My dad has been on a journey. In December 2023 he was diagnosed with low risk Myelodysplastic syndrome (MDS). Unfortunately, a year later it had progressed to Acute myeloid leukaemia (AML). He went through treatment, brought into remission, and was able to find a stem cell donor. He is now 3 months out of his transplant, 99.74% engraftment, getting stronger every day and sadly received news that his bone marrow biopsy showed that he has relapsed with 40% blasts.
I know the prognosis doesn’t look good despite him seeming so much more healthy. I’m hoping to see if others can help me understand what his prognosis is. He literally found out Friday and is awaiting his appointment after the weekend. I know everyone’s journey is different, just trying to figure this out and digest it while also finding out what he can expect or should advocate for.
I am so sorry to read of your Dad’s relapse after stem cell transplant. Firstly I wanted to say our support team are here, if you wanted to talk things through our phoneline is open and you can reach us on 0808 2080 888.
Initially, it will be good to see what the treatment team suggest and what options they give, is the appointment early this week? We can talk through things after this appointment if that would be helpful.
We do have a clinical trials support service here which you can refer into, they can look at what trials might be available. I have attached the link here which also has the referral form on - Clinical Trials Support Service | Blood Cancer UK.
I have also added our information here on relapsed Acute myeloid leukaemia (AML), which might give you an idea of what may happen next - Relapse and refractory AML treatments | Blood Cancer UK.
I hope you get some information from the team soon, its very much a one step at a time situation right now and it would be difficult to make comment about prognosis, as like you mentioned everyone’s situation is different and individual. The team may give more information about this if it is something your Dad wishes to discuss.
Take care and know we are here if you need us,
Heidi J (Support Services Nurse)
Thank you so much for the reply. My dad had his follow up and unfortunately they stated that due to the short time between transplant and relapse additional treatment to try to go back into remission and attempt another stem cell transplant won’t be feasible due to the aggressive nature of his disease. They have placed him on a new protocol that will help him maintain quality of life with a possible outlook of up to 2 years. I believe they have prescribed Gilteritinib (he has flt3 mutation). They stated that they do not think that he would be eligible for DLI (I think that’s what it was called?) because there is a high probability that he would develop graft vs host and it could end up being fatal. For now he is doing weekly blood tests to monitor his levels and then will continue to monitor and adjust course as they gain more information.
It was very difficult news to hear. I worry that he has become depressed which will not help him or his prognosis. If anyone has any suggestions, I’m all ears!
Hi, I am 63 diagnosed with Acute myeloid leukaemia (AML) back in April 2023 achieved remission in Sept 2023. In the last couple of months been told I have relapsed. Now looking at further chemo and poss Stem cell transplant. To be honest, I’m struggling with my decision to go ahead with this or not. Anybody else ever felt like this?
We are so sorry to hear about your diagnosis of Acute myeloid leukaemia (AML) and relapse.
We can imagine this is a difficult time for you and your family.
Please know that our support team are here, if you wanted to talk things through our phoneline is open and you can give us a call on 0808 2080 888.
It may be a good idea to have a talk further with your team, or clinical nurse specialist to see what their recommendations are, they will be able to help highlight the benefits and risks of each treatment option.
We can also help talk through this on our support line too.
We do hope others can also share their experiences with you.
I’m sorry to hear this. While I can’t say I know what you are going through I hope that you’re able to find the support you need. This is such a difficult diagnosis.