Hi!! I have Myelodysplastic syndrome, with treatment of azacitidine, I´m schedule to receive a bone marrow transplant in april, I have to be aisolated for a month and the doctors told me that the chemo I´ll receive for that will be stronger, I just want to know what should I prepare for, because with my current treatment I dont have the usual side effects from chemo but that is because is a rather “noble” (that is what the doctors tell me) chemo, so, if you or anyone you know went through the process I will apreciate all the advices and notes.
Thanks!
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Hi @ParMaro I hope others will share their experiences for you.
However perhaps have a talk to your specialist nurse or medical team as they know your hospital, it’s facilities and are used to having patients for similar procedures.
I hope your bone marrow transplant goes smoothly, please do keep posting when you feel like it.
Be ever so kind to and look after yourself.
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Hi @erica, I’m talking to my doctors but they are not exactly forthcoming so I’m seeking advice and experience from people who’ve gone through the process.
Thanks!
El El mar, 18 mar. 2025 a la(s) 1:20 p. m., Erica via Blood Cancer UK Online Community Forum <notifications@bloodwise.discoursemail.com> escribió:
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Not me personally but my husband had a bone marrow transplant in June to treat Acute myeloid leukaemia (AML). He was in hospital for about 5 weeks overall - 7 days before hand for his chemo & then 19 days post transplant.
Happy to answer any questions. He’s 9 months post transplant now so still early days but to look at him now, you wouldn’t know he had Acute myeloid leukaemia (AML) or a transplant really.
There was a lot of medication to take home and I would say for the first 100 days, but especially the first 60 days, his energy levels were low and we kept activities to the bare minimum. He had a small list of safe foods that he could tolerate and he basically ate a lot of scrambled egg & tomatoes.
Once he was discharged, we did two weeks of going back to the unit twice a week plus one consultant visit. The unit visits checked his bloods. For him, he had to have 2 magnesium transfusions and one platelet post release but I know some people don’t have any and some are transfusion dependent for months. There is no right or wrong and no rule book so I think just setting yourself up with no expectations would be helpful.
If you have questions that he can help with, post them & I will get answers for you.
He is delighted to have had the transplant. No regrets at all xxx
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Chemo wise there are a range of variations of conditioning chemo before transplant so people can get different versions. For my husband he felt nauseous, and was perhaps sick on one occasion. Post chemo, he had mucositis so painful mouth and throat. The hospital were very good at supporting with different foods, drinks, medication etc.
He probably felt worst between day 7-14 post transplant when he had no neutrophils and was waiting for the transplant to take.
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Hi @ParMaro and thanks to @Toadmum for sharing husband’s experience. I know from having supported many people who have undergone a stem cell transplant that the whole experience and final outcomes can be hugely variable and very individual. Anthony Nolan have produced 2 books -one is preparing for a stem cell transplant, the other is what sort of experiences you might have post transplant. One is called The Seven Steps and the other is called Seven Steps -the next steps. Reading both might prepare you mentally and practically for going through the process.
I wish you well and hope for a successful outcome.
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