Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,731 posts

All posts for March 2021

Platlets have gone down

Hi, My platelets have been around 544, then 587 but then they went down at my last two appointments to 578 then 542. Each appointment 3 months apart. Is this...

Hi, My platelets have been around 544, then 587 but then they went down at my la...

EmeraldA

•3 years ago

7 Replies

Left foot in pain tingling sensation going up my leg

Hi my left foot has I've been in pain with for a week few days later I notice a little lump underneath it hurts to walk on stand on I get like tingling...

Hi my left foot has I've been in pain with for a week few days later I notice a ...

Jody00

•3 years ago

15 Replies

Seems like triple-negative ET is only "the most benign form" in the short-term. Perspective from a younger individual

I preface this post with stating that this is merely my personal perspective/opinion as a young (age 30) potentially triple-negative ET individual based on my...

I preface this post with stating that this is merely my personal perspective/opi...

cmc_ufl

•3 years ago

84 Replies

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I’m scared

Yesterday I dropped a letter into my doctors asking if she would chase up a DEXA scan appt that my haematologist had requested last July. I had one 3 years...

Yesterday I dropped a letter into my doctors asking if she would chase up a DEXA...

jillydabrat

•3 years ago

34 Replies

Turmeric supplement

Hi, I have decided to start taking a Turmeric supplement in my never ending quest to alleviate itching' and have bought a box of "ultra turmeric with black...

Hi, I have decided to start taking a Turmeric supplement in my never ending que...

JP1952

•3 years ago

16 Replies

FDA Issues Complete Response Letter for Ropeginterferon Alfa-2b for Polycythemia Vera

« The FDA has issued a complete response letter regarding the biologics license application for ropeginterferon alfa-2b-njft for the treatment of patients with...

« The FDA has issued a complete response letter regarding the biologics license ...

Manouche

•3 years ago

10 Replies

Book your Covid Vaccination

Can I just warn everybody who has not been given their second covid vaccination to phone 119 and book it. Firstly, Stef phoned as he hadn't been given a date...

Can I just warn everybody who has not been given their second covid vaccination ...

jillydabrat

•3 years ago

20 Replies

Astrazeneca vaccine and platelet rise

About 2 weeks after having my first astrazeneca vaccination I had my regular (3 monthly ) blood test. I have PV and have taken hydroxycarbamide and 75mg...

About 2 weeks after having my first astrazeneca vaccination I had my regular (3...

Turfbeg

•3 years ago

22 Replies

Update on vaccine & blood cancers from Blood Cancer UK

This popped into my inbox tonight from Blood Cancer UK. I thought some of you might be interested in the explanations and limitations discussed. I found the...

This popped into my inbox tonight from Blood Cancer UK. I thought some of you mi...

Ovingite

•3 years ago

4 Replies

post stem cell transplant covid question

I am now approaching 21 months post transplant (MF) and feeling well. My last consultation and bloods was about 3 months ago. I've only had phone consultations...

I am now approaching 21 months post transplant (MF) and feeling well. My last co...

Dodders

•3 years ago

2 Replies

Pegasys- smouldering systemic mastocytosis

I was told I had to get injections to slow down mast cell production. When I got the prescription it said a form of chemotherapy? Anyone in my position? Not...

I was told I had to get injections to slow down mast cell production. When I got...

Holiday1111

•3 years ago

3 Replies

Has anyone got continuous muscle weakness throughout the body after Pfeizer covid jab

Covid jab muscle weakness

happy48

•3 years ago

12 Replies

Had to share him holding his little lantern

Here you go Jedireject (Chris), made the first lantern today, only 2 more lanterns to go. 3 Christmas Carol books for the ladies, 6 wooden bases and I will be...

Here you go Jedireject (Chris), made the first lantern today, only 2 more lanter...

jillydabrat

•3 years ago

14 Replies

Stem cell replacement

Has anyone traveled down the road of having stem cell/bone marrow transplant? I have MF It looks like it maybe a possibility for me.

Has anyone traveled down the road of having stem cell/bone marrow transplant? I ...

Grizly

•3 years ago

17 Replies

PharmaEssentia Provides U.S. Regulatory Update on Ropeginterferon alfa-2b-njft for the Treatment of Polycythemia Vera (PV)

« PharmaEssentia Corporation a global biopharmaceutical innovator leveraging deep expertise and proven scientific principles to deliver new biologics in...

« PharmaEssentia Corporation a global biopharmaceutical innovator leveraging dee...

Manouche

•3 years ago

2 Replies

New York Times article on MPNs

Apologies if this has been shared already - a really interesting story in the NYT written by a fellow MPN sufferer. She went through ET to PV and then MF and...

Apologies if this has been shared already - a really interesting story in the NY...

Timjonze

•3 years ago

9 Replies

Astra Zeneca vaccine safety

In light of the recent and as-yet-unproven link between the AstraZeneca covid-19 vaccine and the development of thrombosis, can we proceed with accepting this...

In light of the recent and as-yet-unproven link between the AstraZeneca covid-19...

Karol_Rua

•3 years ago

15 Replies

Treatment option

Hi community IFN alpha treatment what is it and is it an alternative to hydroxy for ET. Anyone...

Hi community IFN alpha treatment what is it and is it an alternative to hydroxy ...

Hidden

•3 years ago

1 Reply

General level of blood platerets seen as " normal"/acceptable/bearable in here.

I have been reading lost of posts, but have not reacted on many, maybe because the more you learn, the less you feel that you know :) I have ET Jak 2(maybe...

I have been reading lost of posts, but have not reacted on many, maybe because t...

yarrowleaf

•3 years ago

13 Replies

Cellulitis healing stage

I was put on antibiotics Friday for cellulitis in my stomach I have kidney disease so in relapse at the moment so was quite swollen with Edema, it was bright...

I was put on antibiotics Friday for cellulitis in my stomach I have kidney disea...

Phoebe776

•3 years ago

3 Replies

Deaf and MPN?

Hello everyone, I'm looking for deaf victims to exchange with MPN. I can sign ASL and ISL and DGS. Can I find similarly affected people here? Maybe you?...

Hello everyone, I'm looking for deaf victims to exchange with MPN. I can sign AS...

Mayami4

•3 years ago

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Hydroxy

My consultant is keen for me to start Hydroxy, Ill be 62 in Sept. latest count 463. If Hydroxy bring platelets down, based on my numbers what benefit is it...

My consultant is keen for me to start Hydroxy, Ill be 62 in Sept. latest count ...

Tigger59

•3 years ago

32 Replies

Non-physical side effects on Hydrea

I started treatment just 6 weeks ago and I've been on 6000mg Hydrea (1000mg Mon-Thurs and 500 mg Fri -Sun) now for about 4 weeks. Apart from the usual physical...

I started treatment just 6 weeks ago and I've been on 6000mg Hydrea (1000mg Mon-...

Hidden

•3 years ago

8 Replies

Vaccine on Monday any difference between AstraZeneca vs Pfizer

I have been booked for my vaccine on Monday, I have ET Calr with fairly high platelets, only on Asprin.. Is there any difference between the two considering...

I have been booked for my vaccine on Monday, I have ET Calr with fairly high pla...

Sunny699

•3 years ago

20 Replies

Jak2 positive

I finally got my results back from having high platelets. The nurse told me my platelets are at 800 and my labs came back that I am JAK2 positive. They want to...

I finally got my results back from having high platelets. The nurse told me my p...

Tingle20

•3 years ago

28 Replies

Blood cancer and Covid 19 Vaccinations

Blood cancer and Covid 19 vaccinations. The Kings College , St Thomas and crick institute work showing that having a blood cancer seriously negates the...

Blood cancer and Covid 19 vaccinations. The Kings College , St Thomas and crick ...

catkinspolymer

•3 years ago

16 Replies

Second Pfizer vaccine next week instead of end of April.

I’m extremely lucky and am in contact with a super head of the vaccination clinic at my hospital. She has pushed me in for an early second vaccine next week...

I’m extremely lucky and am in contact with a super head of the vaccination clini...

Loubprv

Volunteer•3 years ago

23 Replies

Diet Food Vitamins & Supplements

Hi all, I was wondering if anyone was able to provide any helpful direction into any of the following: - Generally what kind of diet have you found beneficial...

Hi all, I was wondering if anyone was able to provide any helpful direction into...

Sunny699

•3 years ago

6 Replies

Nobody Wants Cancer. But a ‘Big C’ Label Has Surprising Upsides.

« “The cancer designation did open up significant new funding opportunities, for example from the National Cancer Institute,” said Barbara Van Husen, board...

« “The cancer designation did open up significant new funding opportunities, for...

Manouche

•3 years ago

1 Reply

Vaccine & feeling fantastic

Four days after having my first jab and I feel better than I have in years. Don't know why, only thing that has changed is my getting the vaccine. Holy moly,...

Four days after having my first jab and I feel better than I have in years. Don...

h2ogal

•3 years ago

6 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2021

Platlets have gone down

Left foot in pain tingling sensation going up my leg

Seems like triple-negative ET is only "the most benign form" in the short-term. Perspective from a younger individual

I’m scared

Turmeric supplement

FDA Issues Complete Response Letter for Ropeginterferon Alfa-2b for Polycythemia Vera

Book your Covid Vaccination

Astrazeneca vaccine and platelet rise

Update on vaccine & blood cancers from Blood Cancer UK

post stem cell transplant covid question

Pegasys- smouldering systemic mastocytosis

Has anyone got continuous muscle weakness throughout the body after Pfeizer covid jab

Had to share him holding his little lantern

Stem cell replacement

PharmaEssentia Provides U.S. Regulatory Update on Ropeginterferon alfa-2b-njft for the Treatment of Polycythemia Vera (PV)

New York Times article on MPNs

Astra Zeneca vaccine safety

Treatment option

General level of blood platerets seen as " normal"/acceptable/bearable in here.

Cellulitis healing stage

Deaf and MPN?

Hydroxy

Non-physical side effects on Hydrea

Vaccine on Monday any difference between AstraZeneca vs Pfizer

Jak2 positive

Blood cancer and Covid 19 Vaccinations

Second Pfizer vaccine next week instead of end of April.

Diet Food Vitamins & Supplements

Nobody Wants Cancer. But a ‘Big C’ Label Has Surprising Upsides.

Vaccine & feeling fantastic

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