Hi I am new to this site, I hope my question and comments are ok, as I feel lost at the moment.
my husband had stem cell blood transplant in June 2022. It took its toll on my husband but he was given all help to get through. It looked like all was working, but sadly on visit to hospital in November 2022 we were told transplant was failing. By December 2022 he was back having blood transfusions. My husband was 70 when he had transplant and he not suitable for another. He has also been told chemo not an option as did not help previously.
he now has to have blood transfusions every week and it’s normally 2 units. They did try giving once every 2 weeks but his blood count dropped to 46 and he ended up in hospital having more transfusions.
my husband has not really got over Transplant he is always very tired and energy levels very low.
we are waiting to see the dr to understand what if anything else can be done to help him.
my question is how long can he continue having blood transfusions. I am watching him getting weaker and the bloods not having same effect as before.
is there anything else we can ask for to help him.
thank you, apologies if I have said anything wrong. I am just so worried for my husband
Sorry to hear about your dear husband. When you say his transplant has failed do you mean that his chimerism has dropped? I’m wondering if he would be able to have DLI? As I know someone who this happened to and just over a year after received topup cells from the donor. If not I think you should ask his medical team what options are available. Please do not give up yet until you hear from them. Sending lots of love to both of you and I hope you have some positive news soon x
Thank you Beaglegirl. For you kind words and suggestion of top up from donor. We will not give up and will ask at our next appointment with Dr. So much has happened I am not sure if they spoke of this. I know he never had anything else from donor.
once again thank you x I will keep updated
HI Suedb, welcome to the forum. I'm one of the online community champions here and I am a transplant patient myself, having had an unrelated donor transplant in 2013.
I'm sorry to hear that your husbands transplant has failed and as you've probably seen from looking around the forum, transplants do unfortunately fail sometimes, or the patient can relapse. I can imagine it is a big shock and hugely disappointing to recieve this news.
As Beaglegirl has indicated there are options that can be explored to rectify the failure, including a DLI (Donor Lymphocyte Infusion) or stem cell top up, through to a second transplant, and I'm sure your husbands medical team will be considering those options and which path might give your husband the best outcome.
As you have said, you can discuss this with your husbands medical team at your next appointment and hopefully they can give you an indication of the options they are considering and confirm whether they have chosen a treatment route going forward.
I hope you get the answers you need from those discussions and please do keep us updated or ask any questions you may have here on the forum.
Best wishes to you and your husband.
Hi all update on my Husband, we see consultant last week. My husband is still currently having weekly blood transfusions keeping him going. The consultant said they are considering chemotherapy again although dr not sure if it will be any help as when my husband had chemo for 15 circles before his transplant it did not help him.
the other option dr going to find out about is clinical trial. He said he will discuss with Barts hospital and also the hospital that is doing trial as it is not in our area. Although the Dr did not say where this would be considered we said we are willing to travel.
so at the moment my husband is to continue with weekly blood transfusions until we hear from him.