My 83yo father has been diagnosed with leukemia. Unfortunately I didn’t attend the appointments with him, he kept it a secret until the diagnosis. I do know it’s a result of MDS and he started chemo yesterday - azacitidine. From the research I have found the prognosis for him is about 12 months. Is anyone able to share any more info for me please.
1 Like
Hello Carello - just wanted to send you care for your situation with dad and feel for you - there will be plenty that will be able to help here with experience of your particular situation (which is different to my own blood cancer situation) but just wanted to say welcome to this supportive site and send thoughts to you
3 Likes
Thank you so much for your kind words and I hope you are doing okay.
1 Like
Hi @Carello welcome to our forum and firstly beware of Google and stick to reliable websites like this one.
I was diagnosed 17 yrs ago with leukaemia and read somewhere that I had a 5-10yr like expectancy and I am still here. Also treatments are coming on leaps and bounds thanks to the research funded by Blood Cancer UK and others.
You must be in complete shock, as must be your dad, and that might bring a whole load of emotions, thoughts and practicalities.
It sounds as if your dad is quite independent, but he might give the hospital his permission for them to talk to you, if you are his main relative or carer(I don’t know about going to appointments with him currently in Covid times, unless you are his carer)
Have you any support from family and friends?
However we are here to support you now and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk
Take lots of special care of yourselves and spoil yourselves. Keep posting.
2 Likes
Hi @Carello. I hope you and your dad are doing ok. Did you find out any more information to help you support him? It’s really hard when you don’t have the full picture x
2 Likes
Hi @Nichola75 , yes I have a better understanding of what’s going on, but it’s not a great prognosis unfortunately.
1 Like
Thinking off you - please take care.
2 Likes
Hi @Carello, we are here for you so you can say how you are really feeling and thinking.
Please let us know what support you both have and more about you both.
Take lots of care and spoil yourselves.
2 Likes
So very sorry to hear this @Carello, this must be so hard and such a shock. What information might be useful for you? In case it’s helpful, Macmillan has information on the drug Azacitidine here - Azacitidine (Vidaza®) - Macmillan Cancer Support
This page might be useful for you to read through - Someone I know has blood cancer | Blood Cancer UK as well as this one too https://bloodcancer.org.uk/support-for-you/living-well/mind-emotions/ and please remember that we’re only at the end of the phone (As Erica says above) if you might find it helpful to talk things through with us?
2 Likes
Hi @Carello,
I’m sorry to hear about your dad. I am in exactly the same position as you - my father is the same age and has AML. He was diagnosed a few months ago & is being given treatment - although it’s not a cure.
If you think it might be helpful to share experiences and advice, then please message me. I appreciate it’s a very difficult time and you posted a while ago.
Take care.
3 Likes
Hi @thefairies a great big welcome and you have already found the benefit of our supportive forum.
You must also be going through a very fearful, anxious time with your dad and you cannot do anything to make things better.
Do you have any support from family and friends?
We are here for you as a place where you can be really honest about how you are feeling and doing. The Blood Cancer UK support line is also there for you if you would like to talk to someone.
I really look forward to hearing more from you.
Please also try and look after yourself as you must be physically, emotionally and practically exhausted.
1 Like
Hello, my Dad was also diagnosed with AML a few months ago. He had one round of Chemo (not the aggressive one) but sadly it didn’t work. He was sent home three weeks ago and told he only has a few months to live. It’s just the pits!!! I love my Dad to bits and hate that he has to go through this. Would love to hear from anyone that has been through or is going through this. Sending love to you all x
4 Likes
Hi @julie26. What a sad situation you all find yourself in and I’m sorry you are all having to go through this. Sometimes things just feel so unfair don’t they.
How are you, your dad and your family managing at the moment? I can only imagine how difficult it must be.
Have you been given lots of support from the medical team now your dad is at home.
This forum is so great for sharing experiences and we are all here to support you. Remember the support line is also there if you need it.
Please take care of yourself as well as your dad. Sending lots of love your way X
1 Like
Thank you for you kind words it means a lot. Dad is doing well but is a different person. Much weaker and less able to do things. His garden is his passion but he won’t ever have the strength to be gardening again. He has a blood transfusion once a week and platelets twice a week. His platelet levels are VERY low. Mum is doing her best and St Margarets Hospice have reached out to her to offer support.
It does feel a bit like Dad has been discharged and he’s off of the radar now. I have been speaking to my Mum about getting Dad a care plan written out with the GP or whoever else could help? That way we will all know Dad’s wishes in terms of care going forward.
It’s so hard…I hate knowing my Dad is sick and nothing can be done. I dread to think what goes through his mind? He’s a quiet guy that never asks for anything.
I have two sisters and a brother so we are all able to visit. I hope we can give Dad a good quality of life for as long as possible. He has lost another 5lbs this week and is starting to look different which is sad.
xx
1 Like
Hi @julie26.
It sounds like you have an amazing family who can support each other and your dad. It must be hard for him not being able to do the things he loves. All you can do is be there to support him. How would he respond if you asked him how he was feeling? What about your mum and you. Are you able to talk openly?
I would definitely accept the support of the hospice. I’m sure there support would be invaluable. It might be worth giving McMillan a call as well.
I’m not sure what support you are entitled to and what his team should be offering.
I’d suggest giving the support line a call tomorrow. Here is the link: Blood cancer information and support by phone and email | Blood Cancer UK
They will be able to point you in the right direction so you know where to start.
Please let me know how you get on x
1 Like
Hi @julie26 I am so glad that you have found us, I cannot imagine what you are going through.
It sounds as if you can talk honestly with your mum, but with your dad being a quiet guy that never asks for anything perhaps it is more difficult.
Perhaps you, your mum and your siblings might have to open up the conversation between you and then ask your dad how he is feeling and thinking.
Perhaps this is the time to make some lovely memories all together.
A care plan sounds a great idea.
@Nichola75 has given you good thoughts and I have heard that Macmillan can be very helpful for all of you.
You now also have us to support you and the Blood Cancer UK support line to give you a place where you can honestly say how it is to be you.
Look after yourself you are going through so much at the moment.
1 Like
@julie26 Hey Julie, I’ve recently gone through the Acute Myeloid Leukaemia journey with my mum. She was diagnosed last September and sadly passed away in August, 11 months after diagnosis.my mum had an expression of wish form from the hospital. The hospital sorted out getting mum on the district & pallative care books in the community. They are an amazing team and looked after mum so well in her final week. She passed away at home with us 4 kids by her side, just as she wanted. Sending you so much Love, stay strong
1 Like
Hi @Wendle thanks for posting, I know that it is very early days but how are you doing?
Look after yourself.
@Erica i have good and bad days. Its all so very raw still. You only truly understand leaukemia when you have experienced it for yourself and see the devastating effects it has on a person and their families.
1 Like
Look after yourself @Wendle, leukaemia can be so devastating, cruel and not fair.
Please keep posting and this forum and the Blood Cancer UK support line are always there for you.
1 Like