Hi. My 81 year old Mother was diagnosed with Acute myeloid leukaemia ('AML') 6 weeks ago. She decided today that she will try Azacitidine. She’s obviously nervous as she doesn’t know what to expect. Can anyone give any honest feedback please.
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Hi. My 71 year old husband has just completed his first cycle of aza/ven and has unfortunately been in and out of hospital for a lot of it. It’s hailed as a less intensive therapy but I’m not so sure. The constant trips to hospital for treatments not to mention blood tests wear you down and because of your vulnerability with low counts (if and more usually when you succumb to an infection) it can of course be life threatening, I obviously realise that it might be different for others and I would like to have been able to be more positive as at the start of his treatment we were optimistic of buying some quality time with this aggressive disease. With hindsight would we have tried the treatment? Maybe not, but with the diagnosis what options do we have? I hope your mum does well on the treatment if she decides to go with it.
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Sorry to hear your husband is having a tough time. This is what my mum was worried about to be honest. She’s slept on it and has decided not to go ahead with treatment.
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Well done to her making that difficult decision. As someone said to us recently, don’t count the days but make every day count.
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Hi @Baughy
Welcome to the forum. I’m sorry to read about your Mum’s diagnosis. You will find everyone here is really supportive and understands the challenges of living with blood cancer.
When I was first diagnosed aged 59 with Myelofibrosis I was on Azacitidine for 3 cycles.
Apart from the travelling each day for each cycle I dealt with it reasonably well.
Side effects weren’t extreme for me.
My condition progressed to Acute myeloid leukaemia ('AML') and was then put on high intensity chemotherapy.
It didn’t produce the results hoped for.
I was then on Azacitidine and Venetoclax for about another 8 cycles which managed to get me improvement and reduced blast counts.
Everyone is different and it’s important that your Mum makes the right decision for her.
What I would say that when you get a blood cancer diagnosis regular hospital appointments become the norm and sometimes require blood and platelet infusions too.
If you and your Mum wanted to speak to someone the wonderful @BloodCancerUK-SupportTeam and their nurses are excellent.
Here is the link with details on how to contact
Take care and best wishes to you and your Mum
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Hi @SusieQ and welcome to the forum.
I’m sorry to read about your husband’s diagnosis. Hopefully coped well with the first cycle of Azacitidine and Venetoclax.
Infections are sadly part of the challenge of dealing with blood cancer.
I know I had a few when on Azacitidine and Venetoclax combination although I suspect that this might have been related to my PICC line.
As you rightly point out, while Azacitidine and Venetoclax are classified as less intensive.
Of course less intensive doesn’t always mean easier.
I know that the submission for approval of the Azacitidine and Venetoclax combination states that improvement can happen after a couple of cycles.
My Haematology Consultant said that in her experience it’s typically 4 cycles before they see as a response.
It’s definitely a commitment with all the hospital appointments.
I live in the Scottish Highlands and in the first 3 months of treatment for Myelofibrosis we were down at the hospital about 11 days of each month. Each day was a 100 mile round trip so I understand how hard it is.
Take care and best wishes to you and your husband
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Hello @Baughy
We are so sorry to hear about your mum’s diagnosis. We can imagine this is a difficult time for you both and please know that you can call our support line on 0808 2080 888 if you would like to talk through any of this or email us at support@bloodcancer.org.uk.
It’s completely understandable to feel nervous about starting treatment, and many people tell us that not knowing what to expect can be daunting.
I can see that other members have already shared some experiences of azacitidine. You may also find our information on non-intensive Acute myeloid leukaemia ('AML') treatment helpful: Acute myeloid leukaemia (AML) non-intensive treatment | Blood Cancer UK
As stated on this page ‘azacitidine is a chemotherapy drug that is given by injection just under the skin (a subcutaneous injection), usually into the tummy, arm or thigh. The injections are typically given daily for 5 or 7 days, with the treatment cycle then repeated every 4 to 6 weeks.’
We would advise that your mum lets her Clinical Nurse Specialist (CNS) know how she’s feeling. They can talk through the treatment in more detail, answer any questions she has, and make sure she has the right support in place for making this decision. They can help with talking through the benefits and risk of treatment too.
