MPN Voice | HealthUnlocked

I had a follow-up MRI and met with my Neurologist/NF Specialist yesterday. There is no sign of recurrence of the brain tumor. In fact, it seems I have a...

Thanks to everyone who responded to my previous post on Progression. Since then I have had my BMB and the worst has been confirmed. Not only have I progressed...

Forgive me if this is inappropriate, but my husband and I have lost our house in the Eaton Canyon fire currently being worked on in Los Angeles County, CA USA....

I had an appointment with the haematologist last week, cutting the hydroxy to eery other day had caused my platelets to rise to 740 from under 400 last month,...

I'm wondering whether there's any connection between either Polycythemia vera or hydrea with Rayanud's? I'm experiencing quite painful and very persistent...

Wishing everyone a Peaceful and Joyful Holiday Season and Best Wishes for the New Year.

i was just diagnosed w ET and am hoping to connect with others

Hello! I have reduced my dose to 100mg from 150 every two weeks as my HCT began drop below the normal range. So far, the allele burden continues to drop:...

Hi all, New to this part of the forum... I've recently met some wonderful helpful people on some of the other forums here at health unlocked though and very...

Hello, I purchased this white paper, but not sure I can share online. If you send me a message, I'll forward you the PDF. Here is the summary online:...

Does anyone know if it is dangerous for ppl with PV to take a trip to areas that have a high altitude ? I'm thinking of taking a vacation to an area of Italy...

Hello friends, In November last year I started Hydroxycarbamide 500 mg capsules and, with any new medication, I thoroughly read the packet leaflet. This is...

I'm really interested in views or experiences as to what triggers night sweats please?I have post ET MF, agreed 53, diagnosed ET when I was 30. Last night I...

I have suffered from mild anaemia in the past and took iron tablets for it. Now despite taking iron tablets I am still anaemia. My haematologist has told me...

From about last week, I've been affected by dizzy spells. Very un- nerving. Never experienced this previously even after a "hard day's night." I'm ET...

I’ve just read an interesting response in another thread regarding splitting a syringe over two injections, which has got me thinking. Due to the Pegasys...

Hi all, good morning and wish you all a wonderful holiday. I had a conversation with a friend about the difference in efficacy between old and new...

Hi All.I will be starting Hydroxycarbamide on 31st Dec taking 500mg everyday. I only have one concern. When I was taking interferon to control my blood levels...

I’ve had a “spot/growth” on my arm for a few weeks, it seemed to come up very quickly but didn’t go away. I called the GP and was directed to the nurse...

My 76 yr.old husband has been diagnosed with this and soon will have to start treatment with Hydroxyurea. He had no symptoms and the diagnosis was found after...

Dear fellow MPNers . Happy New Year. I also fell foul of differing local criteria for transfusions: in Edinburgh, where I’d moved to partly for the good...

I had a routine follow-up with my specialist yesterday and my platelets are higher than usual. I'm very low risk ET (MPL), on daily aspirin only. They've been...

I have ET (+ bone marrow fibrosis). I changed from Anagrelide then back to Hydroxycarbomide (which I don't get on with at all so they just tried it again) to...

Guys phlebotomy has moved to the Cancer Centre from Tabard Annexe, as I found out the hard way when I went to have a blood taken yesterday. it took a...

My Hgb was down to 57 ( yes fifty seven), I was sent to Edinburgh as an emergency and I had a unit of packed red blood cells which brought it up to eighty...

I have to see an Oral Surgeon and I’m nervous about having a procedure. I’m going to contact my hematologist because I don’t know if I need to stop HU and...

A huge Thank You! shout out to all knowledgeable leads and help on this Forum. Esp the advice to advocate for myself. Arranging a second opinion didn’t go...

I got a Jak2 VAF update Dec 3. It was 3%, down from 5% a year ago and 14% at start. The latest reading of 3% is a 79% reduction from baseline. See following...

From what little I understand, Jakafi can and does reduce the fibrosis within the bone marrow while reducing the allele burden (number/percentage of dodgy...

There are trials of this sort going on, some members are in one. Not sure if this one has been posted. It's from China n = 44 for the full period of 2...