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My husband is waiting for his second transplant

My husband was diagnosed with Non-Hodgkins Lymphoma May 2020. After various failed treatments and immediate relapses, he eventually got into remission November 2021 and an unrelated 9/10 donor match was found for an allogenic transplant with the cells harvested from peripheral blood. He had his transplant end of January.

Fast forward to today. He is at day +74, still in hospital. At day +5, he ended up in ICU with atrial fibriliation, subsequent heart failure and a cardiac ejection fraction of 25%. Doctors assumed myocarditis had caused this - maybe due to the conditioning chemo (BEAM) or maybe a virus. Miraculously, his heart suddenly went back to normal rhythm on day 10, but his graft, which went started working for a few days, suddenly stopped and now he has secondary graft failure, but they don't know the cause.

Just for background, his bone marrow has always struggled to recover after chemo - this time last year after his first round of R-ChOP, they didn't come back until a bone marrow biopsy showed some T-cell autoimmune response was causing inflammation - a dose of steroids later and they came back almost immediately. So his bone marrow has always been very fragile, likely due to all the chemo he has had.

His team have said he is able to have a second transplant - he will have Fludarabine and ATG and TBI as conditioning starting next week, with cells from the same donor. They said it can work, and his heart is a bit stronger now (45%), but there is a possibility it won't. The advice I need here is two-fold. Has this happened to anyone else? Can it really work? And then mentally, this is very very hard for me, I am struggling, but for him, it is horrendous. He is very poorly, very weak, having transfusions daily and can't eat (however much we encourage him) so he has to have a feeding tube. i feel like he has given up. All the hope he had has just gone and it feels like he's preparing to just fade away. Since then he's been back in ICU and on high levels of oxygen. He is in his own room so very isolating and me and the kids are trying to visit as much as possible, but I am self-employed so it's hard. I'm not really sure what I'm asking but I guess has anyone else experienced anything like this? and also is there anyone I can speak to as I feel I am going a bit crazy trying to predict the future, keep my husband going and also my kids. thanks.

BillyBobby

Comments

  • he's not still in ICU - he was in twice and is now back on the haematology ward - just wanted to be clear.

  • Not sure if I can be any help but my husband is also waiting for his second stem cell transplant. He was diagnosed with MDS into AML and struggled to get remission. He went on a clinical tria and he got remission and his stem cell transplant in 2005. We were told he relapsed over two weeks ago now and waiting for him to start treatment all over again. It’s a very frightening time for both of you but he is in the right place and I’m sure the doctors will get him through to his next stem cell transplant. I don’t have anyone to talk to other than my husband so I’m here if you need a chat x

    Claire_AnthonyNolanUnknown
  • Hi Moomee, you've really been through it by the sound of it. I hope your husband is a bit better, though it sounds like he's got a long way to go and hopefully the second transplant will work.

    There are several forum members who have had second transplants as a result of graft failure early in their recovery. It seems to happen more than you might think, so you are certainly not alone. I guess the complication in your case is sverything that your husband has been through in addition with his heart. Sometimes a transplant seems to need a bit of a jump start and that is hopefully what will happen in your husbands case. There are several threads on second transplants on the forum which may help give him and you some hope that it can work.

    It does sound like he's having a tough time though, both physically and mentally, and I hope he's getting some support for the latter in particular. It can be very easy to give up, but I'm sure he has a lot to live for and he needs to try and find a focus to drive for in his recovery. Throughout my transplant my focus was my children, and a determination to get better and see them grow up. If he can find something to concentrate on, a goal to achieve when he's better, it may help him get through. You mention that you have kids so maybe like me, they could be his reason to get better?

    He will probably need transfusions until his new transplant grafts as his bone marrow probably isn't producing many cells at the moment. I can imagine that the feeding tube is hard for him, but if he can't eat it will be helping him. I resisted having one even though I really struggled to eat and keep it down, but it was the determination to avoid a tube that helped me to eat whatever I could tolerate.

    As far as second transplants are concerned, they certainly can work and there are many here that will testify to that so I hope that gives some reassurance that your husband is not alone. I know this will all be very hard on you and your children too so please look after yourself and seek help if you need it.

    I wish your husband and you all the best for the second transplant and hope he finds a cause to get through it and pick up his recovery. Please keep us updated and let us support you as best we can through the forum, or if necessary contact the Anthony Nolan team directly for support or advice.

    Regards,

    Steve

    Claire_AnthonyNolan
  • Hi @Moomee,

    I'm Claire from the Patient Services team at Anthony Nolan. I'm so sorry to hear of the difficult time that your family are going through at the moment - I'm really pleased to see that you have found the supportive community of the Patients & Families Forum.

    I wanted to share some information with you about our Telephone Emotional Support Service, which both you and your husband might find helpful at this time. This is our free service to support stem cell transplant patients and family members, provided by ‘Working to Wellbeing’ – a team of wellbeing specialists including qualified psychologists, with years of experience in providing support for stem cell transplant patients. If you decide you would like to be referred at any point, we would be happy to do this for you - just email us at patientinfo@anthonynolan.org. You can find out more here: https://www.anthonynolan.org/patients-and-families/get-support-us/telephone-emotional-support.

    Depending on the age of your children, you also might find that The Fruit Fly Collective have some valuable resources: https://fruitflycollective.com/

    If you wish to speak to our Patient Services team at all - please feel free to call our Helpline on 0303 303 0303 (Mon-Fri, 9-5).

    I hope this helps.

