Hi everyone,
My dad was recently diagnosed with Acute Myeloid Leukaemia (Acute myeloid leukaemia (‘Acute myeloid leukaemia ('AML')’)) with a TP53 mutation and at least 3 chromosome abnormalities. His bone marrow blasts are around 50%. He is 60 years old, and apart from feeling tired, his other organs (heart, lungs, etc.) are in ‘pristine’ condition.
The team are planning to start treatment with Venetoclax and Azacitidine, and we are still trying to process everything and understand what this diagnosis might mean.
I would really appreciate hearing from anyone who has had a similar diagnosis (TP53 Acute myeloid leukaemia (‘Acute myeloid leukaemia ('AML')’) or complex cytogenetics) or whose family member has gone through Venetoclax + Azacitidine treatment. It would be really helpful to know:
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Did the treatment lead to remission?
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If remission was achieved, were you or your loved one able to go on to have a bone marrow transplant?
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What was the longer-term outcome after treatment & the transplant?
Hearing about other people’s experiences would really mean a lot to us while we navigate this.
Thank you so much.
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Hi @Georgia1234
I’m sorry to hear about your Dad’s diagnosis.
Very difficult news for sure.
My primary diagnosis is Myelofibrosis. Initially I was treated with Azacitidine.
My condition progressed to Acute myeloid leukaemia ('AML').
I then went into hospital to have intensive chemotherapy in the hope that it would get me to a point where a transplant was an option.
It didn’t deliver result hoped for.
I was then put on Venetoclax and Azacitidine along with Ruxolitinib.
This combination of treatments got me to a point where a Bone Marrow Transplant was a possibility.
My transplant took place in April 2025.
I was on the Venetoclax and Azacitidine combination for about 8 months.
It’s a bit of a slow burner so fast improvement isn’t the normal.
My Consultant said it tended to take around 4 cycles to see a response.
Because of Myelofibrosis being my primary diagnosis it took longer.
Definitely worth your Dad speaking to clinical team as each case is different.
I was 59 when I had my diagnosis so in a similar age range to your Dad.
Hope that helps
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Hi Duncan,
Thanks for coming back to me and sharing your story it’s really appreciated and helpful to hear from someone who’s had a similar diagnosis.
Please can I ask, did you also have a TP53 mutation or something similar?
Can I also ask, how long were you on Venetoclax and Azacitidine prior to your transplant. How many cycles of this chemotherapy combination did you have to get you to remission ready for your transplant?
Is there any maintenance therapy medication you take now following your successful transplant, to keep it at bay?
Sorry for all of the questions, we’re just trying to work out a treatment plan for my dad based on other people’s experiences.
Thank you very much!
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Hi @Georgia1234
No problem and glad to help.
As my primary diagnosis was Myelofibrosis I had different mutations. I do know others I met who were Acute myeloid leukaemia ('AML') diagnosis and were on the Venetoclax and Azacitidine combination but wouldn’t know mutations.
I went on the Venetoclax and Azacitidine April 2024 until early February 2025.
Cycle normally 28 days with Venetoclax tablets daily. Azacitidine 5 consecutive days of injections in days 1 to 5 of each cycle.
Transplant team wanted my blast count to be close to 5%. It was very difficult to accurately work out my blast count due to fibrosis scaring.
There was immunosuppressant medication for a few months after discharge from transplant.
Now it’s just a few pills to reduce risk of infections.
If your Dad goes to transplant his immunity will be completely wiped due to the high intensity chemotherapy they have to give you to get you ready for transplant.
The @BloodCancerUK-SupportTeam are another great source of advice and @@Ceri_BloodCancerUK also shares some great information.
Getting the cells for transplant is very similar to a blood transfusion.
Not sure if your Dad has a family member who is a potential match for him or if you’re reliant on a donor being found for you.
Both my siblings passed with cancer (not blood cancers) so I was reliant on an anonymous donor who was a 9 out of 10 match.
Hope that helps and if you have more questions please just ask and I’ll do my best to share.
Just remember I’m not a doctor and that every single person is different even if their diagnosis appears to be the same.
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Hello there @Georgia1234, I just wanted to welcome you to the forum too. I’m really sorry to read of your dad’s diagnosis, that sounds really worrying. I live with a different but related myeloid disorder which can progress to Acute myeloid leukaemia ('AML'), called Polycythaemia vera ('PV'). It’s lovely that you’re here to get an idea of other people’s experiences to support your dad.
May I share the Blood Cancer UK information about Acute myeloid leukaemia ('AML') in case it’s useful. There’s information included about treatments and further links with more detail: Acute myeloid leukaemia (AML) - what it is, symptoms, tests, treatment, prognosis and support. | Blood Cancer UK
Perhaps you might like to look around the forum as I know of other members who have shared about Acute myeloid leukaemia ('AML') and its treatments. You can use the search box at the top and Related Topics below.
I’d add to all the great information and personal experiences @DuncanB has shared by suggesting you give the Blood Cancer UK specialist nurses a call on 0808 2080 888. They really know their stuff and will be back on Monday to discuss medical queries and other support for you and your dad.
Hope that helps a little @Georgia1234, thinking of your dad and you.
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