Do take care & warm wishes,
Emma (support services nurse)
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Hello @SusieQ
Thank you for sharing your husband’s experience. We are so sorry to hear how difficult the first cycle has been for your husband. The frequent hospital visits, blood tests, treatments and admissions can be incredibly demanding, both physically and emotionally.
While azacitidine and venetoclax are often described as less intensive treatments, they can still have a significant impact on energy levels and particularly when blood counts are low meaning there is a further increased risk of infection.
Do keep your husband’s Clinical Nurse Specialist (CNS) or treatment team updated on how he is doing so that they can aim to support you both as best they can and aim to help manage side effects and symptoms.
I can see that @DuncanB has sent a really great reply. If you would also like to talk with one of our support nurses, do get in touch on 0808 2080 888.
In case it is helpful at all we do also have a page on Blood cancer: mind and emotions | Blood Cancer UK which includes small things we can do to help with our everyday well-being.
Do take care & keep us updated,
Warm wishes,
Emma (support services nurse)
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Hi
And thank you for your message. Your circumstances sound very similar to ours. My husband was diagnosed back in 1992 with what was then described as Myeloproliferative Disease with a platelet count of 1400. After a short course of Hydroxyurea (as it was called then) they fell back down to around 300. He was then diagnosed with Essential Thrombocythaemia ('ET') before Myelofibrosis in 2004. And in all those years his only medication was a daily aspirin. Things progressed this year after a bout of flu and he was diagnosed with Acute myeloid leukaemia ('AML') in July.
He’s finding the Aza/Ven difficult to tolerate which is why we would advise anyone thinking about it to ask lots of questions. I know some people have an easier time on it but this first cycle (and we do understand this is usually the worst) have issues all the way through. Feeling full anyway because of a huge spleen, along with nausea aren’t easily managed even with anti sickness medication. Additional fatigue which anyone with a blood cancer knows all about and the endless round of treatment days/transfusions/consultations along with, like you a long journey to and from the hospital (we live in the West Country) its not an easy option. And all this before you start getting temperature spikes and infections.
But we’ve started and will attempt to see it through and hopefully will have some quality time ahead again.
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Hi @SusieQ
My spleen was about 2 to 2.5 times larger than it should have been when diagnosed with Myelofibrosis.
They started me immediately on Ruxolitinib a JAK2 inhibitor as well as Azacitidine.
It was very effective in reducing spleen size although took quite a while.
Obviously with your husband being Acute myeloid leukaemia ('AML') diagnosis it’s a bit different.
It may though be asking the question of your clinical team to get their thoughts.
Yes long journeys tough. I found the first day of the cycle with Azacitidine the hardest, especially if later in the day before I got my injections.
Fingers crossed things settle and get a bit easier.
My husbands is currently around that size. He was on Momelotinib for a few months before the Acute myeloid leukaemia ('AML') diagnosis and that was reducing it down reasonably quickly. Maybe it’s worth asking the question about trying a Jak2 again further down the line.
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Baughy, I wanted to check how you and your mum are doing since deciding against treatment? That’s such a difficult call to make, and I hopeyou are both doing as well as can be under the circumstances. You might find our page for family and friends useful, with more on carers’ rights and support as you navigate this alongside her: My friend or family member has blood cancer.
@SusieQ, I’m sorry your husband’s first cycle has been so rough, that sounds relentless. I noticed your pondering about whether it’s worth revisiting a JAK2 inhibitor further down the line and agree it’s one for his consultant to weigh in on given his specific picture, so for sure worth raising at the next review. If it would help to talk it through more broadly first, do let me know and I’m happy to bring our nurses into the thread - or you’re welcome to give the Support Line a ring on 0808 2080 888 (option 1) any time.
Keep posting whenever you need to, both of you, we’re here. Take care,
Ceri - Blood Cancer UK Support Services
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First time on here in a while. My husband has suffered a large, acute epidural hematoma (inoperable due to infection) annd now suffering stroke like symptoms. All due to his low platelet count after his first cycle of aza/ven we have been told. Just another of the many side effects that we sign off on in desperation of getting help with this terrible disease.