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MPN Voice

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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

•12 hours ago

1 Reply

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

•16 hours ago

9 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

•17 hours ago

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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

•18 hours ago

7 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

•23 hours ago

7 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

•1 day ago

2 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

•1 day ago

11 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

•1 day ago

3 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

•2 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

•2 days ago

17 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

•2 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

•2 days ago

9 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

•2 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

•2 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

•2 days ago

8 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

•3 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

•3 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

•3 days ago

36 Replies

does anyone out there have histamine intolerance?

hi I’ve just changed from hydroxicarbamide to interferon. Seems ok, fingers crossed, but I also have histamine intolerance amd the absence of Hydroxicarbamide...

hi I’ve just changed from hydroxicarbamide to interferon. Seems ok, fingers cro...

Loubprv

Volunteer•4 days ago

9 Replies

Stem cell transplant

I haven’t posted for a while as things have gotten very complicated for me recently my partner was diagnosed with stomach cancer and around the same time I ran...

I haven’t posted for a while as things have gotten very complicated for me recen...

Leighcox85

•4 days ago

18 Replies

Migraine

Last month have been taking 2 hydro tablets Saturday and Sunday and still 1 rest of week. My problem is have started to get white lights flashing in my eyes....

Last month have been taking 2 hydro tablets Saturday and Sunday and still 1 rest...

mag123ben

•4 days ago

3 Replies

my recent absence from this site

maybe some of you have noticed I’ve been absent from this site of late well after a long illness my husband passed away on the 19th March. It was an illness...

maybe some of you have noticed I’ve been absent from this site of late well afte...

Wyebird

•4 days ago

83 Replies

Herediatary ET

I'm JAK2 positive with ET and I'm coping well on Hydroxy with regular visits to the Haem/Oncology team. My 38 year old son mentioned that he had these huge...

I'm JAK2 positive with ET and I'm coping well on Hydroxy with regular visits to ...

Janglo

•5 days ago

15 Replies

malaria

Unfortunately I cannot help although I have taken anti malaria pills in the past it was before I was on hydroxycarbamide

Unfortunately I cannot help although I have taken anti malaria pills in the past...

grandpa101

•5 days ago

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High Ferritin, LDH & ALT

Hi Friends, I’m ETJ2+ My last bloods showed Ferritin- 490 (says max normal is 200) LDH- 268 (says max normal is 220) ALT- 99 (says max normal is 55) I was...

Hi Friends, I’m ETJ2+ My last bloods showed Ferritin- 490 (says max normal is...

Threelions

•6 days ago

4 Replies

Shingles Jab

I am on hydroxy. Am I OK to have the shingles jab?

robcaduk

•6 days ago

14 Replies

Getting tested for autoimmune diseases

I posted about experiencing intermittent burning joint pain and I appreciated hearing everyone's responses. There were a few people who said they also had...

I posted about experiencing intermittent burning joint pain and I appreciated he...

brightlys

•6 days ago

22 Replies

Malaria tablets

Hi everyone, am I the process of looking at a holiday. I know yellow fever vaccine is a big no no. Am on hydroxycarbamide and daily aspirin with a diagnosis...

Hi everyone, am I the process of looking at a holiday. I know yellow fever vacc...

SazzaC

•6 days ago

4 Replies

Team alpha!!!!

I acted like an adult today and had my MRI! Stable old lesions with no change. On my last MRI before Besremi I had a new one and it has shown improvement!!!!...

I acted like an adult today and had my MRI! Stable old lesions with no change. ...

KLCTJC

•6 days ago

24 Replies

Hello from Syracuse, NY!!

Hello everyone. I am new here and newly diagnosed with ET. Using forums of this type to learn about MPN's. Will likely spend my time lurking to learn. Nice...

Hello everyone. I am new here and newly diagnosed with ET. Using forums of this ...

Skidsteer565

•6 days ago

16 Replies

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Posts - MPN Voice | HealthUnlocked

MPN Voice

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

does anyone out there have histamine intolerance?

Stem cell transplant

Migraine

my recent absence from this site

Herediatary ET

malaria

High Ferritin, LDH & ALT

Shingles Jab

Getting tested for autoimmune diseases

Malaria tablets

Team alpha!!!!

Hello from Syracuse, NY!!

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