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MPN Voice

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Question-New

Hi! So glad for this group. Have suffered with migraine since I was 8yo and have been treated for hypertension for over 13 years and I'm now 55. I have...

Hi! So glad for this group. Have suffered with migraine since I was 8yo and ha...

MPNJunebug

•5 hours ago

2 Replies

magnesium supplements

Hi all It’s been a while since I posted on here. But I have a question regarding sleep. I have ET, Jak2, had it 7 years, and at the moment take aspirin and...

Hi all It’s been a while since I posted on here. But I have a question regardin...

Grumpyfairy

•13 hours ago

1 Reply

Question For Hunter

Hi, This is my first post. I had my second bone marrow biopsy today, hoping to get a specific diagnosis of which MPN I have. I saw a hematologist first, then...

Hi, This is my first post. I had my second bone marrow biopsy today, hoping to...

Bikelove

•20 hours ago

2 Replies

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pulmonary hypertention

developed pulmonary hypertension after having phlebotomys

AllEars

•1 day ago

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Jakavi advice please

Hi everybodyI learned today that my ET has progressed to MF. I had a bone marrow biopsy which seems to confirm it, although a spleen scan showed my spleen is...

Hi everybodyI learned today that my ET has progressed to MF. I had a bone marrow...

Sivasi

•1 day ago

31 Replies

Frequent styes

I know that this is not a serious symptom, but I was just wondering if anyone else keeps getting styes. I seem to get rid of one and then a week later get...

I know that this is not a serious symptom, but I was just wondering if anyone el...

Pippapot

•2 days ago

10 Replies

Starting dose for pegasys?

Im a 37 year old female dg. with ET JAK2 . My illness is showing symptoms of masked PV and we are now starting pegasys interferon, as i have had severe...

Im a 37 year old female dg. with ET JAK2 . My illness is showing symptoms of mas...

Ninete

•2 days ago

10 Replies

Offer from MPN Advocacy Education for PV

MPN International looking for PV patients for research. Interest...?

william-Indo

•3 days ago

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Essential Throbocytosis and JAK2

Does anyone experience Shen pain. I do occasionally and was wondering if it had anything to do with the dx

Does anyone experience Shen pain. I do occasionally and was wondering if it had...

Preacherswife

•3 days ago

6 Replies

Getting ready for summer. Protection from sun and staying cool

Hi all, It will be my first summer on HU and I am a little concerned about how to protect my skin, now that it needs extra protection because of HU, and how to...

Hi all, It will be my first summer on HU and I am a little concerned about how t...

JustKeepSw1mming

•4 days ago

21 Replies

Hydroxycarbamide Dose

Thank you to every one that replied with help and advice regarding my question about the dose increase , it’s always so very helpful to ask questions on here...

Thank you to every one that replied with help and advice regarding my question a...

Yoganana1

•4 days ago

2 Replies

Myelofibrosis

If you have MF, this link to Naveen P MD from MD Anderson maybe useful https://thebloodline.org/TBL/165e165/ Cheers

If you have MF, this link to Naveen P MD from MD Anderson maybe useful https://...

william-Indo

•4 days ago

4 Replies

triple negative pre-fibrotic primary Myelofibrosis with SH2B3 mutation

Hello, I hope everyone in here is doing well with high spirits! Let me start by saying this diagnosis had spiked my anxiety to the point where it’s out of...

Hello, I hope everyone in here is doing well with high spirits! Let me start b...

Dekou

•5 days ago

11 Replies

E.T. and Headaches.

For the past ten days or so I’ve been having really bad frontal headaches forehead, behind the eyes and over the front of head which seem to come from back of...

For the past ten days or so I’ve been having really bad frontal headaches forehe...

azaelea

•5 days ago

18 Replies

Tablets on holiday.

Found out if on holiday and you need extra tablets, you need to go to a (big) chemist. One that has a form. FP,57 you need that as you get your tablets. I...

Found out if on holiday and you need extra tablets, you need to go to a (big) ch...

mag123ben

•5 days ago

1 Reply

Leg ache. ET or unrelated?

These days my lower legs ache all the time. They ache regardless of whether im active or inactive. Do you think this ET/MPN related or something else...

These days my lower legs ache all the time. They ache regardless of whether im a...

BloodZero

•5 days ago

34 Replies

Variants

Variants About 6-7 weeks ago I transferred from my local hematologist to an MPN specialist - a move I feel really good about. She has done some different...

Variants About 6-7 weeks ago I transferred from my local hematologist to an ...

BeOutside

•6 days ago

15 Replies

Palbociclib for MF reducing fibrosis and more

I found this subject inspired by a dead post in the Sjogren's forum. "The drug, palbociclib, may be able to prevent the scarring of bone marrow that existing...

