I had a transplant for Myelofibrosis in September 2022. It appeared to have gone well and life was gradually getting back to normal. However, my JAK2 mutation reappeared a couple of months ago. I have now been told I have relapsed and also the number of blasts in my bone marrow indicates that I now have Acute myeloid leukaemia (AML). I will be having in-patient treatment with Azacitadine and Venetoclax, probably immediately after Christmas. I am just hoping to hear about people’s experiences of this treatment. In all honesty, I thank I am looking for hope in the face of what feels like a hopeless situation.
On top of this, two days ago, my husband was diagnosed with a melanoma skin cancer. We are both in shock and I cannot bear that I can’t be with him as he goes through further scans and begins his own treatment.
Hello @Otterfield
Thank you for starting this thread.
I am sorry to read that you have been given a diagnosis of Acute myeloid leukaemia (AML), after having had a transplant for Myelofibrosis. I do hope that you team can support you with lots of information on the Ven/Aza regime, but more so, hoping that others on the Forum will offer personal experiences too.
As a nurse, I know that this regime is usually very well tolerated by patients, but I appreciate you will want a reply that is more honest and ‘lived’ experience of these drugs.
It is completely understandable that you and you husband would be in shock with his and your new diagnoses. Please ask your Haematology team for extra support locally to you. Please know that you are always welcome to call our support line: 0808 2080 888 if you would like to chat anything through.
Do let your team know that about your husband’s new diagnosis too, they may be able to co-ordinate your hospital dates for treatment with his scan dates, it’s worth an ask.
Keep us posted on how things are going for you and your husband.
Take good care, be kind to yourself. Heidi.
Oh, @Otterfield I am so glad that you have posted on our forum as we are here to support you, I would be in complete shock and be thinking ‘why us’.
I have had blood cancer for 20 yrs and had skin cancer on the top of my head in 2016, an operation and skin graft, and it re occurred in 2020, another op, and then this year I have had pre cancerous cells above my lip and treatment.
When I was in shock and it did feel like a hopeless situation, but given time when I came to terms with my situation I did get though it,
Sometimes it felt as if a day at a time helped, sometimes I went down to a minute at a time.
@Heidi_BloodCancerUK has given you a good response and I also believe in telling my medical team exactly how I am feeling and what is going on for me.
It sounds as if you really support each other which is brilliant.
Please do keep posting how you are both doing.
I hope others can share their experiences of your treatment.
Look after yourselves and be very kind to each other
I can see @Heidi_BloodCancerUK and @Erica have already responded with great advice and support.
You have so much going on and it must be so difficult not being able to support your husband or vice versa.
We are all here for you so please keep posting.
Sending lots of love X
I am so sorry this happened especially with from what I understand transplant is so difficult. I have Myelofibrosis and have transplant coming up in a few months. I am terrified of progression as well as I have numerous markers suggesting I am at risk of Acute myeloid leukaemia (AML) transformation. I hope your treatment goes well. Praying for you!