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Me again

After some advice. my husband relapsed after 16.5 yrs post stem cell transplant for AML. The doctors aren’t sure if it’s the original AML or secondary. Can secondary AML be cured with another stem cell transplant? As the doctor has worded the letter with “ if he gets remission there will be an option of a stem cell transplant” am I being naive in thinking he’ll get remission and have another stem cell and be okay again? He is 50 yrs

Comments

  • Hi Beaglegirl,

    I don't know what the statistics are for the success of treatment and transplants for a relapse so late after a first transplant, but statitistics probably do exist. Having said that I try not to take any notice of statistics as everyone is unique.

    I guess the phrase in the letter is no different to what the doctor would say to anyone going through a first transplant where the aim is to get the patient into remission and cure the cancer, then follow that up with a transplant to reduce the risk of the cancer returning.

    To me as a layman rather than a medical professional I would think he has as good a chance of getting through a second transplant as he did his first. As per other posts there are several people that have had successful second transplants and to me, the time difference shouldn't be a factor.

    At 50 years old he is marginally older than I was when I had my transplant (I was 46) so hopefully he is otherwise fit and well enough to go through more treatment and a second transplant. I know it will feel daunting when he knows what to expect, but I hope he has the determination to go through with it and get better again.

    Best wishes,

    Steve

  • Hi Beaglegirl,
    I'm Rachel- Lead Nurse at Anthony Nolan. I'm really sorry to hear of your husbands recent diagnosis, I'm sure its been difficult to come to terms with, for you both.

    Unfortunately a secondary cancer developing after stem cell transplant isn't uncommon and whilst treatment received previously (for the original cancer) may have some bearing on the treatment selected now, it is not unrealistic to consider the possibility of a remission. Assuming your husband is otherwise fit and well the medical team may consider a 2nd transplant as a part of his treatment plan to keep him in remission. In doing this they will talk about the risk v's benefit of undergoing this 2nd transplant, taking into consideration his pre-treatment, age and general fitness now.

    I hope this has helped answer your question. Please do get in touch on our patient and families helpline if you'd like to talk to someone further 0303 303 0303 or email us at: patientinfo@anthonynolan.org.

    Best wishes,
    Rachel

    Dieseldrinker62
  • edited May 6

    Hi Rachel,

    We have spoken with the doctors yesterday and he starts his chemo this morning. It looks like it is not his original bone marrow coming back but his donor cells that have the AML. He will be having Daunorubicin-and-Ara-C-Cytarabin to try and get remission then more before hopefully finding a second donor. He is not feeling positive at all and keeps saying he's not coming home which is heartbreaking for me and I cannot get hm to talk to anyone. They have also said that he might go blind due to the treatment is this rare or possibility?The hospital staff are so under staffed and its so hard to get anyone to question things. Im sorry if this is not the place to be asking questions but I don't know what else to do? The other worry is that they cannot find his original tissue match as it was so long ago and Im petrified that they won't find a donor.

    Dieseldrinker62
  • Dear Beaglegirl,
    It's no problem to post your questions here, getting first hand experience from other patients can be incredibly useful in answering your questions but you may also wish to call our helpline: 0303 303 0303. I and other members of our patient services team man the phone lines 9am-5pm, Monday- Friday- you might find it useful to speak to one of us for support, if your questions are about treatment and side effects then ask to speak to Rachel- Lead Nurse and if I'm not immediately available, I'll be able to call you back.

    We offer a great support service called TESS (telephone emotional support service) which your husband (and/or you) may wish to access to help talk through the emotions, coming to terms with the new diagnosis and the prospect of further treatment- information about this service can be found under the 'get support from us' heading on the website.

    I note a particular question you had was around the Daunorubicin and Cytarabine (ARA-C) chemotherapy. This combination is often referred to as DA. Cytarabine, when given in high doses, can cause side effects of sore/itchy eyes (conjunctivitis) to manage this patients are often given steroid eye drops throughout the chemotherapy cycle. This isn't always the case and will depend on the dose of Cytarabine, but I assume this is what the medical team are referring to with regards the treatment risk. If this is the case then blindness is a very rare occurrence and steroid drops are very effective at reducing any uncomfortable side effects from the Cytarabine. I have put a URL to some Macmillan information about Cytarabine below, for you to look at:

    https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/cytarabine

    I hope that's of some help to you? Please don't hesitate to get in touch on the number above if you'd like to talk to us.
    I hope the treatment goes smoothly for your husband over the next few days.
    Best wishes
    Rachel

    Dieseldrinker62Claire_AnthonyNolan
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