Advice please for AML / SCT

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Hi 

I’m wondering if anyone has some advice please 

my hubby became very unwell in April by the beginning of may he had been diagnosed with AML and admitted for intensive chemo, the short version so far is he’s now had 2 intensive chemo treatments plus 1 flag Ida which finished 8 weeks ago ( horrendous experience and just starting to recover)

prior to this he was super fit and healthy , late 40s and very very active 

so we were told he is in remission after chemo 1 but after chemo 2 it was still showing in the bone marrow after the biopsy, leading to the flag Ida treatment followed by the SCT , he was discharged and his picc line removed last week but then we had an appointment come through for his consultation for SCT at another local hospital 

we are wondering what happens now ? We have been given virtually no info on the SCT which I’m guessing is what the new appointment is for , I’d just like to know what happens now really , what is discussed in the consultation, what’s the process , what’s the time line ? Is it quicker as it’s acute ? does this mean there is a match etc etc 

I have read lots of the actual procedure of the SCT and am fully aware of what to expect after but it’s this but now where we feel we need some info 

thanks to anyone who reads / responds 

hope you all have a lovely day 

  • Hi CJ1

    My wife went through a similar experience as your husband. 3 sessions of intensive chemo then Flag ida.

    Remission was achieved but relapsed 20 months later. SCT followed.

    If your husband is expected to have a Stem Cell Transplant, if he needs a donor then maybe family members may be available most likely siblings, if not suitable the register will be checked for suitable doners. It may be that he can use his own cells.

    The appointment I guess will be to discuss the options available, the time line will depend on 1, your husband's current situation and blood results, 2, The availability of a suitable donor. He will need to be in full remission before SCT can be performed, if not further treatment will be given to get him to this. 

    Drugs could be given to your husband over a period of a few weeks at hospital and following this and prior to transplant as my wife did, be given both orally and self administered injections to get her ready for transplant and a window will be advised on this timeline.

    Keep positive, the Team will know what to do for your husband, he is in the best possible hands.

    My wife is currently 27 months post transplant and doing great.

    Please let me know if I can be of any further help.

    NICK (FULHAMBOY)

  • Hi  and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups as well our Stem Cells Transplant group.

    I don’t have AML but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of NHL eventually reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well....... especially as I have had 2 Allo (donour) SCTs.

    So if he/you have not been seen by the SCT team this is early days........ but once the first meeting happens his bloods will be taken and a search for a donor will start........... has he any siblings?....... this is normally the first stop.

    He will have to go through some tests to ensure that he is fit enough for the SCT process.

    I first meet my SCT team on 14 Feb 2014. I was only 2 cycles in to my 6 cycles of salvage treatment (R-EPOCH). I finished my chemo on the 26 April and started the SCT process on the 1 June 2014.

    I had to have 2 Allo SCTs - long story but I am officially 8 years old tomorrow on the 21st Oct, I am turning 68 next month and doing great.

    Good to see my friend  has picked up on your post.

    Just ask your questions and we will do our best to help you out.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thanks for your response it will put our minds at rest knowing there are people out there who have had similar experiences, 

    it has already been established that it’s a donor from the register , sibling is not suitable and nothing has been mentioned about using his own, 

    the thing I still don’t understand and can’t take in is they say he’s in remission but needs a stem cell transplant, it just doesn’t make sense to me

    thanks again 

  • Hi Mike.

    HAPPY 8TH BIRTHDAY TOMORROW.

  • Thanks Nick - the 4 granddaughters will be here and the cake is made Joy

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Cj1

    I understand your concerns, remission is a great place to be, don't get me wrong, but the Team will be aware of the chances of relapse and if they think this is likely in the near to short term future, them it's best to have the SCT sooner rather than later.

    As long as your husband can stay in remission with no evidence of discease then this is an ideal time to have the transplant. They will continue to check his bloods and bone marrow going forward up to SCT.

    Nick ( Fulhamboy)

  • Your welcome, please come back with any questions you may have going forward and I will try to help.

  • Hi again  and you got a great reply from Nick about the 'why go for SCT?'

    Remission in blood cancers...... regardless the type, is a very precarious line to walk.

    The longest remission, well partial remission during my first 14-15 years was about 9 months and then I was back onto the next treatment...... in late 2013 things quickly went out of control so the 'only treatment' that was going to do any good for me was Allo SCT (you can see my story through the link at the bottom).

    Going in to SCT I had a few years on the clock..... and if SCT failed I would only have palliative care left....... now I am 8 years out from my second SCT, I remain in remission and am doing great but the more amazing thing is that a few new treatments have been developed for my condition over these past 8 years...... so a double celebration.

    During discussions with my great SCT team they said to think about a computer. The Bone Marrow is like our hard drive and our lymphatic system the software.......... the more our body goes through, especially the bone marrow when dealing with our blood cancers and all the other medical issues that goes with this......... add on the toxic effects of the treatments........ the bone marrow (hard drive) gets worn out and it's ability to deal with any recurrence gets limited quickly..........

    Stem Cell Transplant basically cleans out the bone marrow and starts from scratch. You will see people post about having to get their childhood vaccinations again.......... this is a demonstration of how thorough the cleansing process is...... so this is why you will here us talk about our re-birthdays.

    When I was having my re-vaccinations our youngest granddaughter was having the exact same time as me Grimacing

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge