Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for November 2024

follow up to my UNUSUAL SYMPTOMS POST

Hi all, Just a little further info… apparently I’ve found the symptoms I explained a relief can be a cause of Pancreatitis from taking interferon, therefore...

Hi all, Just a little further info… apparently I’ve found the symptoms I explai...

Grendall

•1 month ago

2 Replies

unusual symptoms

Hi all, I hope everyone is doing well or as well as can be…. I am also on a ET forum on fb and asked a question, therefore just trying to get any further...

Hi all, I hope everyone is doing well or as well as can be…. I am also on a ET...

Grendall

•1 month ago

14 Replies

Status of Jakafi XR (once per day pill)

In prior posts this was discussed. Last year FDA said "the FDA cannot approve the application in its present form". I thought it was dead. But it's not,...

In prior posts this was discussed. Last year FDA said "the FDA cannot approve t...

EPguy

•1 month ago

6 Replies

Want to take advantage of all our features? Just log in!

Free prescriptions

Can I please just check I have essential thrombocythemia jak2 positive on aspirin only, should I be able to get free prescriptions or is it only if you are on...

Can I please just check I have essential thrombocythemia jak2 positive on aspiri...

Penny-10

•1 month ago

15 Replies

integrative doc

it’s a little over a year since being diagnosed with PV I’ve been on hydroxy and while side effects are minimal considering I’ve got cancer I’m interested in...

it’s a little over a year since being diagnosed with PV I’ve been on hydroxy a...

Wendrew

•1 month ago

22 Replies

AUSTRALIAN PREMIERE MPN SPECIALIST Q & A

Good morning members & guests of MATES, Today I am writing to inform anyone who may wish to attend our next Cafe Catchup ‘Virtual’ meeting that we will be...

Good morning members & guests of MATES, Today I am writing to inform anyone who...

socrates_8

•1 month ago

6 Replies

Availability of Pegasys PFS 135 mcg/.5mL

Hi all I live in Australia. I first used the above injection first time in July 2024. In the last consultation with my specialist he reduced the frequency to...

Hi all I live in Australia. I first used the above injection first time in July...

Stoosh

•1 month ago

14 Replies

Weight gain on Hydroxy anyone?

Hello friends, I am ready to throw in the towel. After almost 4 years since starting Hydroxycarbamide (currently 500mg/day), it is still a disappointment to...

Hello friends, I am ready to throw in the towel. After almost 4 years since s...

Goosebumps52

•1 month ago

13 Replies

shingles

hello all, I’m just getting over the shingles, it’s been three weeks of torture. Anyone else on Jakafi get the shingles? I was wondering if they had anything...

hello all, I’m just getting over the shingles, it’s been three weeks of torture....

ggrana

•1 month ago

9 Replies

Newly diagnosed Polycythemia Vera

Hi everybody, I'm Ciaran & I have been very recently diagnosed Polycythaemia Vera. As you're probably aware, the early stages of research are quite daunting...

Hi everybody, I'm Ciaran & I have been very recently diagnosed Polycythaemia Ve...

Kwinzola

•1 month ago

11 Replies

Rectal bleeding

Having recently had both a CT colonoscopy and a sigmoidoscopy to identify why I am experiencing rectal bleeding, I read on the uk cancer research website that...

Having recently had both a CT colonoscopy and a sigmoidoscopy to identify why I ...

Ipadlin

•1 month ago

11 Replies

Anecdote: Lifestyle changes may have lowered my blood counts

Hi all! I wanted to share this anecdote in case it's motivating. I have ET Jak2 and do not take medications. I was diagnosed a few years ago, though I've had...

Hi all! I wanted to share this anecdote in case it's motivating. I have ET Jak2...

Lucy2022

•1 month ago

19 Replies

Bristol/ Weston losing mpn doctor.

Evening all. Bristol and Weston-s-Mare hospital (UK) is losing our current mpn hospital doctor, if anyone hears of a replacement, please can you let the rest...

Evening all. Bristol and Weston-s-Mare hospital (UK) is losing our current mpn ...

Cat_lady52

•1 month ago

1 Reply

New doctors.

Saw a new doctor, said would go through my tablets. Quite a few granted . One particular he mentioned ( forget names) but did I still have gout in my feet....

Saw a new doctor, said would go through my tablets. Quite a few granted . One pa...

mag123ben

•1 month ago

4 Replies

vitamin K

I have PV. I take Ruxolitinib and feel very well now. I do sometimes get night time leg cramps though and have heard that vitamin K may help with them. Does...

I have PV. I take Ruxolitinib and feel very well now. I do sometimes get night ...

Bows12

•1 month ago

16 Replies

Been A while

Afternoon all,Been a long time since using this forum. I had a Meningioma tumour and Essential thrombycythemia Cal r diagnosed in 2021. Craniotomy of 2021...

Afternoon all,Been a long time since using this forum. I had a Meningioma tumour...

Smudger0122

•1 month ago

14 Replies

High blood pressure

After starting ruxolitinib for about 6 weeks bloods are fine for first time in a long will symptoms have settled but after seeing GP for routine check up...

After starting ruxolitinib for about 6 weeks bloods are fine for first time in...

