First time posting and not an easy one I’m afraid.
My Dad was diagnosed with Myeloproliferative neoplasms (MPN)/Myelodysplastic syndrome (MDS) overlap and JAK2 18 months ago.
He’s 84 years old and over this time he’s gradually deteriorated getting more fatigued and his mobility getting worse.
He was having monthly transfusions ( with little effect) and weekly Retacrit injections.
He was taken into hospital early December due to being so weak and 7 weeks on he’s still there. He’s had 3 transfusions since being in there and still no improvement.
The doctors have come round today and said they can’t do anything more for him as nothing is helping him.
Mentally he’s fine, but his body has given up.
My question is, what will happen without any treatment?
His hemoglobin levels were at 72 before his transfusion brought it up to 90.
He sleeps most of the time and says he’s not in pain ( other than pain from being in bed practically non stop for 7 weeks).
Will he just get more tired and fall asleep?
If anyone can offer any insight (I appreciate everyone’s different) and how long he could survive without treatment.
I just don’t want him to suffer too much in his final days.
Thank you so much for reading.
Dear @Woodyt , I’m so very sorry to hear about your Dads situation. Our thoughts are with you during this difficult time. Feel free to share your thoughts, or any support you might need. All of the forum team are here for you.
If you or anyone else in your family needs additional support or resources, you might want to think about contacting a local hospice. There is a part of the forum that might help you
Please do know that if you wish to talk anything through our helpline is always here for you- Blood cancer information and support by phone and email:
0808 2080 888.
Remember, you’re not alone.
@Woodyt I am so glad that you have found us, thanks so much for taking the time and courage to write your post.
You are obviously so caring and I think it is so hard when you just cannot make your loved one better.
Perhaps your questions, what happens next and fears are best asked of your dad’s medical team as the know his whole medical history, but as you realise everyone is so very individual.
If you feel you need support it might be worth checking out the hospitals services or ask your GP surgery for local services.
You must be going through such a difficult time emotionally, psychologically, physically and practically, I expect you are exhausted.
The important thing is that you look after yourself as well as you look after your dad.
We are here for you and please do keep posting.
Hi @Woodyt and welcome to the forum.
That must have been a really difficult post to write.
I can see @Jules and @Woodyt have given great replies and contact details of the support line.
It’s so hard to hear the news you have. Will you get an opportunity to ask your dad’s medical team all of the questions you have? X
Many thanks for the kind words and the offer of support. It’s much appreciated.
I’m hoping to find out more tomorrow and hopefully will have some answers.
Hi @Woodyt I will be thinking of you all tomorrow and please do let us know how you get on. xx
Be thinking of you tomorrow x
Thanks for all your support. Dad has been given a prognosis of about a month which I guess was less than I expected. The doctor I saw didn’t have the best ‘bed time manner ‘which didn’t help with the whole situation!
Dad’s 90 year old brother is coming to see him tomorrow for what I guess will be the last time.
God this is hard
I am so so sorry to hear this news. It’s must be such a difficult time for you and I have no words.
You know where we all are if you need us. You will both be in my thoughts X
I saw the doctor today with Dad and she said his prognosis was about a month…
Unfortunately, I wasn’t impressed with her bedside manner and the fact that she sneered at the bottle of lucozade on his table as if to say that’s not going to do him any good! Sorry, but if that’s what he wants in his last days, that’s what he’s going to get- along with his mint imperials!!!
This is so hard!
Oh, @Woodyt there is nothing I can say, but yhat you really are in our thoughts at this difficult time.
Will be thinking of you even more today with your dads brothers visit.
This is a non medical response, but perhaps why not let your dad do and eat whatever he wants.
The Blood Cancer UK support line is there for you on 0808 2080 888
Sending loving vibes to you both, keep posting.xx
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These are very precious moments with dad now
Ignore the looks and snears but I understand that your feeling all sorts of emotions right now, cross, angry, sad, etc all normal reactions
What matters now is that you have all the conversations with dad that are important and he eats and drinks whatever he wants and that he is as comfortable as he can be.
Spend quality time with him love him.
I was with my FIL when he passed from cancer
He drifted in and out of sleep some days awake more than others, started eating less and drinking less and sleeping more
His final moments he just drifted into sleep no pain no noise just quietly peaceful.
Thinking of you all and that your dad enjoys his brothers company.
Hi there, didn’t want to read and run. I spent my dad’s last weeks and days by his side and it was the greatest privilege of my life. Nothing was left unsaid and he left this life surrounded in love and in peace. I wish comfort, and moments of love and joy for you and he and those who love him. My best wishes
If your Dad wants lucozade or whiskey or quite frankly any other substance known to man I’m very sure you would make it happen right now.
If your Dad wants jelly with cheese or chocolate with gravy my answer would be who cares he can have whatever he wants. I say this all the time to my father in law who is 85. Enjoy what ever you want as my mother in restricts his chip and butter intake just because he’s getting fat ! Who cares at 85!
Treat your Dad to anything that brings comfort and happiness and look after yourself along the way too. Thinking of you both
Thanks Jules, that made me laugh x
Totally agree with everybody’s comments! Definitely what he fancies X
Hi Woody. So sorry to hear about your family’s situation. I 100% agree with everyone else. What he wants , give him. Sometimes these doctors really infuriate you. It would be different if they were in your position Try to keep your pecker up. I know it is hard
I have been thinking of you and your Dad lots hope you are ok.
That’s very kind of you and I’ve been meaning to give an update.
Dad was moved to an excellent nursing home ( which initially he hated!) mainly due to the ‘Mastercheffy’ food but with a few tweaks ie taking his own Tv in with all the sports channels, he’s warmed to the place .
In the early hours of Thursday morning I had a call from the home saying that they thought Dad was having a heart attack, paramedics were there and wanted to take him to hospital. I spoke to him and he said he wanted to go to hospital so off he went.
72 hours on, he’s fine. They gave him a blood transfusion ( contradicting the other hospital he was in) and aspirin for the heart attack.
He’s back at his nursing home now, so he’s certainly not going anywhere just yet
Great to get an update and I’m glad to hear things are a little more stable and that he is comfortable where he is.
How are you doing?