AML\Flag-Ida\SCT

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Hi, 

Garry (Gman) here, I have been on the AML forum for a few months but since I relapsed my journey will now include SCT after 2 cycles of FLAG-Ida which I am currently finished the first Chemo and awaiting for bloods to recover which could take another 3 weeks!  Had a bit of a curve ball when I contracted covid before Christmas and have been isolating since with no visitors!
I joined this forum initially to get some advice on the SCT journey but there is a lot of information and most of my questions have been answered reading the other discussions.

if anyone has any advice who has gone\going through it would be good.

Stay Positive Blush

Thanks

Garry (Gman)

  • Hi again Gary  and welcome to this corner of the community...... but sorry to hear about Covid....... this is just one of many infections you will have to navigate post SCT.

    The main thing to remember is that these SCT teams have seen it all before and will take great care of you.

    Your job is to do what you're told...... exactly as you are told. So for example if you are told to use the mouthwash every 3 hours...... then set an alarm to do it.... and even set a timer to ensure you are doing it for a good few minutes. The one thing you dont want is to develop bad mucosis and end up with a feeding tube........ I managed to keep clear of a feeding tube for both my Allo (donour) SCTs.

    For contexts - what type of SCT are you having?..... an Auto SCT using your own Harvested Stem Cells or an Allo (donour) SCT?

    From not to your SCT you need to put some weight on as you will lose weight very quickly over the SCT process.

    I had an exercise bike in my room for both my Allo SCTs....... i used it every day during my first Allo and recovered very quickly...... to the point that on the day I left the SCT unit I jumped in our car and drove the 3+ hrs from Glasgow back to Inverness.

    My second Allo All was a different story as I had a bad reaction to the last chemo Melphalan so ended in the CCU Unit then in bed for a good few weeks....... I left the unit in a wheelchair and it took a good 3-4 months of physiotherapy to get me back on my feet and walking.

    You can see my story through the link at the bottom of my posts.

    As challenging as SCT is made to sound it is actually a straightforward process that has been done for many many years with great results.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Gman

    My wife went through a similar process to yourself, diagnoses in Oct 2018, 4 rounds of chemo followed by FLAG IDA. relapsed in December 2020. Has SCT in Aug 2021. Had an allogenic sct, sister was a 10/10 match. Still doing great with luckily no infections or GVHD following.

    If you have any questions, I would be please to help where I can.

    FULHAMBOY (nick)

  • Hi Mike,

    As ever great advise thank you. 
    currently I don’t know what SCT I am having as being transferred to Nottingham for the SCT, currently they have bloods etc to determine way forward.

    Until then concentrating on getting through the two FLAG- Ida cycles Blush And get rid of covid!

    Thanks again

    Garry (Gman)

  • Hi again Gman

    Have you started the Flag ida treatment yet?

    FULHAMBOY (nick)

  • Hi FULHAMBOY (Nick)

    Good to hear about your wife good to hear a positive outcome and hope it  continues.

    I am sure I will have questions once the process for SCT starts.

    Thanks

    Garry (Gman)

  • Hi Fulhamboy(Nick)

    Hope you and your wife are keeping well.

    I have finished my 1st round of Flag.ida along with first consultation with the team who are are organising the SCT where they have found a donor Blush, you mentioned a 10/10 match who was your wife’s sister. I have an unknow donor and match was 12/12 do you know what that means?
    I am just about to back into hospitial for 2nd cycle of Flag Ida before SCT (hopefully) mid March.

    Thanks 

    Garry (Gman)

  • Hi Garry

    12 out 12 is good ,that’s what I had . It’s Human Leukocyte Antigen matching . Hope all goes well for you 

    Mark

  • Hi Gary

    Thanks for your post.

    I'm assuming a 12/12 match is the same as a 10/10 match, ie. Probably the best match you could get. Is there a reason for having a 2nd round of Flag ida, did you first round not get you into full remission?

    That must be quite brutal, my wife found her 1 and only round very tough.

    Hopefully your team will give you advise on future vaccinations following Flagida treatment. My wife cannot have any live vaccines going forward, however after 2 years post transplant with no GVHD she was able to have her MMR vaccine and I'm pleased to say she had no reaction, her next is due in May.

    I hope all goes well for you garland wish you the best on your journey.

    Please let me know if you have any further questions.

    FULHAMBOY ( NICK)

    1. Sorry Meant journey, not Garland!!!
  • Hi Mark,

    Thank you for the information Thumbsupand good wishes.

    i see you are doing well that’s good to see.

    Garry