Hello. My Dad had Myelodysplastic syndrome (MDS) and was very recently hospitalised following a cold that he couldn’t shift and a total nosedive in his energy levels. A bone marrow biopsy has shown that he has now tipped over into Acute myeloid leukaemia (AML) along with developing a lung infection - he is currently using an oxygen mask but breathing is difficult and they’re trying different antibiotics to try and tackle it.
We found out today that they’re going to start him on hydroxycarbamide to try and get his white blood cells under control before progressing to venetoclax and cytarabine. Has anyone else got experience of a similar situation? We’re obviously terribly worried. He is exhausted just moving from the bed to a chair and we’re struggling to get him to eat anything more than the odd mouthful.
I’m sorry to hear about what sounds like an incredibly tough time for your dad, and for those of you supporting him. A sudden change from Myelodysplastic syndrome (Myelodysplastic syndrome (MDS)) to Acute myeloid leukaemia (Acute myeloid leukaemia (AML)), a lung infection, and the hospital admission is a huge amount for anyone to cope with, and it’s completely understandable if you’re feeling the weight of that worry.
Other forum community members here have certainly been through or are going through similarly complex situations, and may want to share their experiences with you, even if they’re not exactly the same.
In the meantime, I wanted to link you to a couple of pages that might be helpful, though I can see from your post history that you may already be familiar with some of this:
Beyond the forum, you’re always welcome to call our Support Line on 0808 2080 888 or email support@bloodcancer.org.uk if you’d like to talk things through with one of our nurses.
Please do keep posting if it helps, even if it’s just to say how things are feeling day to day.
Take care,
Ceri - Blood Cancer UK Support Services Team
I’m sorry to hear your dad is feeling so poorly. It must be really tough for you all at the moment.
I hope it helps sharing on the forum. I know there will be others who will be able to relate to how difficult it is looking after a family member going through this. .
Thanks so much Nichola and Ceri, your replies are really helpful. Dad is now on the hydroxycarbamide and they’ve been able to reduce the amount of oxygen he’s on. The plan is that, hopefully, on Monday he’ll be to start on Venetoclax and Cytarabine. His energy levels are still incredibly low and he has no appetite so we’re struggling to get him to eat more than a few mouthfuls of anything. He’s experiencing quite a few of the side effects from the hydroxycarbamide and this is taking its toll too. I guess we just take it one day at a time.
Hi @beck, thanks for letting us know how things are going. I’m glad there’s been a step forward with the oxygen, though everything else you describe still sounds hard for him all of you supporting him through it.
Day by day is more than enough right now, that’s for sure. We’re always here if you need us.
Thank you, Ceri. The Venetoclax/Cytarabine has currently been paused as they try to manage the lung infection. Multiple types of antibiotics and anti-fungals have been tried. Today they removed some fluid from his lungs so that they can test that. Dad is now constantly on an oxygen mask at max strength as he struggles to maintain his blood oxygen saturation without it. He’s very weak and is now asleep / dozing for the vast majority of the day. It’s hard to know what’s ahead and if we’re going to be able to turn this around somehow. I really appreciate this forum and hope that these posts may be helpful to someone one day.
My lovely Dad died today. It is unimaginably sad. I’ve appreciated being able to share our experience with blood cancer here and learn from what others have gone through. I don’t really have any words of wisdom except to say that the desperation for one more minute with your loved one kicks in almost immediately, so if you are in a position where you can have more minutes I hope you are able to treasure them.
@beck my every sympathy to you and your loved ones. Having lost my dad in the last 2yrs, I can empathise with your words of wisdom about one more minute. Id still give the world for one more with him. I will be thinking of you all and hope, in times to come, you can look back and see the great support you were to him. Be ever so kind to yourself, these will feel like the darkest of days x
Oh @beck, I’m so sorry to hear about the devastating loss of your Dad.
This must all be unbearably raw right now, and I’m grateful you felt able to come here and say anything at all. You absolutely don’t owe anyone words of wisdom, but somehow you’ve still managed to say something so important and true.
I hope you’ve got people around you who can be close and take some of the weight off your shoulders in the days ahead. We in the Forum community are here whenever you want to talk or simply check in, and the Blood Cancer UK Support Line is there for you too on 0808 2080 888.
Oh @beck I just do not know what to say, I am not surprised that you are feeling unimaginably sad. I can see from your posts how much your lovely dad was loved.
As @judesadventures says be ever so kind to yourself, grief is completely individual, there is no wrong or right way to grieve. As @Ceri_BloodCancerUK please contact the Blood Cancer UK support line if you would like to, they are all lovely.
Yes, we are a support forum and I hope you feel the love and support engulfing you.
We are so sorry to hear about the loss of your Dad.
We can imagine this is a devastating time for you and all of your family.
Our thoughts are with you at this time. We hope you have support around you from loved ones and please know that you can get in touch with one of our support services nurses on 0808 2080 888, should you wish to talk.
