Chemo for AML - what's it like?

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My 74 year old mum was diagnosed with AML last week and has been offered chemo (azacitidine and venetoclax) - which I understand would be continuous until it stopped working. Could anyone please share their experiences of a similar regime ?

She is frightened by the long list of side effects and how severe they might be? Thank you. 

  • Hi  and welcome to this corner of the Community although I am always sorry to see folks joining us and sorry to hear about your mum. I am Mike and I help out around our various Blood Cancer groups.

    I don’t have AML but I was diagnosed back in 1999 with a rare, incurable but treatable type of NHL (Stage 4a) so although my Blood Cancer ‘type’ is different I appreciate this journey rather well.

    Let's look for some of the group members to pick up on your post. There actually have been a few new members join recently so why not click on the AML Group title and this will bring up all the posts. Have a look at them and as always you can hit reply to any post and see if the member is still using the community.

    I have had over 800 hrs of chemo on my journey and yes, the information about side-effects can be scary….. but honestly most folks don’t have them all and when they have they are controllable - let’s look for your mum to have a smooth journey.

    It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow a few working days for a reply.

    For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

    Always around to help more or just to chat ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hello Amber, Starting chemo for AML can seem overwhelming, I am seventy seven( female)

    diagnosed six months ago, now starting fifth round of chemo, I think I know how your

    Mum, and also you, must be feeling.I have had a few stops and start with chemo,

    • but on the whole I have coped, the Azacitidine injections for seven days can cause 

    bruising and tenderness , sometimes itching.Advise from a member of this

    forum was to use arnica cream, which I have found helps, also aloe vera

    the medication seems daunting at first, my daughter made a checklist of

    AML meds along with other regular meds( I have Parkinson’s) I now know

    when to take and remember with or without food. Always take the anti sickness 

    tab before treatment, you will be given something stronger if sickness becomes 

    a problem, for me I haven’t needed extra med. constipation is often an issue,

    you will be given a laxative if you need . Try to drink the recommended 

    two litres of liquid. My biggest problem has been losing my sense of taste,

    everything is tasteless and actually feels unpleasant when chewing,

    The regime of the time travelling to and from hospital ( and often

    the wait once there) becomes routine, although other things often

    get missed ,also your Mum will probably feel tired for a lot of

    the time. I hope that once she has started it will all make sense,

    there is a lot to learn about AML, and getting used to a few  setbacks 

    e.g. low blood results, become part of the condition, also everyone 

    copes differently.

    I wish you and your Mum all the best for this new phase of your lives,

    let me know how you are managing, and ask if there is something 

    you think I might help with. Sakchi 

    .

  • Hello Sakchi and thank you so much for all the information- it really helps to hear positive news from someone in a similar position (my mum also has parkinsons), although I am sorry you also have this diagnosis.  It is good to know that setbacks are to be expected. Looks like my mum will start chemo next week so we will see how she tolerates it, but your post has definitely given me hope. Thanks again and good luck on your journey x

  • Hi Amber, 

    My dad was diagnosed last November with AML when he was 69. He was put onto the Venetoclax Azacitidine regime too - he experienced some side effects, but on the whole, he coped very well with them. Definitely take the anti-sickness meds and watch out for constipation and the resultant piles, which can be more of an issue than the chemo itself! Get your mum to drink plenty of water and try to take gentle exercise. I read lots and a phrase which stuck with me was that illness doesn't hang around in a babbling brook, it prefers a stagnant pond, so keep moving! 

    My dad went into remission on this regime after four cycles of the treatment and was then referred for a SCT - a cure for AML! Unfortunately, we hit a snag and he was off chemo for eight weeks and the AML has come back, so he won't be going in on the 7th November as planned. He needs to go back onto chemo and regain remission and we'll try again.

    Got our appointment at 12 noon today - where we'll find out more about the plan. Main point is, there's always hope and things are improving all the time in AML. 

    xx

  • Hi Jaheen thank you for sharing your dad's progress - such an encouraging, hopeful story which I will definitely share with my mum. She started chemo today, they struggled to get blood as she hadn't drunk enough so that is something we definitely need to work on. I hope you got the plan you wanted for your dad, thanks again x

  • Oh yes, I have to encourage (nag) my dad to drink water. I've started to keep a daily journal again of foods and fluids. My sis-in-law bought dad this great water bottle with a sort of crystal spear center and motivational words on the lid. It's 500ml so I try to get him to have three of those in 24 hrs. I used to mix flavoured water in with filtered water and heat it a little to take the chill off. Pear and Plum is his fave - your mum may not find flavoured water such a chore to get through Wink

    Dads appointment went really well. He said he's back on track and feeling 10/10 again today. Doc thinks a couple of months to get back into remission and then back to the SCT plan. 

    Sending love and strength x

  • Just wanted to update that dad is back in remission and is scheduled for his SCT next week! Hope your mum is doing well x 

  • That is great news !! Thank you for sharing and I hope it all goes smoothly next week

     Mom is doing OK thanks- currently mid-cycle 3 of chemo which she is tolerating fairly well. The side effects haven't been anywhere as bad as I expected,.although so many ups and downs that I feel I am on a roller coaster at times.

    We see the consultant tomorrow,  which is always nerve wracking! 

    Again,.good luck for next week!

  • Hi  I know this thread is a few months old now, but as I'm in a similar situation I wanted to see how your mum is and  how you are, and  how your dad is? It is so helpful to see other people sharing their stories. 

    I'm another one here with with a father with AML. He is 81, but it took us by surprise as he was very fit and active. In October last year he and mum were driving around the desert in Morocco in 4x4s and the year before they were driving around Peru, then at the end of December he was diagnosed.

    He has also been put on the Azacitadine and Venetoclax regime - initially with each cycle starting every 4 weeks. We have been told the leukaemia itself is in remission but his blood counts just don't seem to be coming back up. After round 3 he ended up in A&E with an infection, which delayed the start of the next round and during that time his blood counts started to recover. So now he's been moved to a 6 week cycle, but the bloods don't seem to be recovering now. Has anyone else had this?

    Also, just to say it is reassuring to hear someone else talk about the change in / lack of taste. It seems completely random as to what my dad can bring himself to eat now - no bread, no chocolate. That, the fatigue and the constipation have been the main side-effects he has had. They could be worse, but still incredibly frustrating for him. 

    Thank you 

  • Hi I am sorry to hear you are in the same situation- it's tough.

    My mum is doing fairly well thanks (nearly a year from diagnosis) - she managed around 7 x 4 weekly cycles with very little extra support but then had a fall and chemo was paused for about 7 weeks whilst she recovered in hospital. She now has heart issues so has also been put on 6 weekly cycles and Venetoclax reduced from 14 to 10 days. Only just started the first 6 week cycle so will let you know if her blood count does come back up afterwards.

    I understand how frustrating the fatigue etc must be for your dad when he was so fit before- driving around Peru sounds amazing! My son is currently hiking in Morocco and that looks fantastic too.  Unfortunately my mum also has Parkinson's which has deteriorated badly since the AML diagnosis - might not be a direct connection but we were warned that could happen. I am much more involved in her daily care now and just trying to enjoy the good days.

    I hope.your dads blood counts start to improve soon - Mom has had a few 3 day courses of neutraphil injections before some rounds to get her to a good starting point.