Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for August 2024

High Gamma GT

hi everyone I am in Hydroxy 500mg 6 days a week since May with aspirin daily following my diagnosis of ET due to Jak2 positive. My platelets are 437. End of...

hi everyone I am in Hydroxy 500mg 6 days a week since May with aspirin daily fo...

SpendyWendy

•4 months ago

7 Replies

ice packs

Hi I’m looking to buy an ice pack for an upcoming trip from London to Australia. Does anyone have any recommendations I could get off Amazon or somewhere...

Hi I’m looking to buy an ice pack for an upcoming trip from London to Australia....

Jasbak22

•4 months ago

11 Replies

One week in ….

I’ve been on Momelotinib for one week now and so far so good! Got to say the pharmacist who phoned me terrified me with all the side effects and possibilities...

I’ve been on Momelotinib for one week now and so far so good! Got to say the ph...

lizzziep

•4 months ago

19 Replies

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MPN Pathways: Empowered Voices in Research

MPN Advocate certification program offered by MPN Research Foundation. This is a series of trainings offered over the course of several years, leading to a...

MPN Advocate certification program offered by MPN Research Foundation. This is ...

hunter5582

•4 months ago

8 Replies

SCT Journey No. 7 post sct

Well here I am 15 days post transplant!!! Headaches, stomach cramps, diarrhoea, sore throat. These are all under control with various drugs and even a...

Well here I am 15 days post transplant!!! Headaches, stomach cramps, diarrhoea, ...

LFCLove

•4 months ago

34 Replies

NCCN MPN 2024 Update - Translated

NCCN has translated to the 2024 MPN Guidelines for Patients into Arabic, Chinese, French, Hindi, Portuguese, Russian, and Spanish....

NCCN has translated to the 2024 MPN Guidelines for Patients into Arabic, Chinese...

hunter5582

•4 months ago

6 Replies

referral✅

Thanks to all who responded to my post about getting a referral to Guys Hospital. The appointment came today for early November . I’m thrilled and surprised...

Thanks to all who responded to my post about getting a referral to Guys Hospital...

Janbu

•4 months ago

12 Replies

Polycythemia vera and essential thrombocythemia of intermediate-age: A real-life, multicenter analysis of first-line treatment approach

»In regard to PV, the decision to introduce cytoreduction may be more understandable than in ET. Even young patients with PV are exposed to a higher risk of...

»In regard to PV, the decision to introduce cytoreduction may be more understan...

Manouche

•4 months ago

8 Replies

Ruxolitinib Blood spot/purpura

Hi, I was diagnosed with PV Feb 22. Commenced HU Nov 22 had gastric issues, bone pain etc and was decided to change meds after 15 months on the HU. Changed...

Hi, I was diagnosed with PV Feb 22. Commenced HU Nov 22 had gastric issues, bon...

Hocus58

•4 months ago

11 Replies

MPNs in young and very young patients

I know there are people in this support group who were diagnosed young and who had elevated blood counts for years before the diagnosis and, as this is also my...

I know there are people in this support group who were diagnosed young and who h...

TTA_

•4 months ago

2 Replies

High B6 level

I just got a vitamin B6 result 4.5X over upper limit. I saw a post on Quora from a Dr stating PV can cause this. I find no supporting reports anywhere. Are...

I just got a vitamin B6 result 4.5X over upper limit. I saw a post on Quora fro...

EPguy

•4 months ago

12 Replies

severe reaction to interferon

hi I just wanted to warn patients who might be experiencing a SEVERE reaction to interferon to speak to their haematologist as soon as possible for advice....

hi I just wanted to warn patients who might be experiencing a SEVERE reaction t...

Loubprv

Volunteer•4 months ago

24 Replies

Hydroxy and raised bumpy red rash, itching. Anyone experience this? Anything help? Anyone seeing an integrative Oncologist?

I started in HU again ( last time my numbers did not drop significantly and some of the side effects were increasing so I took a break) After a few doses, I...

I started in HU again ( last time my numbers did not drop significantly and some...

EANgardengirl

•4 months ago

10 Replies

Blood Counts - WBC okay?

I have been on Besremi 350 mg since the beginning 2023. My numbers are very favorable. I noticed that my WBC has been dropping as well as my platelets. No...

I have been on Besremi 350 mg since the beginning 2023. My numbers are very f...

MrsBerri

•4 months ago

3 Replies

Hot flushes

Hi, I am getting hot flushes that seem to have been increasing in frequency through the day and night in the last year or so. I am 65 and am 17 years past the...

Hi, I am getting hot flushes that seem to have been increasing in frequency thro...

SDJD

•4 months ago

17 Replies

IFN Journey Update

So having switched to every other week on 45mcg of Peggy my HCT appears to be getting control but my Neutrophils are again low [0.5]. My Haemotologist has said...

So having switched to every other week on 45mcg of Peggy my HCT appears to be ge...

DougyW

•4 months ago

8 Replies

Interferon v Ruxonitlib

Hi Everyone, I’m looking for some advice, I need to decide which treatment course to take, I have PV with early MF, a history of clotting and very high...

