Myelofibrosis and platelets

[ardpatrick]

Hi my husband has has MF for nearly seven years now, on transfusions 3 units every 2 weeks. His platelet level has slowly gone down and is now at 12 does anyone else have this problem.

[jane13]

Hi, I have MF and my platelets go low but 47 the worst so far. Sorry this is no help. What problems does yr husband have with such a low count?

[ardpatrick in reply to jane13]

Hi Jane he is very breathless but still gets out to potter in the garden, he has to be careful not to cut himself and bruises very easily, do you have to have blood transfusions regularly to keep your red and white cells up.

[jane13 in reply to ardpatrick]

no, not at the moment as i have recently started on ruxolutinib which has done wonders: platelets are the only problem currently. Ruxo has also reduced my spleen which was enormous so has taken out some of the complication risk associated with that. Long may it last....

Good luck, looking forward to summer in the garden myself

[beetle]

Yes, my platelets go up and down but always below 100. Lowest was 29. One haematologist told me not to worry if above 50 so 12 seems a bit low. Presumably your haematologist is keeping an eye on things. Ask him/ her about it. At least it will flag it up and maybe give you some reassurance or they might take some remedial action. I'm a great one for asking questions every time I go for appointment. Phone them if you are concerned. I go with a list to each appointment

Best wishes, Jan

[ardpatrick in reply to beetle]

Hi Jan he has had one platelet transfusion before having a teeth removed, he has been offered platelet transfusions however it would mean a whole day per week In hospital. He just struggles with breathlessness but still loves his garden.

[ardpatrick in reply to beetle]

Hi he has to see his specialist next month we see her every three months and she is always available to speak on the phone. We live in the west of Scotland so we rely on our local wee hospital, which I must say is very good. Thanks

[beetle in reply to ardpatrick]

I have just moved from the west of Scotland to Devon! We lived at the top of a glen and there was no point in gardening as the dear ate everything!! Your consultant wouldn't be Dr Clarke by any chance? I am glad you feel looked after anyway

[beetle in reply to beetle]

That should have said 'deer'! I think it auto corrected for me!

[ardpatrick]

Thanks for that yes Dr Clark is our consultant, however she is retiring soon she will be missed.

[beetle in reply to ardpatrick]

I'm afraid she has already retired. She will be sorely missed by all who knew her. Even after I moved she emailed me to see how I was getting on. She was a very caring doctor. Whoever takes her place will have a tough act to follow

Best wishes, Jan