Hi I am newly diagnosed with Acute Myeloid Leukaemia and due to being 65 and not having the fitness I am going down the low intensity chemo route with Venetoclax tablets and Azaccitidine injections. Has anyone done this route? What’s it like? What’s the prognosis for remission? Seems that I have the NPM1 gene - does that help? Any feedback would be greatly appreciated
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Hi @ChrisB a great big welcome to our forum and i hope someone will be able to share their experiences with you.
It must have been a great shock for you,
I was diagnosed with another Leukaemia at 53 yrs old and I am now 72yrs old and life is good and I have improved my fitness a lot, I am now a great walker and a Pilates girl.
It might be worth asking your medical team these questions as we are all unique, special, people and your medical team know you (or will!!) better than us.
Being diagnosed so recently (I was also diagnosed at this time of year) you will probably feel a bit in limbo till into the New Year.
However that gives you the opportunity to write down all your fears and questions you want to ask your medical team.
Please keep posting what it is like being you over the festive period as we will be about.
Be kind to yourself as you have had a massive shock
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Hi @ChrisB
Welcome to the forum - although I’m so sorry you’ve needed to come here.
Having been diagnosed myself with Acute Myeloid Leukaemia, I’m sure you must be feeling pretty shocked and worried at the moment. I was younger than you when I was diagnosed, so I had the more intensive chemo (and stem cell transplant) so I can’t help you on the less intensive chemo front - but there are quite a few people here who do have experience of it, and I’m sure someone will be able to answer those queries. As for prognosis and gene mutation impact, it’s probably best to clarify that with your consultant, because everyone’s situation is individual and different, and only they have all the pertinent info.
But from what I’ve read on this forum, people do get into remission with the less intense chemo, and manage to enjoy life. The treatments are always developing and improving, too. In the short time Acute Myeloid Leukaemia bulldozed its way into my life (2.5 years ago) there have been some big advances heralded in the news (although they’ve yet to make their way into hospitals, I think.)
How are you feeling in yourself? Did symptoms prompt a disgnosis, or was the Acute Myeloid Leukaemia discovered through a routine blood test? I hope you haven’t been feeling too poorly with it. And I hope you have some support too - someone to share the burden with. But as you know, we are here, should you need us.
All the best X
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Thank you for your kind words. My wife took me to A&E as I had lost my part of memory. They diagnosed it as a TIA and confirmed via an MRI and lumbar puncture that I didn’t have a bleed. So my wife and son were with me when a doctor I had not seen before came in and basically said they had found Leukemia (Acute Myeloid Leukaemia) so we all were pretty devastated. They offered me the intensive chemo but as I was borderline they advised I take the low intensity route, I got a second opinion and they said the same. So here I am waiting to go in to hospital to get it started. I have black days as I am sure we all have, my wife is so supportive but I worry about her as it’s a lot to take in and our first grandson arrived in the middle of this and her 89 year old mother is also unwell. So I am not really coping well - but I am sure that’s the same for everyone
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Hi @ChrisB I was actually given my diagnosis by a gynaecologist, so like you certainly not expected, so I remember what the shock was like and I felt in a complete bubble with the festivities and new year celebrations going on around me.
I came home and wrote my will and funeral music.
Yes, it is so natural to have ‘black days’, the why me’s etc.
You say you are not coping well, but perhaps just naturally.
I am glad that you got a second opinion.
A great big congratulations on your first grandson, enjoy every moment as babies grow up so quickly.
Be very kind to yourselves and spoil yourselves, you are the same person you were before your diagnosis. Keep posting
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Thanks for your kind words.
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Oh @ChrisB, what a traumatic way for you all to find out - I’m so sorry. But thank goodness they took the time to investigate, because it sounds like they identified it before you felt too ill, which is so helpful to your treatment and recovery.
Yes, those black days hit me too, initially. It’s such a ‘big’ diagnosis, and we often have preconceptions about the illness, perhaps from old films, books or news stories etc. And none of that adds up to a happy outlook. But actually, Acute Myeloid Leukaemia is so much more treatable these days, and through either route - the strong or less intensive chemo. This isn’t necessarily the dire situation it at first feels.
What I found to be really important, was getting on top of my fear so that I could then get on with some practical stuff (packing for months in hospital - the intensive chemo requires that) and to have space emotionally to appreciate my family’s support, and to brace for what was coming (the side effects of intensive chemo.)