Hi Everyone, I’m looking for some advice, I need to decide which treatment cou...

DarcyShepp

•4 months ago

18 Replies

Hello, new member

Thank you for all allowing me to join this forum. It will be so good to correspond with people who have already "been there". A bit about me. I am a female,...

Thank you for all allowing me to join this forum. It will be so good to correspo...

nellietheelephamt

•4 months ago

19 Replies

Fedratinib

There has recently been changes in Australia making Fedratinib available on compassionate grounds for high risk MF. Has anyone tried it? I've read the...

There has recently been changes in Australia making Fedratinib available on comp...

Hatchie

•4 months ago

7 Replies

Momelitinib advice!

I’ve been prescribed Momelitinib today, as expected. I had to sign I’d been informed of all the possible side effects. I was, in a way, looking forward to...

I’ve been prescribed Momelitinib today, as expected. I had to sign I’d been info...

lizzziep

•4 months ago

41 Replies

ET JAK2 Positive. Recently developed “dent” in top of head

Hi, I don’t think this is related to my ET diagnosis. But I’ve recently developed a “dent” in the top of my head. About an inch and half in length. Not really...

Hi, I don’t think this is related to my ET diagnosis. But I’ve recently develop...

Newbie16

•4 months ago

17 Replies

Referral to a specialist

Just a little rant..I’ve just had my 3 monthly telephone call with a haematologist ( different one each time). HCT still raised so Hydroxy is being increased...

Just a little rant..I’ve just had my 3 monthly telephone call with a haematologi...

Janbu

•4 months ago

18 Replies

Potential Cure for CALR+ patients? Any clinical information on JNJ-88549968?

hi there, I’ve just read about the bispecific monoclonal antibodies JNJ-88549968 which are currently in a phase 1 trial. The (pre-clinical) paper sounds very...

hi there, I’ve just read about the bispecific monoclonal antibodies JNJ-88549968...

adiummy

•5 months ago

5 Replies

Covid, Paxlovid??

After more than 4 years of not eating out we finally ventured out once for dinner with old friends. Four days later I tested positive. I have 3 days to...

After more than 4 years of not eating out we finally ventured out once for dinne...

Meatloaf9

•5 months ago

54 Replies

Peg problem.

Today I had my consultation following bloods with my local Haematologist at hospital. All results are in range on my Peg Interferon 45 monthly. I am...

Today I had my consultation following bloods with my local Haematologist at hos...

Exeter21

•5 months ago

23 Replies

Post ET MF Update

Hi, I posted earlier in the year on behalf of my Dad (77) who has post ET MF. Dad has been taking HU for several years & it has been fairly good at keeping...

Hi, I posted earlier in the year on behalf of my Dad (77) who has post ET MF. ...

moongazer100

•5 months ago

8 Replies

Updating password

I have just received a second email from someone called "Brett" telling me I need to update my password. Has anyone else had to do this? I am concerned in case...

I have just received a second email from someone called "Brett" telling me I nee...

Turfbeg

•5 months ago

7 Replies

portal Hypertension

Hi everyone, Has anyone had portal hypertension due to blood clots caused by an MPN? If so, I’d really like to hear your experience. Thanks in advance

Hi everyone, Has anyone had portal hypertension due to blood clots caused by a...

DarcyShepp

•5 months ago

14 Replies

Changing to Momelitinib

I had a phone consultation with Guys this afternoon. For the first time they asked for blood tests before the appointment. This was arranged locally by my...

I had a phone consultation with Guys this afternoon. For the first time they ask...

lizzziep

•5 months ago

18 Replies

Peg interferon

Hi all,I have been on peg interferon for 10 weeks. Platlets decreased fast from 1713 to 1405 after 2 weeks on 45mg, then to 898 after 2 weeks at 90mg, then...

Hi all,I have been on peg interferon for 10 weeks. Platlets decreased fast from ...

Mike1974

•5 months ago

4 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2024

High Gamma GT

ice packs

One week in ….

MPN Pathways: Empowered Voices in Research

SCT Journey No. 7 post sct

NCCN MPN 2024 Update - Translated

referral✅

Polycythemia vera and essential thrombocythemia of intermediate-age: A real-life, multicenter analysis of first-line treatment approach

Ruxolitinib Blood spot/purpura

MPNs in young and very young patients

High B6 level

severe reaction to interferon

Hydroxy and raised bumpy red rash, itching. Anyone experience this? Anything help? Anyone seeing an integrative Oncologist?

Blood Counts - WBC okay?

Hot flushes

IFN Journey Update

Interferon v Ruxonitlib

Hello, new member

Fedratinib

Momelitinib advice!

ET JAK2 Positive. Recently developed “dent” in top of head

Referral to a specialist

Potential Cure for CALR+ patients? Any clinical information on JNJ-88549968?

Covid, Paxlovid??

Peg problem.

Post ET MF Update

Updating password

portal Hypertension

Changing to Momelitinib

Peg interferon

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