    Best wishes,
    Claire

    Dieseldrinker62
  • Thank you so much for the comments. It just wasn't on my radar that graft failure was something that could happen and it's good to know there are others on this forum that have gone through this too. He went for a CT scan yesterday and will have an MRI today for his brain as he is also very confused and not really with it/ sleeping all the time. I know it can be all the medication he's on, but it is very disconcerting. The CT showed that there wasn't a bleed, which is good, but I think they need to see if there is a virus causing any problems. Again, is it this something that can happen? Thanks so much.

    Dieseldrinker62
  • @Moomee hopefully your husband's medical team / clinical nurse specialist are guiding you through the various tests, but I also wanted to let you know that Rachel - our Lead Nurse (who also sits in the Patient Services team) could be helpful for you to speak to. If this is something you would like, please do get in touch either via email or phone, and we can ask her to contact you. This would likely to be towards the end of the week - in the meantime, we are here for you on the Helpline if you'd like to talk.

    Dieseldrinker62
  • edited April 19

    Thank you Claire. I have just emailed the address you provided. Thanks so much.

    Claire_AnthonyNolan
  • My wife is also awaiting her 2nd transplant for AML in next few weeks. It is scary more so thinking of the after effects, the GVHD, the uncertainty Re relapse and success. Can only do one day at a time x

    Dieseldrinker62Claire_AnthonyNolanBeaglegirl
  • Hi BillyBobby, taking it one day at a time is the best way to handle it to be honest. Try not to think of the things that might happen and only deal with things if they come up. It's quite possible that all the things you get warned about or hear about might not happen, such as GvHD etc, as everybody's experience of transplant is different. Whilst it is useful to be aware of them, try not to dwell on them too much as you may be worrying unecessarily about something that might not happen to your wife.

    Take care,

    Steve

    Claire_AnthonyNolan
  • Thank you for your replies. The MRI came back clear for infection, and he is much less confused today which is good. I can see a little more energy in him, which is also good, as tomorrow he starts the treatment for his second transplant. It is true to concentrate on one day at time as it makes it more manageable. And thank you Dieseldrinker62, I will have a look through the forum for others who have had a second transplant. Thanks all.

  • Hi Moomee, thanks for the update. I'm glad the scan was clear and no sign of infection. Hopefully that has helped lift your husbands spirits a little and it will help him feel a bit more positive going into the second transplant.

    Take care and please keep us updated.

    Best wishes,

    Steve

    Claire_AnthonyNolan
  • Hi Moomee

    I'm Michelle one of the Online Community Champions, alongside Steve. Im also a transplant recipient and I have read though the comments and it sounds like you have been going through alot.

    I have read through the feed and I'm pleased to read your latest post about your husbands MRI results.

    I wanted to share my experience of graft failure with you. I had my transplant in 2019. My day 0 was the start of January of 2019 and I went down hill quickly. It was detected 2 weeks later than I had graft failure and required a second transplant. I received that in the May of 2019. I was incredibly unwell, I don't remember specific details about what happened but when I received the second stem cell transplant my numbers picked up gradually and I started to get back some strength.

    My recovery has been very slow but all in all positive. The journey of graft failure was heavily complicated by GvHD of the gut, mouth and eyes But with appropriate treatment we got on top of it.

    I'm glad you have been finding the forum and support helpful. Please continue to reach out when you need a space or listening ear.

    Best wishes

    Michelle

    (Online Community champion)

    Claire_AnthonyNolanUnknown
  • Thank you Michelle. I remember your story and so pleased you are in recovery. Did you have the same donor for your second transplant? Also, did you have a different conditioning regimen? My husband has started the treatment now, on day -3 and so far tolerated the drugs well. Although, I know that it takes a few days for side-effects to kick in. He spiked a high temp the night before the first chemo infusion (typical), but since then, no fevers, which is good.

    chelle_16Unknown
  • Hi Moomee

    Initially I was meant to have my transplant in October of 2018 but I wasn't well enough. My donor cells where frozen ready for when I was able to have the Stem transplant. When I went into graft failure the team reached out to the original donor but they where unable to donate, therefore we spent a large portion of my time as inpatient being cared for by the intensive care team in the hope they would find a second donor which proved quite difficult. Eventually they found someone in the May who was able to donate quite quickly. I wasn't prepared for the second transplant in the same way as my first because my immune system was so depleted any way I didnt require such intense treatment. I think I was lucky to not need a full conditioning regime.

    I have to admit graft failure left me bed bound and need intense rehabilitation just to hold my head up and I didn't eat for 5 months. As soon as the new cells took all of that changed quite rapidly.

    Best wishes

    Michelle

    Unknown
  • Yes, my husband has not eaten now for 3 months and is very poorly as he is coping with the heart failure, and being neutropenic. Did they find out why your graft failed? Thank you for your replies.

    chelle_16
  • Moomee,

    I think it was a genetic fault but I don't know the details. I was mostly unconscious the first 6 weeks. Only remembering minute details like the day I was told it had failed and that treatment would change depending on when and how they would resolve the failure. My original diagnosis had a genetic component so I think that factored into the graft faliure.

    I can empathise with the anxiety and distress regarding your husbands heart failure, I had a history of multi-organ failure and I know my kidneys and liver where close to needing transplants as well as an enlarged heart at one point. Neutropenia was a constant for me too. The hospital tried everything to lift my appetite and nutrient consumption and because I refused a NG tube they decided to replace my electrolytes which where also all over the place.

    Best wishes


    Michelle

    Unknown
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