Everyone, I suspect, gets on top of their fear or worries differently. Personally, I needed to brainwash myself into thinking I would without doubt get through this and be all the healthier as a result, so I listened to guided meditations/self hypnosis (found on YouTube) that dealt with envisaging your body being completely healthy and cancer-free. I did this twice a day, and within a few days my entire outlook became immensely positive. I really started to believe I had a future, and it kept me sane and calm throughout the following months. So whatever tactic you can think of - go for it. Any moment where you are distracted from Acute Myeloid Leukaemia is a good moment at this point! And anything that helps you to feel positive is treasure indeed.
Oh, I also found Leukaemia Care’s long list of survivors’ stories so encouraging. They have dozens and dozens of leukaemia survivors describing their experiences- with plenty of Acute Myeloid Leukaemia stories. I trawled through these repeatedly because they were a real comfort - especially those stories that were so like my own. I highly recommend them.
I’m sorry too that your wife has so much on her hands. She can ring the support helpline here too, if she needs to talk. The good thing here though is that the baby will keep gurgling and being delightful whenever you and your wife feel up to seeing them, and could be a real moral-boost on low days. A new baby in the family is always a special thing.
I hope you don’t have to wait too long to get cracking with your treatment. On the one hand we have little time to mentally adjust to the traumatic situation we find ourselves in, but on the other, at least we’re being treated before we’ve even fully absorbed we have a disease! Maybe that’s a good thing - not too much time to dwell.
Please do keep messaging if you’d like. And remember: Many people get through this. Why shouldn’t that be you? That’s what I told myself, and eventually I began to believe it.
Warmest wishes.
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Dear @ChrisB
Thank you for posting and I do hope you are finding the forum a supportive space? May I ask whether you have been allocated a Clinical Nurse Specialist (CNS) that you can talk to and ask any questions? The CNS is a vital contact going through a new diagnosis and treatment as you will need support and guidance for treatment times.
Venetoclax and Azacitidine is an outpatient treatment which is a combination of subcutaneous injections (Azacitidine usually over 7 days) and tablets (Venetoclax). You will have blood tests to ensure your levels are safe and you will be given guidance about reporting any side effects or signs of infection.
Whilst this treatment is talked about as low intensity it remains effective, the combination of Venetoclax (VEN) and Azacitidine (AZA) offers an alternative to intensive chemotherapy with potentially less toxicities for those with NPM1 mutated Acute Myeloid Leukaemia. I would recommend talking to your Consultant about prognosis and remission rates.
I have added some links below for you and please do call us if you would like to discuss this further: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
Acute myeloid leukaemia (AML) - what is it, symptoms and treatment | Blood Cancer UK
Azacitidine | Macmillan Cancer Support
Venetoclax (Venclyxto®) | Macmillan Cancer Support
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Thanks for your suggestions. Am in hospital now awaiting treatment but have an infection and my blood numbers are low so starting with platelets transfusions and blood transfusions.
One thing I am learning is whatever you think is going to happen probably won’t and definitely not to any timescale. I am just having to go with the flow……
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Hi @ChrisB I think your idea of going with the flow is a really brilliant one.
Oh, and keep posting and take care.
Yep, there’s going to be lots of waiting, and unexpected directions, that’s for sure! You’re off to a brilliant start by just going with the flow - no point getting frustrated by things not happening as expected.
I hope you’re not feeling poorly with the infection, or from the lack of red blood cells? It’s amazing how much better you feel after a transfusion of the red stuff - even if you hadn’t been feeling off. So fingers crossed you will feel perkier soon.
And very best of luck with the chemo, when it starts.
Hope your wife us doing ok too.
All the best.
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Thanks. My dear wife is going through it as her mother is in Worcester hospital under end of life care. So she’s going between both hospitals - it’s a lot but my son has stepped up (as have my two daughters) and are supporting their mother, bless them.
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Oh your poor wife - but wonderful your children are helping her. That’s the problem with cancer - it affects the whole family, not just the patient. But thinking ahead - hopefully you will be at home and getting better in a few months, and all your family can sigh with relief and appreciate the good times again.
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Oh @ChrisB it is so important that your wife looks after herself as well as she looks after you and her mother.
Carers are the forgotten heroes in all this, who asks how they are, but they are the king pins in all this.
Look after and be kind to yourselves and keep going with the flow
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