Has anyone else tried Venetoclax after Azacitidine has stopped working?
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Hi @Lin. I can’t help with your question but I’m hoping somebody on here can. It must be scary when one thing stops working? I look
forward to learning more about you 
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Hi @Lin a great big welcome to posting on our forum, obviously you must be concerned and scared as I am presuming Azacitidine has stopped working for you.
I also cannot assist with your question, I hope someone will be able to share their experiences.
You might also like to write down all your anxieties and questions etc. to ask your health professionals.
You might also like to talk to someone on the Blood Cancer UK support line.
I look forward to hearing more about you.
Look after yourself.
It’s actually my husband who has Acute Myeloid Leukaemia… he has been on Azacitidine for over two years but he is having more frequent transfusions and the latest bone marrow biopsy shows that the Azacitidine is not controlling the Acute Myeloid Leukaemia as well now and the Blast percentage is increasing. So they have started him on a combination of Azacitidine and Venetoclax. I have found reference to this being used with patients who have not been treated previously but cannot find anything for patients who have been treated with Azacitidine before.
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Hi , my dad is starting on venetoclax and azacitidine next week after being diagnosed with Acute Myeloid Leukaemia. I will keep you posted how it goes xx
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Hi @Adele. Always great when others can share their experiences. How are you and your dad doing? X
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Hi @Adele how are you both feeling, can you talk to each other and have you got family support?
Lots of questions !!
We are here for you and if you would like to talk to someone the Blood Cancer UK support line is also there for you.
Look after yourselves and be kind to yourselves.
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Hello @Lin , welcome to the Forum. Can I ask if your Haematology team are going to combine the Azacitidine with the Venetoclax or Venetoclax on it’s own? Here is some information about Venetoclax Venetoclax (Venclyxto) | Cancer Research UK. The main issues to consider is risk of infection. Your Haematology team will arrange regular blood tests to ensure your blood counts are stable and ask you to report any signs of infection.
I do hope this helps and do call the Support Line if you need to talk anything through: How to contact Blood Cancer UK | Blood Cancer UK
Take care Gemma
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Hi @Lin ,
I am looking for information on Venetoclax and Azacitidine for my dad. He recently been told that there is no other treatments after the blast cells came back after being on Azacitidine for over a year. Can I please ask how you managed to get the Venetoclax for your husband as the hospital my dad is with are saying it’s only available to newly diagnosed patients.
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Hi @stuj you are obviously a very caring offspring and I am very glad that you have joined us, but sorry you had to.
I see @GemmaBloodCancerUK has given a very good response to @Lin above about Venetoclax
I do not know what the NICE (The National Institute for Care and Excellence) guidelines say regarding the prescribing of this drug.
Obviously you might consider going privately, but I do not know what the answer would be and it could be ‘extremely’ costly.
There might also be health reasons for this decision.
Perhaps your dad might want to ask specific questions of his team first before even considering options
I always write my questions down beforehand and be pleasantly assertive until I get answers.
The Blood Cancer UK support line is there if you would like to talk to someone (certain opening hours apply over the holiday period) and we are about over the holiday period.
How are you both thinking and feeling?
Please do let us know how you get on and really be kind and look after yourselves.
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Dear @stuj
I am so sorry to hear that your Dad is in this position, may I ask how he is?
The NICE guidelines 1 Recommendations | Venetoclax with azacitidine for untreated acute myeloid leukaemia when intensive chemotherapy is unsuitable | Guidance | NICE do say that Venetoclax and Azacitdine is only available for untreated Acute myeloid leukaemia (AML) unfortunately. Can I ask whether the team looking after your Dad have considered Clinical Trials? We do have Nurse Led Clinical Trials service here if you would like to talk to them? How our Clinical Trials Support Service can help you | Blood Cancer UK
If you would like to talk any of this through do please get in touch: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
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