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Low Hb

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Walshy2016 Total Reaction Points: 0
My fiancé had his total myeloablative transplant in August 2016. We were told he had a 10/10 match. It has been a slow recovery so far mainly due to infections and cmv prophylactic treatment. He is now off this and things were looking better, his platelets were stating to improve.

Last week we noticed he was needing more and more red cells for transfusion. He noticed on his blood products last week a notice saying he was DCT positive ( we googled it...direct Coombs) meaning he was breaking down his red blood cells. I spoke to his team who are doing further tests as they think he may have developed antibodies to the red cells his new marrow is trying to produce. His donor and him do not match with blood groups, is this part of the matching process normally? I'm worried as his counts keep dropping quickly meaning he gets tired quickly. His white cells and platelets are improving. He is due his next bm biopsy this week, hoping that all of that is ok.

Has anyone else developed haemolysis after transplant? If so how long did it last and how was it treated? What makes a 10/10 match?

Any advice would be welcome.

Thanks

Comments

  • greg777 Total Reaction Points: 59
    Hi Walshy,
    I'm very sorry, I haven't come across haemolysis, but I really hope your husband's doctors can get on top of it soon to get it sorted out. If it helps at all, I just wanted to let you know that my donor is not the same blood group as me - I think it is quite normal for donors not to have the same blood group and this doesn't affect the quality of the match - but I don't know the scientific detail behind it.
    Also, whilst not having the same problem as your husband (my problem was with the proliferation of histiocytes), I also wanted to let you know that I had low HB levels for a long time post-transplant. For me, it was around 8 months post-transplant when for no real reason they started to improve on their own. My doctors didn't really know why they started to improve, and just put it down to the fact that sometimes it can take a while for your body to sort things out post-transplant.
    Hoping that you manage to get things sorted out soon.
    Greg
  • beckybrambeckybram Total Reaction Points: 19
    Hi Walshy yes I had haemolysis after transplant within the first year. I ended up in hospital for a few weeks as I was making red blood cells but they where being destroyed before fully grown. I had many blood transfusions these were hard to crossmatch and due to cold antibodies needed to go through a blood heater while transfusing.
    The first treatment tried I believe was immunoglobulins to see if they would recover themselves but this did not work the next treatment I had was a four week course of rituximab and this did work for me. Rituximab is also an iv infusion I did not have any side effects from it.
    best wishes
    Becky
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 241
    Hi Walshy,

    I haven't experienced Haemolysis myself but hopefully Beckys response above helps and can give you some assurance that it can happen but importantly, that it can be treated.

    I can comment on the blood group mismatch though as my donor was a different blood group to me and my blood group changed from my own to the donors as my chimerism reached 100% donor. It hasn't affected me in any way and is not critical in the transplant process as there are more critical markers that make a 10/10 match.

    I'm sure what constitutes a 10/10 match has been covered somewhere previously so I will see if I can find the thread, though one of the Anthony Nolan team will probably give you the answer before I find it!

    I hope he's progressing otherwise and once he's over this blip he can continue with his recovery.

    All the best,

    Steve
  • Walshy2016 Total Reaction Points: 0
    Thank you both, his Hb is dropping quicker than it was over the last 6 months post transplant. He can normally stretch a week between transfusions but now they drop to low 60s even 50s after two units two days ago, He feels pretty rubbish. The team don't seem to know why it is happening still awaiting some test results, they are looking at matching his transfusions better, they said he might have got antibodies from a blood product he has had when being previously transfused which is doing this but I don't know why it would still be causing this much destruction of the red cells.

    Its all very technical and I don't understand it neither does he. I did read about immunosuppression again and plasma exchange etc. but I think until we know what's causing it its hard to tell. Will keep you up dated but thank you for the advice, glad your feeling better Becky. How long ago was your transplant? did they know why your red cells were breaking up? was it your immune system?

    thanks
  • beckybrambeckybram Total Reaction Points: 19
    Hi Walshy my transplant was november 2015 so just over a year ago. No the cause was not found but rituximab has treated it for now rituximab effects last for about 7 months by which time they hope the problem will have resolved itself. They did say if it hadn't worked they would need to take my spleen out so I think it is something to do with your spleen as to where the cells are destroyed or it was in my case.
    When I had haemolysis I too was destroying cells at a fast rate at one point they were at 40 and i needed transfusions every other day it does make you feel incredibly tired and also you get out of breath quickly, you need to take things slow and not push yourself. The main thing is that it is treatable one way or another so try and stay positive
    Best wishes
    Beckyb
  • Walshy2016 Total Reaction Points: 0
    They are thinking he may have developed antibodies either to the graft cells ( red cells graft is producing) or might be in response to some he has had transfused, depending on results they are thinking if giving immunoglobulins. Has anyone had this before?
  • beckybrambeckybram Total Reaction Points: 19
    Hi Walshy yes immunoglobulins was the first treatment they tried with me for haemolysis. It is just a transfusion like having blood, takes a a few hours but I had no side effects from it. I still have it now every four weeks but for a different reason. They give it to some people over the winter months to try and prevent colds etc.
  • greg777 Total Reaction Points: 59
    Hi Walshy,
    I have had immunoglobulins since October. The first lot I had over 4 consecutive days, now I just have it once a month to get me through winter. The first time I had it I had a reaction and spiked a very high temp. But now they give meds beforehand and I don't have any problems. I don't know for sure but getting immunoglobulins seemed to be a real turning point for me. They seemed to help me get on top of infections which I think were suppressing my counts and since then I have felt a lot better. Really hope they do the trick for your husband too.
    All the best,
    Greg
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 57
    Hi Walshy

