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My brother at day 50

Hi, I’m new to the site, and hoping someone may be able to offer some advice. My brother is 50 days into his recovery. He has AML and has had a bone marrow transplant from a non family member. He has recently had the news that his leukaemia is still there and that they will have to increase his medication. Is this a frequent occurrence after the initial BMT? We are all so worried. Many thanks.

Comments

  • Hi Buffy

    Welcome to the forum. My name is Michelle, I am one of the community champions here to offer support. I am sorry to hear your brother still has disease present 50 days post transplant.

    Firstly, I can not advise regarding AML specificaly however as a transplant recipient my self I'm aware in some cases disease doesn't always get irradicated.

    The best person/s to offer specific clinical support would be our specialist Nurses who contribute to the forum too. So they will see your question and respond accordingly.

    I can only imagine your anxiety and concern for your brother.

    I was treated with an unrelated donor for lymphoma and histiocytosis and 3 months post i still had prescene of disease. At the 5 month mark i received a second stem cell transplant, is this a possibility for your brother as well as increased medication?

    Thinking of you all,

    Michelle

    Tom_AnthonyNolanDieseldrinker62
  • Hi Buffy and welcome to the forum. Like Michelle I'm a community champion here and a transplant patient myself for ALL. I'm sorry to hear that there is still some residual disease after your brothers transplant which I'm sure must be very worrying for you all.

    The treatment and transplants we go through are complex things and everybody reacts in different ways as we are all unique. After being a community champion here for a few years now I have seen others who have shown signs of the presence of their disease after transplant, so your brothers isn't alone and it does happen. His medical team will have a variety of options open to them to deal with this and the adjustment of his medication is no doubt the start of that.

    As Michelle has commented it is possible that there can be further treatment and stem cell top ups or second transplants can be given to boost the original transplant. Your brothers medical team will pursue the best option for his particular case to deal with the presence of the residual disease.

    It can be a very trying time not only for the patient but their families and loved ones around them. You must continue to make sure you support each other and look after yourselves too. It is all too easy to focus on the needs of the patient and lose sight of your own needs. Your brother will be in good hands.

    Please keep in touch and let us know how your brother gets on. We understand what you and your brother are going through and are here to support patients and families alike so we will do all we can to help you through this.

    All the best,

    Steve

    Tom_AnthonyNolanchelle_16
  • Hi Buffy,

    I'm Tom in the Patient Services team here at Anthony Nolan.

    Thank you for letting us know about your brother. I hope he is feeling OK.

    It is normal for a medical team to monitor for disease after a bone marrow transplant. This ensures that if any leukaemia is detected, it can be treated quickly.

    As Steve and Michelle have said, your brother's medical team will be able to discuss the options that are most suitable for him now. The medication or treatment that your brother receives will vary depending on how well he is, whether he has had GvHD (Graft versus Host Disease) and how much disease there is. I'm sure he'll be having that chat with his team soon, if they haven't discussed it with him already.

    In the meantime feel free to call us anytime Buffy if you'd like to discuss this further with our Lead Nurse Hayley. If you call our helpline on 0303 303 0303 we can arrange for a callback at a convenient time.

    Take care,

    Tom

    chelle_16Dieseldrinker62
  • Thank you all for your kind and thoughtful comments. It’s certainly reassuring that others have faced some tough times and come through it. I’m not sure if he has had GvHD, sometimes it can be difficult to ask as he is so unwell, but I appreciate the option to talk to someone. I will update with news as we get it, all we can do as a family is hold the line, but it’s hard not being able to help him. My heart also goes out to all those in the same situation.

    So many thanks,

    Buffy

    Dieseldrinker62Tom_AnthonyNolan
  • Hi Buffy

    Sorry for being late to the conversation, I am one of the other Online Community Champions like Steve and Michelle.

    I'm sorry to hear about your troubles in regards to your brother.

    As everyone has already said, your brothers medical team are the best people to talk to.

    Cant wait to hear how he is getting on!

    Cameron

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