I’m wondering if anyone has been through a similar situation to my dad. He is 81 years old and was diagnosed with Acute Myeloid Leukaemia in January this year. He is otherwise fit and healthy (in October 22 he did a 4x4 driving holiday around the Moroccan desert, to give you some idea of how active he was).
On diagnosis he was immediately admitted to hospital for 5 weeks, to start treatment of Azacitadine and Venetoclax. Aside from a bout of sepsis on day 2, he took it all very well. After that he was released and until now has been going in for a cycle of treatment every 4 weeks.
However, the day of the London Marathon (I was working there so remember it vividly) he got an infection and was admitted to A&E. Aside from having a terrible time in hospital, being put on general wards and not being treated very well, this meant that his next cycle of treatment was delayed by a week.
During this extra week off, his blood counts started to come back up again. And so now he is on a regime of treatment every 6 weeks.
At the last bone marrow test he was also told there is no sign of the leukaemia left in his bone marrow. Hurray we thought!
But despite this and despite the extra time between cycles of treatment, his platelet count is still very low (down to 1 today). Has anyone else had this? I need to get hold of a copy of the latest full blood test results to see how the rest is doing. But it’s concerning that, despite apparently not having leukaemia cells any more, his bloods aren’t recovering.
Thanks in advance for any experiences you can share.
Hi @Ilona a great big welcome to our forum and just from your post I can tell how much you care for your Dad.
He and you have had a lot going on this year so if you are anything like me then you must be exhausted.
I hope someone will be able to share their experiences here.
If you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Perhaps the queries you have he or you might ask his medical team and discuss the way forward.
You illustrate what complex beings we are.
Really look after yourselves and be kind to yourselves and please keep posting
Thank you so much for your reply Erica. I’ve been reading the forums for a while before posting myself and you are always there with a kind, helpful word.
It’s funny, I’ve worked in the charity sector for 12 years but this is the first time I’ve really been on the receiving end of a service. If nothing else it has renewed my passion for my career as a fundraiser.
I will probably give the support line a call one day this week.
Some weeks I forget this is all going on as everything seems “normal” and other weeks it all feels too real. As an only child of parents who had me later in life (I’m 37), I’ve always thought about something like this happening, but it doesn’t make it any easier when it does. I at least have the support of a great partner and good friends (some of whom have been through this themselves).
Hi @Ilona yes, please do give the support line a ring I have found them all lovely.
It certainly is an emotional rollercoaster of thoughts and emotions
The support of a great partner and good friends is absolutely priceless.
Thank you so much for posting and telling us about your Dad. It does seem like he is doing well and it is not unusual to increase the time between treatments to allow for blood count recovery. Really great news that he has responded to the treatment on evaluation of his bone marrow. I can appreciate your concern in regards to the platelet count. Often the Venetoclax can be very harsh on the blood counts, this could be the reason but of course the combination of the Venetoclax and Azacitidine does lead to better responses. Sometimes when we are older in years, the blood count regeneration can be slower. May I ask whether your Dad’s platelets are increasing at all? I would expect this for the treatment team to re-start the next cycle. As you mentioned, asking for the blood counts and an explanation from your Dad’s Clinical Nurse Specialist or Consultant would be really useful.
If you do want to talk this through, please do get in touch as we would be happy to listen.
Thank you for your reply. Dad was due to start round 6 of Azacitidine and Venetoclax today, but on going to the hospital they told him his platelets are still down at 1, despite a transfusion on Saturday. So it has been delayed (I’m not sure when to yet, I suspect another week). So they aren’t increasing yet.
He’s going to give the clinical nurse specialist a call and see what they say.
It really sucks that our bodies malfunction like this doesn’t it?!
Thanks for the update @Ilona and am really glad your Dad is calling his CNS. As you say, another week delay is likely. Platelets that were transfused on Saturday would likely be on their way down around day 3 or 4 so worth a discussion. Is Dad getting any bleeding or bruising at all?
You are right about the human body, it is a shame when Dad is responding so well that there is an aspect preventing the treatment going ahead on time. Hope that the bloods regenerate soon.
He has little blood spots on his legs that he’s had pretty much since being diagnosed, even when his platelet count was up.
But no bleeding or bruising otherwise.
He’s going to have blood and platelets transfusion tomorrow and then go from there.
