Hi Everyone, so my father was officially diagnosed with Acute myeloid leukaemia (AML) on 31st August. Unfortunately he also has dementia and as a result the consultants have agreed that he wouldnt react well to chemo and the Acute myeloid leukaemia (AML) will be left untreated. So its a case of just managing my dads symptoms.
Life is tough at the moment because of paranoia brought on by the dementia. However, my dad who is 72 is really physically fit and you wouldnt know he had Leukemia. He has no signs or symptoms. I suppose im here to manage my expectations for what to expect in the near future. We are approaching 3 months since diagnosis, and although my dad has no visible signs of the illness I know this could change quite quickly. Does anyone have similar experience of Acute myeloid leukaemia (AML) being left to run its course? And what the typical life expectancy looks like.
Dear @Jrowan23
Thank you so much for posting and welcome to the forum.
I am so very sorry to hear that your Father has Acute myeloid leukaemia (AML) alongside his diagnosis of dementia. It must be so upsetting to see this happening with very little control.
May I ask whether your Father is having regular blood tests, transfusions and medical reviews from the Haematology team? I would expect this to be happening so that his blood counts can be supported if needed? Does your Father have a Clinical Nurse Specialist that you can call for support and to escalate any symptoms?
It is good to hear that there are no obvious signs of the Acute myeloid leukaemia (AML) at this point in time. As you mentioned, this type of leukaemia can progress rapidly but you do tend to get some warning around this within the blood count evaluation? Have you been able to ask the Haematology Consultants about time scales? Whilst the doctors can not be totally accurate regarding life expectancy they can relay their thoughts taking into account your Father’s blood counts, the genetics of the Acute myeloid leukaemia (AML) and his general health.
I am sorry that I cannot be more precise for you. If you would like to talk to us we would be very happy to support you: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
Oh @Jrowan23 I am so glad that you have found us.
@GemmaBloodCancerUK has given you a response I cannot better.
It must be such a very difficult time for you and as you say tough.
We are all very unique, special people with our own complex medical histories so only our medical teams can really answer medical questions.
Perhaps just enjoy yourselves and, I know this is so difficult, try and keep it in the day.
I find our forum is the one place where I can say how it really is for me, perhaps it might help you too and also don’t forget the Blood Cancer UK support line.
Be kind to yourself and please do keep posting
Hi @Jrowan23 and welcome to the forum.
I’m really glad you’ve found us and am sure you will find the forum a great support.
I can only imagine how hard things must be at the moment and the worry this must cause you and your family.
Please keep us updated on how you and your dad are doing and keeping posting. We are all here for you
Dementia is hard enough. And my Dad who is 84 was losing weight and sleeping a little more but we didnt think it was anything then on the 6th of March he went for his 3 month lab work as usual and within an hr received a call to come back and was sent to the ER.His bloodwork showed severe anemia and his white count very high.He received 2 units of blood and was released. I was anxious because I knew that something was seriously wrong based on his bloodwork but he has an AMAZING ONCOLOGIST and saw him a week later.He is an hour and 15 from where we live.We got there discussed his labs and was admitted that day for a bone marrow aspiration. The test was what they referred to as a dry draw.I read up on what that meant.He was released on the 16th with a Myeloproliferative neoplasms (MPN) MF diagnosis.Saw the oncologist and set a plan in motion to treat the symptoms and slow the progression as much as possible but he was looking at a year.He had labs done 2 weeks later and EVERYTHING CHANGED including his diagnosis.He has Acute myeloid leukaemia (AML) and treatment isnt going to help.I started the process of Hospice with the oncologist and tomorrow we meet the nurse who will be handling his hospice.Its extremely emotionally devastating but as his daughter I will do everything to make his last few weeks as easy as possible.My heart breaks