My father has recently been diagnosed with Chronic myelomonocytic leukaemia (CMML). He is at the lowest end but suffers with chronic itching. He’s 70 and has been offered a stem cell transplant but with so little information available and has been told he has a 20% chance of death in the first 12 months of the transplant is at odds as to what to do.
Does anyone have any experience of a transplant? Any information gladly received. Also any advice or tips for the itching?
Thank you so much.
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Hi @Joanne145 thanks for posting and joining our forum which I expect is the last thing you expected to do.
When I was a daughter in a similar situation I can remember feeling very powerless over what was happening.
What I will do is I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses as they have more expertise in transplants and itching.
However I also hope others on here will share their experiences.
@Joanne145 Please do look after yourself as well as you obviously look after your father and please do keep posting
Thank you for your response Erica
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Hi Joanne, I had a stem cell transplant last year. I’m just over a year past with it. Im in my 40s and it was for myeloma so the conditions and circumstances a bit different but they are for everyone. They told me there was a 5 percent risk of death with the procedure and a lot of different scary statistics beyond, but that’s all they are, statistics. They have to give all the scenarios and they usually scare you off. The way i saw it was it was going to potentially increase my lifespan and life quality so i had to do it. They wouldn’t offer a stem cell transplant to people who are older normally unless they think they are fit fot it. I dont know if this helps you any, try not to be scared of all the percentages thrown at you, Trust in the team that they will guide your dad to the right decision. x
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Thank you for your helpful info and best wishes with your recovery.
Joanne
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I have to decide about a Stem Cell transplant sometime soon.I have advanced Mycosis Fungoides which is a pretty rare T Cell Lymphoma and they say that without it I have roughly a 50/50 chance of living 5 years but I have to balance it with the mortality rate of the actual Stem Cell transplant itself.I don’t think that I have to decide until the chemotherapy brings the T Cell Lymphoma under control which so far , after the second infusion it hasn’t.A lot to think about.
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Hello, thanks for sharing. It certainly is a lot to think about. Best wishes
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Hello @Joanne145
Welcome to the Forum. Thank you for posting your question and sharing the situation.
Do you mind me asking if your father has spoken with the Transplant team or was it his Haematologist? Usually it is best to go and speak with the transplant team first, before making a firm decision. They will be able to better assess and discuss his individual circumstances. Usually there is a discussion with a transplant nurse too, for any questions after seeing the Consultant. By seeing this team does not commit your father into having the transplant at all.
With regards to his itching, so sorry to hear that he is suffering with this, does his team know how badly this is affecting him? They might be able to start him on some medications, possibly anti-histamines, steroids, prescribed creams etc,.
Cool baths and showers can be helpful for some people. Sometimes people can benefit from having phototherapy (UV light therapy) - this needs to be discussed with his Haematology team though. There are quite a few threads on this Forum about itching, so do type it into the search bar at the top of tips and advice in other threads.
Please know that you can always call our supportline: 0808 2080 888 to chat anything through, either yourself or your father.
Best wishes to you both, Heidi.
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