Hi I am 66 and was diagnosed in November last year with Acute myeloid leukaemia (AML) an I am on the aza & venitoclax treatment. My blood numbers were terrible I only got down to 14 on the platelets and with the low white count my immune system wasn’t working so I too got multiple infections. I am now on my 5th cycle and things are settling down. We are all different and we react to the drugs in different ways and it takes a while till the medics get the dose and time interval sorted. I am now feeling much better and all I can say to your dad is stick with it, engage with your clinical team and trust them. Good luck
Thanks so much for your reply. I’m sorry you’re going through this too, but it’s nice to know dad is not alone. I’m really glad to hear you’re feeling much better now. Hopefully they’ll get the balance right for dad soon.
Take care and I hope you continue to get better.
Just thought I’d give an update on dad.
He has started round 6 of his Azacitidine and Venetoclax now. He had a blood test on Friday and another yesterday which I haven’t managed to get the results of (he always feels like he’s troubling the nurses when he asks for them) but the fact that they’ve let him start this cycle of treatment means they must be at least in double figures again, as that seems to be the rule. He did have another platelet and blood transfusion today though.
The good news is his white blood cells seem to be back up in the normal range again. He has been given injections to encourage this and they seem to be working. So keeping everything crossed that this continues and the platelets and reds catch up too.
Hi @Ilona oh, how lovely that your dad not wanting to trouble the nurses.
He seems to be doing well.
How are you doing and feeling?
Everything crossed for you both.
Be kind to yourselves
Hi llona , sorry to hear about your Dad . I’m in the same boat as you , only child , my Mum was 42 and Dad 40 when they had me . Dad is 85 now and was diagnosed with Myeloma at 80 , Mum passed in 2019 not wanting to be a burden to my Dad as he looked after her due to her mobility and health problems . It’s really tough taking care of a parent when the roles reverse .
Hi @Anne-Marie you are so right that role reversal is so hard on everyone and I felt but this is so not right, I want someone to look after me.
Let alone looking after, but not being able to make your loved one do what you feel is best for them sometimes.
Have you got any support?
We are here for you and so is the Blood Cancer UK support line on 0808 2080 888.
Try and look after yourself as well as you look after you Dad.
Sorry for the slow reply. On top of everything I started a new job a couple of months ago, and it is great, but very busy. I’m doing ok though thank you. I have my moments when I feel mum and dad have been robbed of good remaining years together, but then I try to remind myself of what a good life they’ve had really.
it’s been really interesting seeing dad look at things in life differently. He’s been a property owner and developer all my life. But yesterday he suddenly came out with “I’ve realised I don’t think it is right that people own multiple properties”. Which is something I’ve always said. He’s definitely looking at the world differently.
@Anne-Marie I’m really sorry to hear about your mum and your dad. The role reversal really is hard. And even when you might have known it was inevitable, it doesn’t make it any easier. Personally I’m trying to find that balance between caring for them but also still living my own life, both for my own sanity, but also because you never know what might happen to you.
The frustrating thing at the moment is the administration of the NHS. Dad was given the dates for his next round of chemotherapy but I took one look at them and knew they were wrong. Another day he spent 10 hours in hospital just because someone had thought his chemotherapy was by drip not injection, so hadn’t ordered the blood for his transfusion. Usually transfusion days take 4 hours or so, but 10 was ridiculous. It’s the first time I’ve ever seen my dad talking about his mental health. And while I’m grateful he is talking about it, it’s still hard to see.
Anyway, we take it a day at a time. My challenge is trying to find little things for him to enjoy in life.
Hi @Ilona and thanks for taking the time to update us on how things are.
It sounds like things are so busy - it must be hard to balance it all. However, as I read your post I liked how you are trying to manage this and take care of yourself, as well as your dad. It can be hard for the people around us and can take its toll.
It’s funny how an illness can make us look at life differently . I know I made some really positive changes.
It must have been really hard hearing your dad talk about his mental health. The journey is hard enough without long waits and wrong appointments. He is really lucky to have you to help him through.
Please take good care of yourself and sending love to your family X
How are you doing @Ilona?
Well dad has just messaged me to say he’s back in A&E with a high temperature. It seems to be fluctuating just above and just below the upper limit for normal so I’m hoping he won’t have to stay in this time. They’re taking it every half hour to see how it goes.
His blood counts just don’t seem to be recovering between treatments at all, which is concerning.
We have a meeting with the consultant next Wednesday.
I just want to hug him and make it all go away for him.
Oh and just to add to this, my cousin messaged me today to say his mother in law has been diagnosed with Myeloma. So that’s been a bit of a shock today too.
@Ilona what a day you have had you are obviously very worried about your dad and then the shock about your cousins mother in law’s being diagnosed with Myeloma.
Be ever so kind to yourself it is a lot to take on board.
Please keep us updated