SCT following AML relapse

Hi Nick Fulhamboy, sorry to hear this news, it’s a lot to get the head round but looking back at my journey, although my two SCTs were hard work especially the second one it saved my life and many others will say the same.

SCT Success Stories (LINK) 

Have they said if it’s going to be an Auto SCT using her own Sten Cells or an Allo (Donor) SCT? as there is a distinct difference with regards to post treatment recovery

At the moment my simple advise is take each day as it comes, deal with the now and the future will take care of itself.

Although hard work SCT is all do-able.

Hi mike

You may remember my previous posts from last year when my wife had AML.

It's an allo as her Sister is a good match.

Yes, I remember you and your wife’s journey well Nick.

This blood cancer journey can indeed take twists and turns but based on my journey that resulted in me having 2 Allo SCTs this type of treatment did the job well.

My second Allo was Oct 2015, Remission achieved Sep 2016 and I am living the dream..... especially in light of when I was diagnosed with my CTCL back in 1999 I was told “Mike, I am sorry to tell you that this type of NHL is incurable, yes treatable but you will never be in remission”

So my main initial encouragement is there is lots of hope. My journey was rather bumpy (see my profile) but my SCTs were tailored to fit my type as it had become very aggressive and difficult to treat so we had to be aggressive back at it.

My brother was a 10/10 match so her sister being a good match will reduce some of the ‘rejection’ issues.

Macmillan produced a good info book about Allo SCT. “Understanding donor stem cell transplant (allogeneic)” PDF here

Akways happy to answer questions as best as I can.

Hi Nick 

Your wife’s story is similar to mine. My consultant told me that we are “lucky” to have the Npm1 marker as they know early if you are heading for relapse and by doing so can keep you in remission for transplant.I relapsed very quickly after my last chemo probably due to me having the Flt3 marker as well which apparently is very aggressive.I was quite devastated when I knew relapse was imminent but this soon passed as I felt I was actually no worse off than when diagnosed but I had experienced 5 months of normality again.I had the flag Ida to get me back in full molecular remission which was pretty tough.Once recovered from that they seemed in no rush to proceed to transplant and it was nearly three months till it actually happened.I would be lying if I said it hasn’t been a tough journey but it does get easier as the weeks go by. Hope all goes well for you both x

Hi Mark

Many thanks for your reply.

My wife had FLAF Ida during her first treatments 18 months ago and that as you say was tough.

They are not giving her this now but the drugs I mentioned above in my first post totry and achieve remission. Normally carried out in hospital but as the pandemic is so bad and the Hospital beds so full, they feel as she is still relatively fit and well, this will be done as an out patient. I guess a lot of monitoring coming up again as before.

No problem with that ad quite used to doing this now.  One of the drugs is normally used for CLL vut have been told it will be ok for her AML with a view to trying to achieve remission again prior to transplant.

We have a BIG question to ask next week

With my wifes sister being a doner match, she will soon be offered her covid jab, probably before April. Does this make any significant difference on her ability to donate the marrow, or should she be advised to NOT have the jab until after the blood is taken????

I have read there are no tests or trials being carried out on this subject of effects of covid jab and SCT at present, therefore the doctors will be unaware of potential risks, very worrying tbh.

Nick, truly is a question for her clinical team .