hi, hubby has had PV for 10 years, been on hydroxy but still had venesections every 5/6 weeks. In feb his counts went down, then again in May… knew something was happening but haemo said it’s fine. Then end of June he got suddenly more and more breathless and counts had fallen drastically. Hgb 80 platelets around 16… he’s been having double transfusions, but they only help for a few days, same with platelets now down to 12! Hgb74. Loads of other bloods are all over the place too. He now has a pleural effusion left side, but they can’t drain as platelets won’t hold. Blasts were showing in his blood at 1…now 2.. this is UK . Hydroxy was stopped over 3 weeks ago. He’s had BMB now after my begging! Waiting for results. Any advice please? I don’t think this looks very hopeful forhim. He’s 74, lying in hospital, can’t breathe, and can no longer even walk to the toilet. 😞
post PV Myelofibrosis…or?: hi, hubby has had PV... - MPN Voice
post PV Myelofibrosis…or?
so sorry to read your post & the pain for your husband.All I can say is the B M B results will let you know if he has progressed to M F . Similar to what happened to me after long time P V .I am now MF 84 yrs old & managing well enough. So wishing you Both the very best results & future treatment .
Sorry to hear about your husband's apparent progression. Please do let us know how you both get on. You will both be in thoughts and prayers.
Thanks.
So sorry, your poor husband and such a worry for you. Wishing you both the very best outcome. Please let us know how things go. 🤞🤞
Can he have a platelet transfusion to enable them to do the lung work?
He’s had several, but they don’t increase by much so they are too scared to do it. Stalemate.
that sounds horrendous is your husband under an MPN specialist?
I’ve had PV/ET for 10 years on high dose hydroxycarbamide
It’s everyone’s nightmare when things start to progress
I really hope they find a way of a positive treatment plan try and stay strong and positive
There wasn’t a specialist at our local hospital, but they have transferred him now thankfully. He’s living on protein shakes and can barely walk at all now. It’s horrendous. The first hospital tried hard to kill him I think. 😞 he’s been in new one 2 days so I’m hoping they will help him. They do have an MPN specialist.
I hate to hear that. If you don't mind sharing, could you discuss what they tried to do at the hospital? Thanks that will keep me informed of what not to let anyone do to me or anyone else. Thanks and blessings from LA,( LOWER ALABAMA)
They did nothing really, just transfusions of blood and platelets. No antibiotics even though he showed obvious infection. In new hospital they have now done more X-rays and an MRI today too. So I hope the picture is building now. 🤞 good luck 🤞
I am so sorry this has happened to your husband and I understand how worried you must be. Now that he’s under the care of an MPN specialist I hope things will improve. There are treatments which may help alleviate some of the symptoms of Myelofibrosis ( Ruxolitinib, Fedratinib…) and the specialist will no doubt make a decision based on his bone marrow biopsy and blood counts. Sending you kind thoughts.
So sorry you’re both going thru this. Please know that you’re in my thoughts and prayers.
My heart goes out to you both. Hopefully some path will emerge that gets him back on his feet. All of us on this forum will keep you and your husband in our thoughts.
Sorry to hear your husband isn't well.
My husband was diagnosed with PV at 40 he was ok just having venesections after two years he was so fatigued struggled day to day. He then had a BMB which revealed primary myelofibrosis. My husband is now 52 .
He was then changed over to ruxolitnib and I must say it's been a life changer . His spleen has reduced in size his bloods are all in range and he feels so much better.
Hopefully once your husbands BMB is back they maybe able to try him on another medication.
Take care Tracey
That gives me hope, thanks. Just wish they’d hurry up really 🤞
Maybe he needs to be on ruxolitnib. Hydroxy was brutal for my husband it made him iron deficient which it's meant to do but he could barely get through the day. He hit rock bottom soon as he stopped it and changed over to ruxolitnib the change was unbelievable. It reduces his spleen back down to normal size it had over doubled on hydroxy .
The right medication will hopefully help him .
just to let everyone know. The BMB results came back and he has leukaemia. They are putting a plan together for palliative chemo, he’s too ill to have anything else. Thanks for all your kind words. Xx
Sudden increase in platelets while on Hydroxy
Post ET MF - Advice Please
Masked PV 