    I am sorry that your husband is having such a difficult time. I think members of the forum have been really good at giving you their experiences and you should be reassured by this, especially by Becky.

    A 10/10 match is based on your HLA (human leucocyte antigen) tissue type. We look at 5 key sites called loci and each loci has 2 alleles. We try and match all 10 alleles, in which case it would be a 10/10 match, if we cant we then try and match at 9 alleles and this is your 9/10 match. Both are suitable to go ahead with a transplant. Blood group is not considered when looking for suitable donor, if we find a HLA match and its the same blood group then that is a bonus but it is definitely not critical. Like Steve has said in most cases they are not blood grouped matched and in time the blood group will convert to that of the donor.

    Haemolysis can occur in a small number of patients and like Becky has said treatments include immunoglobulin's and rituximab which are both well tolerated and can be given as an outpatient. In most cases this works, if it doesn't he might need to be referred to a more general haematologist who can suggest other treatment options. This will vary, I work in a oncology hospital so we do not have easy access to general medicine but if your husband is being treated in a hospital that does have these specialities on site then this will be very easy to get their opinion.

    The main message to get across is that although its all a bit daunting at the moment, haemolysis can be treated. This is probably a side effect that you never heard of and therefore didn't expect.Unfortunately like most aspects of transplant there is no quick fix and it will take time but stay positive and he will get there.

    Keep us informed of his progress

    BW
    Hayley
  • Walshy2016 Total Reaction Points: 0
    So,

    They think it is now autoimmune. He is needing lots or blood transfusions, has had second dose of Ivig this week and has just started steroids today. Fingers crossed this works. They are bit reluctant to start ritixumab due to his previous problems with cmv activation, needing ganciclovir which suppressed his marrow so much. Therfore not wanting him to back track with his treatment!

    Hoping the steroids work.
  • Walshy2016 Total Reaction Points: 0
    Update. Started steroids rate of transfusions seems to have slowed a bit. Also had ivig onec this week. They have only given two doses of this a week apart each and are not planning on giving more due to cost they said, is this normal? Also was told by one consultant ritixumab could lead to problems with cmv reactivation and then told by another that it shouldn't, this is our second option if steroids don't work and it doesn't fill us with confidence if there are conflicting opinions from our team on this. Anyone else experienced problems after having this?

    Also was told today he was Mrd negative at the local hospitals results for his 6 month bm, but the one sent for the trial ukall14 at UCL was positive but they say it's very small, they can't quantify it. What does this mean and should we be worried? Why is there a difference? Any advice?
  • beckybrambeckybram Total Reaction Points: 19
    Hi Walshy I have ivig every four weeks( to reduce infection risk) at the moment and when had hemolysis problem had a few infusions over a week, I have never heard them say anything about cost? maybe it depends on your local authority. I think though if it doesn't work after a certain number of doses it means it is unlikely it will work with ivig. I also had the rituximab once a week for four weeks I did not develop any CMV problems and I have previously had CMV earlier after transplant, like most treatments they have to warn you of every side effect going but that weighed up against the benefits is always the question.
    hope you get sorted soon best wishes
  • Walshy2016 Total Reaction Points: 0
    Thanks Becky, Did the rituximab effect your counts at all? Did you continue the IVIG while having this over the 4 weeks? Are you now on IVIG regularly to help with the aftereffects of the rituximab? It's now the second week of him being on steroids and I think the rate of haemolysis has slowed a small amount but I think he is heading for rituximab!his bilirubin has improved a little but not much.

    walshy xx
  • beckybrambeckybram Total Reaction Points: 19
    Hi Walshy rituximab worked in raising my HB back up and did not effect my other blood counts. I don't think you need ivig after or during rituximab treatment. I am having IVIG every four weeks for a different reason ( to help protect from infections) I don't believe it was because of the rituximab treatment.Once started the rituximab does take a few weeks to start working so don't be worried if you don't see a change in the heamolysis immediately. best wishes becky
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