was advised transplant would be only option of cure. I wanted to know if anyone diagnosed with ALL has been Philadelphia positive also as this seems to be something we have thought a lot about as it has been told to us that he is at higher risk of relapse? He went in remission after the first round of chemo which was positive.
He has been well during chemo treatments (I.e minimal side effects). He has unfortunately had a line infection twice now and so has to have this out pre transplant and have a new one out in which he was annoyed about.

He is focused on getting the transplant done and getting back to a normal life afterwards. We have had to postpone our wedding as we were due to get married in August. We did put it back to the end of October but this has now been suggested as still too soon after transplant as he will only be 89 days post transplant. So we are now thinking of postponing until next year.

We would like to have some tips or advice about what to expect with transplant and also any tips on how to manage side effects?



  • Hi Leah,

    Your fiance's situation sounds very similar to mine. I also had ALL but I can't remember whether it was Philadelphia positive (I don't think it was). I went through the UKALL14 trial and also had 3 months of progressively more intensive chemo followed by a stem cell transplant. The first month of chemo was plain sailing and I actually felt better during that than I had for months before (which could have been due to the steroids). The second and third months treatment were tougher though and at the end of the three months I felt quite ill and not really ready for the transplant.

    It seemed quite easy to get me into remission and I was in the clear by the end of the first months chemo, but I was also at a high risk of the Leukaemia coming back so the target was always going to be a stem cell transplant, which I had at the start of the 4th month of treatment.

    The problems with the lines are fairly normal I think and I had two PICC lines during my chemo before having a Hickman line installed just before my transplant. Whilst it is probably frustrating for him to have them changed they do make life a lot easier as my veins had all but vanished after the number of cannulas I'd had stuck in my hands.

    The thing to bear in mind is that everyone is different and reacts to the transplant differently, so it's difficult to predict how your fiance will feel after the transplant or how long it will take him to recover. Some recover quickly and others take some time to get back to normal. For me my recovery was prolonged by GvHD but not everyone is affected by that and I think the developments in screening donors even since my transplant 3 years ago might be working towards reducing the occurrence of GvHD.

    Having your wedding as a goal is a really good thing for your fiance to set his sights on and will help his recovery if he has a target to focus on. I set myself a target to climb Snowdon 3 months after my transplant but I was nowhere near ready. I postponed that but I finally completed the climb a year after my diagnosis (which was 9 months after my transplant) though it was still very tough and when I look back at the photos I wasn't my normal self. It was the proudest day of my life though and very emotional when I reached the top. Your wedding will be just the same too and I'm sure it will be your fiance's way of celebrating that 'he's back'.

    When you have a transplant everyone talks about the 100 day milestone and subconsciously I think we expect everything to be back to normal by then, though the reality is there is still quite a way to go after that. I guess that only you can decide whether to postpone your wedding, or to go through with it and make the most of the day regardless.

    You should both take heart from the success stories you will hear on here, as there are growing numbers on the forum who have had successful transplants and are enjoying life. He will get through it and he will get better, and there's no better way of having your wedding to celebrate at the end.

    Please let us know how he gets on.

    All the best,

  • Thank you Steve, he has had his line out today and is ready to come home before going back in for transplant.
    We are feeling positive about things and especially as I have been reading many positive stories on the forum, this does help. I will keep you updated about his progress.

  • Hi Leah

    My name is Hayley and I am the nurse specialist in the Anthony Nolan patient experience team, thanks for posting on the forum, I am sure you will get lots of support and advice from the community.

    Its good news that your fiancé has responded so well to the treatment and he has coped so well with it too, as annoying as having a line removed is infection is one of the risks and you have to be quite lucky to keep a line in for all the induction chemotherapy and transplant. You are right that having the Philadelphia chromosome puts him at a higher risk of relapse. When patients are diagnosed with Leukaemia we look at the cytogenetics, history and research has shown us that if certain cytogenetics are present then the risk of relapse is higher and unfortunately the Philadelphia chromosome is one of those. However its important to remember that he has responded well to treatment with little side effects so he will be strong going in to the transplant.

    I think patients like Steve give the best advice about what to expect and tips on side effects having gone through it themselves. Anthony Nolan has recently published a podcast specifically about pre transplant preparation so maybe have a listen https://audioboom.com/boos/4694056-preparing-for-a-bone-marrow-or-stem-cell-transplant The feedback from this has been very positive so I hope you will find it useful. We also recommend a book called The Seven steps which is a great resource and The Next Seven Steps which focuses more on recovery. We also have the Little Guide to Transplants and life after transplant booklets which are great, all of these can be downloaded or ordered from https://www.anthonynolan.org/patients-and-families/resources-and-information/download-or-order-information

    In terms of recovery, Steve is right, its good to have a goal and there is no better goal than your wedding day. The focus does tend to be on D100 and to be honest this is very misleading and I would not focus too much on this at all. We generally advise that it can take 6 months to 1 year to recover but it will vary from patient to patient. Some of the factors that will affect this are things like, how easy it is to reduce the immunosuppression, if he gets acute or chronic GvHD, how well do the stem cells engraft, how fatigued he will be from the treatment and if has any infections along the way. All of these are expected side effects so don't worry if he does experience them but what will matter is if one of them is a bit persistent and takes a bit longer to get over. Postponing your wedding until next year is a wise move and for your fiancé to be well enough by next year is a realistic goal but you will need to be aware that some flexibility might be needed and really its only once he has had the transplant and the first few months go by you will be able to gauge how he is doing.

    It might all sound a bit daunting and uncertain but take it a step at a time, he has done well so far and there is no reason why he cannot continue that, he clearly has amazing support from you. There are lots of people who have had transplants, got through the recovery and gone on to get married, climb mountains and live a normal life.

    Keep us informed of his progress.

    Best wishes
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