I have been living with a myeloproliferative disorder for approx 25 years. I went from PRV to myelofibrosis and 3 days ago Acute myeloid leukaemia (Acute myeloid leukaemia (AML)). I truly am in shock. I had a liver transplant in 2014 as a result of my blood cancer and now have Acute myeloid leukaemia (Acute myeloid leukaemia (AML)). I’m tired of being sick. It’s so darn intrusive in my life. The doctor has booked yet another bone marrow test on Tuesday and potentially chemo starting Wednesday. I know I have to do this but I had been told prior to being diagnosed with Acute myeloid leukaemia (Acute myeloid leukaemia (AML)) that I was an excellent candidate for a bone marrow transplant . I am scared and frustrated. I have no idea how debilitating chemo will be. I don’t want to be morbid but if finding it difficult to find some positive stories. I am strong and have been through a lot and fought through it and I want to believe I will be able to get remission for this and potentially get a bone marrow transplant. Any input or encouragement would be very welcome .
Hello there @Dmy, welcome to the forum. I am really so sorry to read of the progression of Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) you’ve lived with, and for so long! Wow so for 25 years you’ve tolerated Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)), I’m in awe.
A mere 2 years ago I was diagnosed with Polycythaemia vera (Polycythaemia vera (PV)) so can perhaps appreciate some of what you managed for so long, but we obviously each have our own unique health histories and responses to treatments.
I hope the bone marrow biopsy went as painlessly as possible—one less thing to tolerate any anxiety about once it’s over with, at least.
While I haven’t lived with Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) as long as you, nor experienced mine transforming, I know there are many people around the forum who have first-hand experiences of MF and Acute myeloid leukaemia (Acute myeloid leukaemia (AML)), some even dealing with their diagnoses changing like yours. Perhaps have a look around the forum and reach out to others with closer lived experiences to you, I’m thinking of a couple of lovely folks who have supported relative newbies like myself.
If you’d like to talk with one of the lovely specialist Blood Cancer UK nurses, they’re available on 0808 2080 888. They’re often around the forum answering our queries too and really know their stuff. They’ll be able to direct you to information about your potential Acute myeloid leukaemia (Acute myeloid leukaemia (AML)) treatments and other resources.
Hope that helps a little, thinking of you @Dmy. Please know that you’re not alone with that new diagnosis and that support is available.
So I went to the leukemia clinic today and they gave me the worst news I could imagine. I am offered a milder dose of chemotherapy next week to try and manage blast cells as my myelofibrosis has progressed to Acute myeloid leukaemia (Acute myeloid leukaemia (AML)). I am not a candidate for Stem cell transplant until or if they can get my cancer into remission. If they give me Azacitidine and it doesn’t go in to remission I only have approx 6-8 month survival. I’m devastated. Not sure what to do now
Hi @Dmy just give yourself time to take in what you have been told today, be very kind to yourself.
Perhaps try and take things a day at a time, it is all I can cope with.
What you might consider is writing down all your fears, questions and practicalities to ask your specialist nurse or consultant.
Don’t forget the Blood Cancer UK nurses are there for you on 0808 2080 888 as well.
Please keep posting as you are part of our forum family.
Really look after yourself
Dear @Dmy,
I just wanted to reach out and offer our support to you having read your post. I am so sorry to hear your news. It is totally understandable that you are devastated and we are all here for you. I do hope you have good support around you.
It is going to take time to process this information and like @Erica said, try and take one day at a time and be kind to yourself. Whilst Azacitidine is a less intensive treatment option, it can still be used to help people get to a stem cell transplant and it is normally well tolerated.
Please do talk to your team and ask your Clinical Nurse Specialist for any help and support you need. It’s important that they know how you are feeling so that they can best support you. I have also enclosed some information that you might find helpful to read Practical Support
If it would be helpful to talk to us, please do not hesitate to give us a call 0808 2080 888 Blood cancer information and support by phone and email | Blood Cancer UK. We are all here to help and support you @Dmy
Take care
Fiona (support services nurse)