Chemo + Radiotherapy in preparation for stem cells transplant for AML

FormerMember
FormerMember
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Hi everyone! I got diagnosed with AML mid march and had 2 rounds of chemo (1 unsuccessful, 1 successful). Im now getting ready for a transplant. My brother is a match and they are doing the cells collection as I speak :) In preparation of my transplant, my doctor decided to give high dose chemo (2 days) and FBR Full body radiation (3 days). I know the short term and long term side effects of intensive chemo already and I was explained the added one w/ combined radiation. It makes me a bit nervous (vs 'just' a chemo) - also because I have only been talking to people who have and had AML and only did chemo before. Although I know everyone react differently, f anyone can share his/her experience with me, that would be great :) thanks a lot 

  • Hi welcome to our corner of the site.

    I was diagnosed with a rare type of skin NHL way back in 1999 and eventually had to have two Allo Stem Cell Transplants with cells from my brother.

    First was June 2014 and I had 10 days Total Lymphoid Irradiation (TLI) which is different from Total Body Irradiation TBI then some other clever treatment, but it was not as clever as we hoped as it only lasted till Christmas so went back in October 2015 for a second go with Mustard-gas strength Chemo - FluMelAlem30 Fludarabine, Melphalan and Alemtuzumab During the Melphalan I did the ice pole sucking thing 30 mins before through the 30 mins IV and 30 mins after to stop my mouth turning into one big ulcer!!!!....... and have now been in remission for over 3 1/2 years.

    My story is just that more involved but if you hit  you can see my profile and of course you can do that for other group member and you can Click to see how to add some details to your profile.

    We are open to all questions so just ask away as we will walk this with you. SCT is hard work for some but all doable with great rewards.

    I will bump a few discussions so you can have a look through them.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hello, just read your post on AML I have this with the FTLP mutation. I had 3 rounds of chemo and a week of chemo and conditioning (FBR) back in 2014. Had a bone marrow transplant in Jun 20014 and been in remission since then. Its not easy but you have come to the right place. Any type of chemo and the conditioning will definitely take it out of you and its something you live with. It doesn't take a while to settle down into the new life and the little set backs you may well experience but it is very unlikely that you will go through something that one of us on the site hasn't been through from ulcers, skin problems etc etc. I don't want to scare you but keep as fit as you can and look for some improvements everyday. I kept a diary of my feelings, worries and improvements. It helped to see improvements when you look back. Good luck keep in touch.

    Jackie

  • FormerMember
    FormerMember in reply to Thehighlander

    Thank you so much Mike for sharing your experience so thoroughly (and with humour :) ) - I will do it too! 

    Thank you for always being present and active on this group. It helps a lot. I will make sure to post my questions here... THANKS AGAIN!

  • FormerMember
    FormerMember in reply to Jackie A2

    Thank you so much Jackie. The diary is a great idea. especially with improvements and looking back. 

    All the best to you. Mathilde