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I’ve already posted here before but just to recap My husband has relapsed with AML after 16.5 post bmt. However the consultant has said that his DNA has given the donor cells leukaemia? Apparently it’s the rarest thing they’ve seen. I’m praying some can shed some light as I’m so confused and I can’t get to speak to his consultant. Someone on a Facebook chat group has suggested it might be called DDL donor derived leukaemia. I’m feeling absolutely sick with worry.
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Hi Beaglegirl, I'm sorry to hear your news.
I can't help you with any advice regarding the source of the Leukaemia unfortunately and I'd be nervous about taking diagnosis suggestions from Facebook or Google, hence why I wouldn't try and suggest how it has arisen myself. For me, the best source of information would be your husbands medical team, and if necessary the Anthony Nolan team who you can contact directly. It does sound like you need to speak to his consultant and I'm surprised you are having difficulty being able to do that.
The main point now I guess is what the plan of action is to treat the new Leukaemia and to get him back into remission and hopefully eventually cured. Those are the questions that you need answering by your husbands medical team.
I can understand how distressing it must be for you and would ask that you make sure you get some support yourself. It can be as hard for you watching your husband go through this and the uncertaintly of what will happen to him as it can be for your husband himself. Please speak to your husbands medical team, your GP or the Anthony Nolan team and make sure you look after your own welfare as well as that of your husband.
Regards,
Steve.
Thankyou Steve sorry to post again but I’m desperate for answers so clutching at straws and know really I should t be looking on fb. I’ll try and speak to someone at AN. Thanks
Dear Beaglegirl,
I can only imagine how difficult this time must be for you.
It sounds like a further meeting or discussion with your husbands Consultant or Nurse Specialist would be beneficial to help you (and your husband) understand what is happening. If reaching the Consultant is proving difficult, could you make contact with his BMT Specialist Nurse or the Myeloid Specialist Nurse? Speaking to someone with access to his medical record and results sounds sensible as, from what you've posted, this appears to be a complicated relapse/new diagnosis.
We'd be very happy to talk to you further on our helpline in the meantime. You can call: 0303 303 0303 or email us at: patientinfo@anthonynolan.org.
Kind regards
Rachel Miller- Anthony Nolan Lead Nurse
Thankyou Rachel I’ve just emailed asking if I could call. It’s proving so difficult to speak with anyone and I can only go in to visit an hour per day. I’m feeling really worried about not knowing what is going on. My husband is being told things but he isn’t taking it all in as he’s so upset and worried.
Hi @Beaglegirl - Claire here from the Patient Services team.
I'm sorry to hear of what you and your husband are going through at the moment. I'm not sure if you've spoken to anyone on the Helpline yet, but I just wanted to let you know that you can reach a member of the Helpline team directly on 0303 303 0303 (Mon-Fri, 9-5 - excluding Bank Hols).
I hope this helps.