I found this subject inspired by a dead post in the Sjogren's forum. "The drug,...

EPguy

•6 days ago

4 Replies

Hydroxycarbamide

I have been on Hydroxycarbamide since January 2018 500mg tablets two a day Monday -Friday 3 on Saturday and Sunday. Recently I have experienced discomfort in...

I have been on Hydroxycarbamide since January 2018 500mg tablets two a day Monda...

Edinburgh1953

•6 days ago

14 Replies

Hydrocarbonide safety

my husband has recently started hydrocarbonide 500mg daily. What measures does he have to take if any to protect me from this drug. At the moment he feels as...

my husband has recently started hydrocarbonide 500mg daily. What measures does ...

Collie123

•6 days ago

4 Replies

Cambridge

thanks to those who responded. Nice to be able to connect with people in person. I will be coming with my husband. If you want to say hello, look for 2 tall ‘...

thanks to those who responded. Nice to be able to connect with people in person....

artydutch

•6 days ago

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Not taking medication

Is it ok just to stop taking hydroxycarbomide? I have and now worried! I have an appointment on the 1st of May to change to rux my bloods have always been not...

Is it ok just to stop taking hydroxycarbomide? I have and now worried! I have a...

indy22

•6 days ago

18 Replies

Side Effects of Hydrea?

Ho everyone, I had a stroke last year which led to them discovering that I am Jak2 positive. I was initial put onto Pegasus, but that had horrendous side...

Ho everyone, I had a stroke last year which led to them discovering that I am J...

TyronR

•7 days ago

4 Replies

US Senator Joe Lieberman died from MF

Just read this in Wall St Journal. Reproduced below from: https://www.yale64.org/remembrances/lieberman.htm since the WSJ version is in a paywall. -- His...

Just read this in Wall St Journal. Reproduced below from: https://www.yale64.o...

EPguy

•7 days ago

10 Replies

Patients conference in Cambridge

just wondering if anyone on this forum is attending the conference in Cambridge tomorrow?

just wondering if anyone on this forum is attending the conference in Cambridge ...

artydutch

•7 days ago

5 Replies

PV….is cupping contraindicated?

Hi All I hope everyone is well and enjoying whatever sunshine some of us are getting now. I have not been on here in a while. Life & work is manic but plan...

Hi All I hope everyone is well and enjoying whatever sunshine some of us are ge...

LittleLuna

•7 days ago

6 Replies

ET + Anagrelide

Is anyone taking Angrelide and dealing with side effects? I have ET+CALR, became resistant to Hydrea and couldn't tolerate the side effects of Interferon. Now...

Is anyone taking Angrelide and dealing with side effects? I have ET+CALR, became...

Zeppelin11

•7 days ago

9 Replies

My SCT journey continues

Hi all, not posted for a while but I am now at day+33 and finally starting to feel a bit normal again. I had very bad mucositis following sct and then problems...

Hi all, not posted for a while but I am now at day+33 and finally starting to fe...

Flyingsteamer

•7 days ago

24 Replies

Neurology appointment

So grateful I get to push one thing out for a year! I still think my neurologist always looks so confused when I see him.😆. Showed me my scan and that one...

So grateful I get to push one thing out for a year! I still think my neurologis...

KLCTJC

•7 days ago

7 Replies

Tumeric/circumin

Good morning to you all. I wonder if anyone can help with my query. I saw professor Harrison two weeks ago and among things discussed was joint and bone...

Good morning to you all. I wonder if anyone can help with my query. I saw prof...

Oscarsboy

•7 days ago

37 Replies

Write a post or ask a question

Posts - MPN Voice | HealthUnlocked

MPN Voice

Question-New

magnesium supplements

Question For Hunter

pulmonary hypertention

Jakavi advice please

Frequent styes

Starting dose for pegasys?

Offer from MPN Advocacy Education for PV

Essential Throbocytosis and JAK2

Getting ready for summer. Protection from sun and staying cool

Hydroxycarbamide Dose

Myelofibrosis

triple negative pre-fibrotic primary Myelofibrosis with SH2B3 mutation

E.T. and Headaches.

Tablets on holiday.

Leg ache. ET or unrelated?

Variants

Palbociclib for MF reducing fibrosis and more

Hydroxycarbamide

Hydrocarbonide safety

Cambridge

Not taking medication

Side Effects of Hydrea?

US Senator Joe Lieberman died from MF

Patients conference in Cambridge

PV….is cupping contraindicated?

ET + Anagrelide

My SCT journey continues

Neurology appointment

Tumeric/circumin

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