Hi all! My name is Maria and I am from Greece. My mum, 56 years old was diagnosed with AML -FLT3 on November 2019. On 14th of July, she had a SCT and the match donor was her brother. Till now, the transplant journey was easy - I could say- almost no symptoms and from the first days she was feeling quite well. Yesterday, was an important day for us, as it was the 3 months anniversary after SCT, our first target that unfortunately instead of bringing us joy, brought us tears. . Although she is feeling very well, the doctor said that a blood test showed a high risk of relapse and he was really worried. The good news is that he didn’t find any evidence of leucemic cells, so is she still in remission. So, as the protocol says , in that case she started today chemo pills called Nexavar Sorafenib to prevent the relapse. The next month is critical as it will show how she will respond to the new therapy. Thoughts like her funerary, me and the family getting crazy are on my mind. So tired of this rollercoaster. I wish you all from my heart to be healthy.
thank you
maria
Hi Maria and welcome to our corner of the Community and so sorry to hear about the possibility of your mum relapsing following her Allo (donor) SCT.
I had a different type of blood cancer (a rare Non Hodgkin’s Lymphoma) and had my first Allo SCT back in June 2014 with cells from my brother by December that year I had relapsed so I went back in October 2015 and had a second Allo SCT and found remission in September 2016.
What have her team said the next step would be if relapse is confirmed?
((hugs))
Hi mike !
nice to talk with you ! I have read many of your posts, and I am happy that your journey had a happy end and you are enjoying life :)
the doctor didn’t want to discuss with us about the next step, just to focus on the current new therapy. He only said that there is the option of a second SCT. I think that the FLT3 mutation makes our journey more difficult. I wish I was an hematologist so I could help her 
It is so hard for family looking in and not being able to ‘do’ something to fix this.
AML is complicated from what I have seen but at these times all you can do is trust in her team to put the best plans in place for this all to move in a positive direction.
The main thing I can give you is hope, there is always hope until there is none and I would say that her team are not saying this.
((Hugs)) from the Highlands of Scotland x
