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MPN Voice
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Established Diagnosis of Myelofibrosis

Well, after months of not really knowing, my beautiful wife Joyce has a confirmed diagnosis. Her BMB taken 24 days ago quote "shows early changes, with reticulin fibrosis of her bone marrow, but lots of normal haemopoiesis still remains"

She really is doing remarkably well, considering what she has been through since May the 1st. Her platelets react so quickly to Anagrelide, and though they have been up as high as 2000, and as low as 60, they are now around normal, though a bit more tweaking will be needed. The hemo has said that being without her spleen is a bit of a blessing, as it makes for a simpler therapy, though it has to be more accurate. Joyce is still being treated for her Portal vein thrombosis, now with warfarin, and has no symptoms of it. The large hematoma (thanks to a very poor nurse, and the fact Wales NHS does not license injecting heparin anywhere other than the abdomen!!) in her abdomen wall is slowly dissipating. White and red cells all seem either normal or close to it. And she has regained most of the weight she lost,

May I take this opportunity to thank all that have showed an interest in her welfare over the past few months

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Hello jointpain. I’m so glad your wife is feeling better, and the fact that you now have an accurate diagnosis is more reassuring for both. Your journey has been really worrying for the two of you, it’s been awful to read, A very tough time. Onwards and upwards now.

With very best wishes to you and Joyce. Sandy x

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Hear hear... :-)

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That’s fantastic news. Now you can both start living again! E hugs to you both. Kindest regards Aime xx😻😻

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Thanks for the update. You and your wife came into my thoughts today.

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Really pleased that your wife has got a diagnosis and more importantly, she’s finally responding to treatment. You will both be able to relax a little after a traumatic few months.

Good luck

Mary x

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Really good to hear your news, and how well your wife is doing. If the warfarin needs to be permanent, you might like to ask about the new(ish) oral anticoagulants instead. They have the huge advantage of being taken as a standard dose that doesn't need regular blood tests And it isn’t affected by dietary factors. - Xarelto ( rivaroxaban) Is the one I’ve been on for 4 yrs or so ever since the pulmonary embolisms were diagnosed. Works fine.

All the best

Rachel

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Hi. I’m happily on Eliquis blood thinner because Warfarin levels were difficult to keep in safe zone. I’m curious whether her diagnosis of MF was made by a really good MPN expert. I’m far from knowledgeable about MF but some of what you say makes me wonder if she’s truly MF or just “slightly”. I don’t know any of your wife’s history which you may have discussed here. But. I too have fibrosis in my bone marrow but i was diagnosed as ET as the fibrosis was just a small amount. And that diagnosis was from one of the top places in my country. It sounds like your lovely wife’s bone marrow has lots of healthy components in it. If there’s a top MPN place, better than where you went, I’d recommend you consider going. I just today read an article on Patient Power, an online program out of the U.S. for MPN,, where the doctor stressed the benefits of going to a top, big MPN specialty center so accurate diagnosis & treatment can be decided. They could probably get some of her bone marrow from the place it was done. (I’ve had 2 additional locations evaluate mine from the place it was performed. Then the treatment plan can be discussed between that place & her current place. Just a thought. But regardless of all of that, it sounds like you’re both doing well which is really great. Be well & hugs to both of you. Katie

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So delighted you have a diagnosis. You and your lovely wife have really been through the mill these past six months.

As you’ve no doubt read here the understanding, management and treatment options for MF are moving at an incredible rate. As others have said it really is critical that you get advice from someone who is on top of this MPN business. They are many capable and / or well meaning Haems out there but they can’t be completely familiar with every rare blood disease. From what I’ve read right now being at the cutting edge of understanding in relation to MF may make a difference to outcomes. Wishing you both all the very best.

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Thank you for your best wishes. And yes treatments are changing quickly. I read only on Wednesday about how interferon can cure early reticulin fibrosis, which I forwarded to the hemo, in the hope he reads it. Copy and paste here? Maybe? pvreporter.com/interferon-t...

And thank you all for your support

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So pleased to hear that your wife finally has her diagnosis. I hope she now gets the care and treatment she deserves.

Karen

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I am so pleased that there are improvements with the blood counts and that your wife has been regaining her weight, that is really wonderful, especially considering how very ill she has been.

Big hugs to you both!

Peter

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So pleased to hear you and your wife finally have some answers and that there has been improvement - it has been a dreadful time for you both + I hope she will now get some consistency of care. Very best wishes to you. Anne-Marie.

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That is wonderful news! Hugs to both of you..

Sheryl

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Your wife is on a rollercoaster. So glad she is doing well at the moment. I think this is partly due to the huge support she is getting from you. You sound like a loving couple.

God bless.

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Just to give you some heart, I can only say that I was diagnosed with MF at the beginning of the year and also have no spleen. Since going on Jakavi when I hit 65, I have felt back to my normal self and that outweighs any concerns about the MF prognosis as far as I am concerned! I also had to go to a centre of excellence to get things sorted out. Good luck to you and your wife.

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