Hi all. Looking for advice on Acute Myeloid Leukaemia chemo regimes that aren’t too harsh.
My father was diagnosed with Acute Myeloid Leukaemia last Thursday. He went into hospital for a transfusion on Saturday but they found he had an infection, so he’s stayed in to get antibiotics and have transfusions, whilst being monitored. It sounds like he will be let home on Friday.
He’s 90 years old but quite physically and mentally tough in his own way. In fact, the doctors think he may have been living with Acute Myeloid Leukaemia for a couple of years before diagnosis. My father’s philosophy is that he’s had a ‘good innings’, so he’s not inclined to have chemo. My sister and I would like him to be more open minded, in case we can extend his life a bit longer so we can all enjoy him a little longer. Plus, it will give us all more time to make plans for how we care for my mother when she becomes a widow: my mother is 88 and just starting to get dementia, and both parents live a little way away from our family, so it’s hard to keep an eye on them.
My sister and I are trying to find out is how quickly my father’s health may deteriorate. How long will blood transfusions help top him up, and is there a chemotherapy pill treatment that he can take to extend his lifetime without too many side effects?
I myself have just finished intensive treatment for breast cancer during 2022, and I was lucky to not have too many side effects from the chemo, but the chemo did really knock back my red and white blood cells. Would that be the same for Acute Myeloid Leukaemia treatment, given that my father’s blood cells are already very low due to the leukaemia?
You’ve had a tough time yourself by the sounds of things. I hope your recovery from Breast Cancer is going well?
I’m really sorry to hear about your father’s recent diagnosis. I’d discuss the treatment options with the Consultant who I’m sure will be able to provide a good overview of options under the circumstances. In addition @BloodCancerUK_Nurses may be able to provide some information for you and your family to assist.
Hopefully this is helpful. Please do update us as to how he is doing.
Hi @DebMcD a great big welcome and I am so glad that you have found us so quickly.
Personally having a blood cancer myself means that when others, especially my nearest and dearest, gets a cancer diagnosis it really hits me to the core.
With you just finishing chemo and suffering it’s side effects, I expect it has been very hard for you.
For your dad it must be a hard decision to weigh up carrying on with or without treatment.
Would your dad allow you or your sister to go to his next appointment and ask questions?
The really hard parts for you and your sister seem your powerlessness to his ultimate decision, your concerns for your parents living a way away, your mothers health, and you having your own family, but with more questioning and answers from your dads consultant it might just open his mind.
Perhaps write down everything you and your sister would like to know in preparation.
I am concerned for you all, but especially you as you have been through so much yourself and need to really look after yourself. @NickB has given you a brilliant response.
Please let us know how you all get on and be kind to yourselves.
Thanks Erica. We had no idea he was so ill and my mum forgot to tell us about my dad’s appointment to get his bone marrow results back, so we are playing catch up. His consultant is away on holiday for 2 weeks, but hopefully my dad will see someone again soon about next steps and treatment options. My sister or myself will definitely try to attend with my parents.
I don’t want my dad to be suffering side effects for the remaining months of his life, nor stuck in hospital whilst he gets infusions. That wouldn’t allow him to enjoy the time he has left. It would be lovely though if he could have another xmas: it doesn’t sound like that’s likely if he doesn’t try any treatment. He’s a grandfather too, and a very special person, so he will be greatly missed when he does pass away.
Is there a milder chemo pill or immunotherapy that he could take to extend his life so that he would make it to xmas in a comfortable way?
Hi @DebMcD you ask about milder treatment options and that really is a question for his medical team that take so many different considerations into account for each individual.
Please let us know how you get on and really look after yourselves
Hi @DebMcD,
A very warm welcome to our forum. It sounds like you have all been through so much of late and i do hope you are coping okay?
I appreciate that lots of uncertainty must be attached to your dear dad’s diagnosis & understand that this must be such a difficult time for you & your family.
As you have rightly mentioned the decision to embark on treatment is such a difficult and personal one. The treatment options will however ultimately be led and advised by his haematology team where they will take into account many factors including your dads age, current & previous health, risk of treatment and indeed disease. It is also often that newer patients care will be discussed at Multi- disciplinary meetings allowing other specialists to input into your dads case.
As you have suggested and are if you’re able- attending the next appointment or even requesting a call from your dad’s team, with his consent may be helpful. It might allow for you to both to have a clear pathway and understanding of what the next steps are but also allow you to raise any concerns or questions you may have about potential treatment options.
May i ask if your dad has yet been given contact details for a nurse specialist within his haematology team? If not this is something to bear in mind as the cns team can be such a valuable source of contact for your family & your dad.
Hi Erica, unfortunately my dad died on Sunday night, which was quite a shock, as it was only 4 weeks from when he was first diagnosed. We really didn’t think we’d lose him so quickly, as he wasn’t frail. But his body just failed him, despite platelet transfusions.
I am very grateful for, and impressed by all the support received from yourselves since I made contact with you. It is very much appreciated and I do hope that others have a better outcome than my father did.
@DebMcD I am truly sorry to hear this. Please do get in touch if there is anything we can do to support you and your family. We’re only a phone call or an email away.
Oh @DebMcD I am so sorry that you lost your dad on Sunday night, what a great shock for you. Thanks so much for letting us know.
Please don’t forget the Blood Cancer UK support line if you would like to talk to someone on 0808 2080 888 and your forum family are also here for you.
Give yourself time, there is no right or wrong way to feel or be and be ever so kind to yourself