MF and platelet transfusions

[dnsn]

Hi there,

I’ve been reading posts on this forum for a little while but am posting for the first time.

My father, who is in his late 70s, was diagnosed with MF a couple years ago (after 15 years or so with PV). He has been on Rux for a couple years and it has had a wonderful effect at suppressing symptoms and providing a good quality of life. A few months ago it ceased being as effective as his blood test results worsened and he is now on a combination of Rux and (the steroid) prednisolone.

As of a couple weeks ago, this combination no longer stabilised his blood levels and he has just had his second platelet transfusion. When he went to the hospital for it today his platelets were 3 x 10^9/L. He will be on weekly platelet transfusions from now on.

Fortunately, his symptoms have been mild / controlled by the ruxolitinib - he is not in pain and sleeps and eats well although he is fatigued. Just recently, as his platelets have got very low, he has lots of bleeding under the skin all over his legs, arms and abdomen and bruises and bleeds easily.

His most recent blood test results were:

Platelets 3x10^9/L

White blood cells 250

Haemoglobin 116

I’m wondering whether the transfusions will allow my dad’s condition to be stabilised for a while or whether it will only help for a very short time before things get worse again? I would love to hear peoples’ thoughts and experiences with platelet transfusions.

This time, right at the same time that he was receiving the platelet transfusion he had a throbbing pain in the bone in his hip. It stopped after the first 10 minutes or so. Has anyone else experienced this? He has only had bone pain once before in that hip for a brief time.

Also, he is (understandably) worried about going to hospital weekly (for day visits in Bristol, UK) with the current covid situation. Are others still going to hospitals for transfusions or have been going throughout the pandemic?

Finally, does anyone receive transfusions at home? That is not an option for him via the NHS but perhaps privately? That would seem so much more comfortable and also lower covid risk.

Thank you so much for any thoughts you may have and also for your previous posting which has been a great help to me and my family navigating our way through this.

[beetle]

Hi. I have blood transfusions every 3 weeks and have had right through the coronavirus crisis. I am fortunate in going to a small hospital with only up to three other patients in at one time and we are masked and separated. Also most of the other patients are shielding like me. I have also been to a much larger unit but I felt the covid secure measures there were as good as can be. It is a question of balancing risk isn’t it? Even if you are able to secure transfusions at home there is still a stranger coming into your home. There is no 100% guarantee but I’m sure hospital units are doing as much as they can to keep us safe. Best wishes, Jan

[dnsn in reply to beetle]

Hi Jan, Thanks for your reply and I'm glad to hear your care has continued uninterrupted through the pandemic and that it was conducted as safe as possible. You're absolutely right that it is a balance of risks and that's a good point about home transfusions meaning a stranger in the home which has it's own risks.

Thanks again and all the best, Dan

[MichaelS]

Hello Dan, I live in Bristol and usually go to haemotology once every 3 months. In about 2010 I changed from PV to MF and in 2013 the hydroxycarbamide was changed to Ruxolitinib at 15mg x pd. After a fortnight I had the follow up test and was told to come off all the blood related drugs because my platelets had dropped to 66 from 250. I had been on Hydroxy' since 1983! It worked and the platelets returned to more normal levels. After a pause in medication of a month I was put back on the Rux but with a dose of 10mg x 2pd and everything is now steady. That was the only time needed a transfusion.

I don't know what dose your father is taking but it may be good to reduce it as it worked well for me.

Best wishes to you and all readers

Michael

[dnsn in reply to MichaelS]

Hi Michael,Thanks for your reply and I'm very glad to hear that you are steady and stable. Also great to hear from someone else in Bristol - my dad has received excellent care from the team at BRI (Dr Hodby, Dr Bird, etc.) as well as his GP.

Unfortunately, when they tried taking him off Rux late last year (because they were worried about a platelet di), things really deteriorated quickly (his wbc count shooting up exponentially, much more challenging fatigue, etc) and only putting him back on it (with prednisolone added) stabilised him. I can't remember what dose of Rux he's on right now but I know they have tried fine tuning the amount.

Thanks so much and best wishes,

Dan

[MichaelS in reply to dnsn]

I hope that the problems with your father's blood get resolved soon. I think your father must live south of the river if he is based at the BRI. I live in Fishponds and go to Southmead, and my consultant is Dr. Alastair Whiteway who sometimes works at the BRI. Best wishes