Badger1

•1 month ago

6 Replies

Has anyone else had their JAK2V617F mutation disappear completely and then have a TET2 of unknown significance come up? Only on aspirin?

First diagnosed with ET and JAK2V617F was low alle burden. A year later no mutation, 2 years later still no JAK2V617F but acquired new TET2 mutation with...

First diagnosed with ET and JAK2V617F was low alle burden. A year later no mutat...

TootsRoo

•1 month ago

Be the first to reply

Besremi

Hi I have been on besremi for 18 months and my hematocrit is finally becoming controlled. Has anyone gone down to monthly shots? Has anyone been able to track...

Hi I have been on besremi for 18 months and my hematocrit is finally becoming co...

WIL2US

•1 month ago

20 Replies

It started well…

Hello all A quick update before I ask for your thoughts please… 66 years old, ET MPL diagnosed 2015 - asymptomatic for 9 years, treated with aspirin only...

Hello all A quick update before I ask for your thoughts please… 66 years old, ...

JaynieQ

•1 month ago

3 Replies

ET with MPL mutation. Aspirin causing erosions in stomach lining .

Hi! I have ET with an MPL gene mutation. So far my treatment has been 75mg of aspirin. Since June, I have been hospitalised with oesophageal spasms- very...

Hi! I have ET with an MPL gene mutation. So far my treatment has been 75mg of as...

LittleMsTired

•1 month ago

11 Replies

This may be an interesting article to read.

https://isom.ca/article/targeting-the-mitochondrial-stem-cell-connection-in-cancer-treatment-a-hybrid-orthomolecular-protocol/

https://isom.ca/article/targeting-the-mitochondrial-stem-cell-connection-in-canc...

Amethist

•1 month ago

1 Reply

ET, JAK2, ASXL1 and Besremi

Hello~ First of all, I would like to thank all of you for your shared stories and accompanying research. I have learned many new things and appreciate the...

Hello~ First of all, I would like to thank all of you for your shared stories a...

Mtn_Lake_4ME

•1 month ago

9 Replies

Splitting Pegasus vials

Hi ET Jak2, just been moved from HU to Pegasus 45mcg, due in HU being intolerable. Looking for advice on how not waste the drug (especially considering...

Hi ET Jak2, just been moved from HU to Pegasus 45mcg, due in HU being intolerab...

zephyr01

•1 month ago

10 Replies

PV: sleep study

Hi! I'm 14+ years diagnosed with secondary PV. I've just had my first appointment at The Christie, Manchester (v long story). As well as other...

Hi! I'm 14+ years diagnosed with secondary PV. I've just had my first appoint...

MancMermaid

•1 month ago

4 Replies

Edoscopy Results ; Anyone share their experience or advice please?

I’m ET J2+ & have been on peg & daily asprin since diagnosis c 4 years ago (also take statins & perindopril) I had been suffering from excessive heartburn &...

I’m ET J2+ & have been on peg & daily asprin since diagnosis c 4 years ago (also...

Threelions

•1 month ago

19 Replies

Supplements that help MPNs

Hi all I have ET jak2 and am on Pegasys, which is working well for me. I also have fibromyalgia, IBS, Raynaud’s and arthritis which don’t help with working...

Hi all I have ET jak2 and am on Pegasys, which is working well for me. I also h...

Jellybean129

•1 month ago

22 Replies

Besremi Trial update

Apologies for the long post. I have learned so much from this site so I would like to share my experiences on the Besremi trial at MD Anderson in Houston,...

Apologies for the long post. I have learned so much from this site so I would l...

CLake4

•1 month ago

5 Replies

too many phlebotomies?

How many phlebotomies are too many? I just had my 9th phlebotomy this year, with possibly one more next month. The frequency has increased every year over the...

How many phlebotomies are too many? I just had my 9th phlebotomy this year, with...

Moonflowers_

•1 month ago

8 Replies

Antibiotics with E.T.

Hello all, just a question about the antibiotic Nitrofurantoin an antibiotic I’ve been given for UTI after having had two previous different antibiotics in...

Hello all, just a question about the antibiotic Nitrofurantoin an antibiotic I’v...

azaelea

•1 month ago

7 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2024

follow up to my UNUSUAL SYMPTOMS POST

unusual symptoms

Status of Jakafi XR (once per day pill)

Free prescriptions

integrative doc

AUSTRALIAN PREMIERE MPN SPECIALIST Q & A

Availability of Pegasys PFS 135 mcg/.5mL

Weight gain on Hydroxy anyone?

shingles

Newly diagnosed Polycythemia Vera

Rectal bleeding

Anecdote: Lifestyle changes may have lowered my blood counts

Bristol/ Weston losing mpn doctor.

New doctors.

vitamin K

Been A while

High blood pressure

Has anyone else had their JAK2V617F mutation disappear completely and then have a TET2 of unknown significance come up? Only on aspirin?

Besremi

It started well…

ET with MPL mutation. Aspirin causing erosions in stomach lining .

This may be an interesting article to read.

ET, JAK2, ASXL1 and Besremi

Splitting Pegasus vials

PV: sleep study

Edoscopy Results ; Anyone share their experience or advice please?

Supplements that help MPNs

Besremi Trial update

too many phlebotomies?

Antibiotics with E.T.

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive