Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,730 posts

All posts for March 2024

New to this

Have just found out I have blood cancer. Platlets were 750 , after taking hydroxy carbamide for just over a month they are 445. I have to up my tablets from 1...

Have just found out I have blood cancer. Platlets were 750 , after taking hydrox...

mag123ben

•4 months ago

7 Replies

First Injection of Pegasys

I FINALLY got approved for Pegasys, and am to pick it up at the pharmacy by Wednesday. My question is does the first injection happen in the Drs. office, or...

I FINALLY got approved for Pegasys, and am to pick it up at the pharmacy by Wedn...

dogsandhorses

•4 months ago

12 Replies

At last Guys date

Post arrived a miracle in it self ,and then in the stack of letters a hospital.Not till June it's with Priya Sriskandarajah. What do I need to take with me as...

Post arrived a miracle in it self ,and then in the stack of letters a hospital.N...

Spanelmad

•4 months ago

18 Replies

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results

I was advised to ring if not heard about Allele burden results in 2 weeks. just had a call a week after test . Allele burden 5. Which is good… We...

I was advised to ring if not heard about Allele burden results in 2 weeks. jus...

Mostew

•4 months ago

8 Replies

Mood stabilizers?

Hi, can anyone please tell me if ET is contraindicated with mood stabilisers? I have intense anxiety and bi-polar depression (and fatigue).

Hi, can anyone please tell me if ET is contraindicated with mood stabilisers? I ...

Helps-

•4 months ago

10 Replies

Open letter

Hi all: I want to thank all who have posted regarding their experience with MPNs in this forum. I'm very grateful for the information and insight regarding...

Hi all: I want to thank all who have posted regarding their experience with MPN...

Kiruna

•4 months ago

28 Replies

Hair thinning

I have been taking hydroxyurea for two years and noticed my hair is thinning on top and on the sides. Any advice ? Should I switch to another medication or...

I have been taking hydroxyurea for two years and noticed my hair is thinning on...

Winchie

•4 months ago

29 Replies

Potential ET diagnosis

HI All, I’ve been on this forum a few months now but this is my first post. After a routine blood test last October I found out my platelets were just over...

HI All, I’ve been on this forum a few months now but this is my first post. Af...

Joshy87

•5 months ago

16 Replies

Stem Cell transplant register search goes on…

Unfortunately my next appointment with Consultant has been delayed until early April as they are no further advanced in their search for matches on transplant...

Unfortunately my next appointment with Consultant has been delayed until early A...

LFCLove

•5 months ago

7 Replies

Besremi and Rux Combined

I was diagnosed with PV in 2021 and on Hydroxy for about a year. Then in December 2022 was switched to Besremi. I've been on Bes for a little over a year and...

I was diagnosed with PV in 2021 and on Hydroxy for about a year. Then in Decemb...

C_Anne_Orange

•5 months ago

34 Replies

Rebirthday

Thirteen years ago today a nurse walked into my hospital room at UCH London and hung up a bag of stem cells donated by Sarah Gardner ( a forty something...

Thirteen years ago today a nurse walked into my hospital room at UCH London ...

MFBMT2011

•5 months ago

28 Replies

essential thrombocytosis

Thank you for allowing me to join this group. I was diagnosed with JAK @ and essential thrombocytosis this past August. I have been taking Hydrea 500 mg on...

Thank you for allowing me to join this group. I was diagnosed with JAK @ and e...

Preacherswife

•5 months ago

8 Replies

High platelets update….opinions please…..

Just a recap on my situation… 52 year old female under the care of a Haematologist for the last 2 years for platelets over 450. My latest platelet count is...

Just a recap on my situation… 52 year old female under the care of a Haematolog...

Purdy13

•5 months ago

10 Replies

Itching in Myelofibrosis

I'm currently taking Fedratinib and Danazol and am having 6 weekly blood transfusions. In the last few months I've noticed increased itching. Last night I woke...

I'm currently taking Fedratinib and Danazol and am having 6 weekly blood transfu...

Bullace

•5 months ago

2 Replies

Worth switching meds?

Hello friends, I've been on Hydroxy for just over 3 years and am on a small dose of 500mg/day. Platelets are normal but my big complaint is weight gain. I'm...

Hello friends, I've been on Hydroxy for just over 3 years and am on a small dos...

Goosebumps52

•5 months ago

12 Replies

Approved or Trials of RBC lowering drugs?

Does anyone know of any FDA approved drugs that are more effective at lowering RBC's? I have been losing the battle using interferon. I'm currently taking...

Does anyone know of any FDA approved drugs that are more effective at lowering R...

jon1972

•5 months ago

11 Replies

update after 5 months diagnosis of ET

I remember writing here as I took my first hydryea tablet early October 2023 and the fear I felt. This forum has been such a help to me. I am now on 500mg...

I remember writing here as I took my first hydryea tablet early October 2023 and...

Maxpenny

•5 months ago

9 Replies

travel insurance

I declared my ET condition to staysure insurance , they were fine with it My annual insurance was under £200 Hope this helps

I declared my ET condition to staysure insurance , they were fine with it My a...

Caravan-24

•5 months ago

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CALR INCA033989 Antibody Trial

Anyone in the CALR INCA033989 antibody trial ? If so how is it going? i have the type 2 CALR mutation and feel like i have had a terrible case of the flu...

Anyone in the CALR INCA033989 antibody trial ? If so how is it going? i have t...

George1976

•5 months ago

6 Replies

Sauna

I have PV. Can I have a sauna now and again? Thanks

robcaduk

•5 months ago

4 Replies

The ECLIPSE PV trial- Besremi

Is there anyone on here that is in the The ECLIPSE PV trial with Besremi ? I am thinking about trying to join the trial at MD Anderson In Houston. The...

Is there anyone on here that is in the The ECLIPSE PV trial with Besremi ? I am...

Ccsintx

•5 months ago

12 Replies

Travel insurance

I have ET JAK2 and want to get travel insurance is it better to call them as I have tried online and All Clear did not have ET on their list do companies cover...

I have ET JAK2 and want to get travel insurance is it better to call them as I h...

Tilly_Rose

•5 months ago

18 Replies

Terrible pains in my arms!

Hi all Diagnosed 2021 with ET Jak2+ 8% platelets 650 I have been taking peginterferon for about 18 months 45mcg per week with occasional breaks due to side...

Hi all Diagnosed 2021 with ET Jak2+ 8% platelets 650 I have been taking pegi...

Fairbank

•5 months ago

15 Replies

ET and norovirus

Happy Saturday to all. I am feeling totally yuk at the moment having caught a sick bug on top of ET. On meds and aspirin but as I am unable to keep down...

Happy Saturday to all. I am feeling totally yuk at the moment having caught a si...

SazzaC

•5 months ago

12 Replies

Newly diagnosed

Hi, my name is Mandy, i was diagnosed JAK2 positive in January and told 2 weeks ago i had PV and last week was told i had secondary Myelofibrosis i think it is...

Hi, my name is Mandy, i was diagnosed JAK2 positive in January and told 2 weeks ...

Lallybroch1

•5 months ago

16 Replies

Post ET MF - Advice Please

Hello, I am new here - really wish I had found you sooner. My Dad is usually a very active 77 year old. He found out he had ET aged 46 and was initially...

Hello, I am new here - really wish I had found you sooner. My Dad is usually a ...

moongazer100

•5 months ago

28 Replies

ET CALR

hello there, I was diagnosed with ET positive CALR mutation on october2023, On August 2023, suddenly my right eye was totally blind for 30 minutes went...

hello there, I was diagnosed with ET positive CALR mutation on october2023, ...

Neghdar73

•5 months ago

8 Replies

Co pay assistance exhausted for Jakafi

My BCBS coverage through my employer was changed at the new year. Someone decided I was too expensive and changed how drugs were covered. They used to apply...

My BCBS coverage through my employer was changed at the new year. Someone decide...

Wewo01

•5 months ago

7 Replies

Association of Low-Dose Aspirin Use With Prevention of Colorectal Cancer- more good news for those of us on aspirin therapy.

TAKE-HOME MESSAGE This nationwide registry-based cohort study (2004–2018) assessed the association between low-dose aspirin use and risk of colorectal cancer...

TAKE-HOME MESSAGE This nationwide registry-based cohort study (2004–2018) asses...

PhysAssist

•5 months ago

3 Replies

Road blocks

Hi all,I thought I'd update you all. I went into hospital in the 20/02 to have my second last chemo before the BMT. Upon admission, I had a fever. After 4...

Hi all,I thought I'd update you all. I went into hospital in the 20/02 to have ...

Sagiegirl

•5 months ago

19 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2024

New to this

First Injection of Pegasys

At last Guys date

results

Mood stabilizers?

Open letter

Hair thinning

Potential ET diagnosis

Stem Cell transplant register search goes on…

Besremi and Rux Combined

Rebirthday

essential thrombocytosis

High platelets update….opinions please…..

Itching in Myelofibrosis

Worth switching meds?

Approved or Trials of RBC lowering drugs?

update after 5 months diagnosis of ET

travel insurance

CALR INCA033989 Antibody Trial

Sauna

The ECLIPSE PV trial- Besremi

Travel insurance

Terrible pains in my arms!

ET and norovirus

Newly diagnosed

Post ET MF - Advice Please

ET CALR

Co pay assistance exhausted for Jakafi

Association of Low-Dose Aspirin Use With Prevention of Colorectal Cancer- more good news for those of us on aspirin therapy.

Road blocks

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