Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for January 2022

Hydroxycarbamide side effects.

I’ve just seen my haematologist today, and she has said that she will send me for a brain scan, and a camera for my stomach. Reasons I’ve had a few really...

I’ve just seen my haematologist today, and she has said that she will send me fo...

10061950

•2 years ago

20 Replies

What to Know About Polycythemia Vera and Treatment Options

« For those that have not had a chance to use interferons, this is a little different experience than those that just used interferon in the distant past. I’m...

« For those that have not had a chance to use interferons, this is a little diff...

Manouche

•2 years ago

1 Reply

Higher platelets and RDW 1 mth on 500 mg hydroxyurea and aspirin daily

On Hydroxyurea for 1 month platelets went from 818 to 823 RDW went from 14.8 to 15.6 Jak2 V617F positive quantitative value 10.8 I seem to be going in the...

On Hydroxyurea for 1 month platelets went from 818 to 823 RDW went from 14.8 to ...

patriciapugliese

•2 years ago

17 Replies

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

I have just seen my haematologist and she said I will have to have a brain scan and a camera because I have bad headaches and have been

ET mpl .

10061950

•2 years ago

3 Replies

Platelets on the rise

I’m ET, triple negative, and take HU alternating 500 and 1000 mg daily. My platelets have nicely stayed below 400 with that med for three years but in the last...

I’m ET, triple negative, and take HU alternating 500 and 1000 mg daily. My plate...

WileyFrench

•2 years ago

8 Replies

4th jab booster turbo update.

Despite getting pinged when I had the 4th booster I had some very good news today after my regular blood test. My antibodies have now taken off! Also my...

Despite getting pinged when I had the 4th booster I had some very good news toda...

Jonnymitts

•2 years ago

18 Replies

Hoffmann-La Roche Pegasys Alternative

Hi! I recently found out that Hoffmann-La Roche discontinued Pegasys and the worldwide rights for it were acquired by pharma&. Does anyone know what new brand...

Hi! I recently found out that Hoffmann-La Roche discontinued Pegasys and the wor...

Dovakin

•2 years ago

9 Replies

Spleen Stiffness correlates to fibrosis in MF

I came across this study. Using a type of ultrasound, "point shear wave elastography" (pSWE) spleen stiffness can be measured. This is distinct from the...

I came across this study. Using a type of ultrasound, "point shear wave elastog...

EPguy

•2 years ago

Be the first to reply

Covid guidance

Hi all…. Thought this might be helpful...

Dazakella2010

•2 years ago

4 Replies

Ports?

Good morning, I have Polycythemia Vera. I am having regular phlebotomy and do not have the best veins. I am wondering if anyone out there, who is having...

Good morning, I have Polycythemia Vera. I am having regular phlebotomy and do no...

Bluetoday1

•2 years ago

6 Replies

Title ??

Hi I am ET Jak2 + enlarged spleen & mild fibrosis in liver & bone marrow,I’m off to have biopsy on thyroid whenever I make an appointment 🤷‍♀️Prioritise...

Hi I am ET Jak2 + enlarged spleen & mild fibrosis in liver & bone marrow,I’m off...

Nanasuki60

•2 years ago

3 Replies

Pegasys Copay!

Looking to see if anyone has any resources... So, I've been on Pegasys for about two years now ( PV diagnosed 6 years ago) and my allele burden has gone from...

Looking to see if anyone has any resources... So, I've been on Pegasys for abou...

DN515

•2 years ago

19 Replies

ET AND DAILY Aspirin

Hi All I was diagnosed with ET just before Xmas..!! I m 70 so high risk. My haematologist rang me to tell me to take Aspirin 75mg daily which I tried to do...

Hi All I was diagnosed with ET just before Xmas..!! I m 70 so high risk. My hae...

Catlips

•2 years ago

18 Replies

Reaction to Covid vaccine

Anyone else have a reaction to vaccine 1 or 2? I’m having a battle to try and get my 3rd vaccine. Spoken to the only Covid allergy specialist in Scotland. I’m...

Anyone else have a reaction to vaccine 1 or 2? I’m having a battle to try and ge...

EleanorPV

•2 years ago

12 Replies

General ET questions

Hi everyone. I have only recently joined this forum. I was diagnosed with ET in 2004 and have been on aspirin and HU since the beginning with varying doses of...

Hi everyone. I have only recently joined this forum. I was diagnosed with ET in ...

Smdg

•2 years ago

4 Replies

PV and CML?

I was diagnosed with PV, Jak 2+ several years ago. I have been here on MPN Voice for most of that time. I appreciate how everyone shares their experiences and...

I was diagnosed with PV, Jak 2+ several years ago. I have been here on MPN Voice...

Jsb45

•2 years ago

6 Replies

Newly diagnosed - ET

Newly diagnosed with ET - CALR type 1 mutation. Found elevated platelets (~600) in routine blood work for an annual physical. No other symptoms presenting....

Newly diagnosed with ET - CALR type 1 mutation. Found elevated platelets (~600) ...

dbus1417

•2 years ago

25 Replies

Is there a link between IVF and ET?

I had (successful) IVF treatment in 1994 due to PCOS. In 2005 I was diagnosed with ET. Subsequently JAK2 mutation was identified.

I had (successful) IVF treatment in 1994 due to PCOS. In 2005 I was diagnosed w...

Peachjoy

•2 years ago

2 Replies

alternative to tablets

My mother was diagnosed yesterday with MPN (ET) She has been told that the only option is ‘big’ tablets . She has stomach problems and cannot even tolerate...

My mother was diagnosed yesterday with MPN (ET) She has been told that the only...

Mimynicholas

•2 years ago

15 Replies

Adult blood cancer-causing mutations occur in early childhood

The paper, published today (19 January 2022) in Nature, suggests that these mutations will cause blood cells to multiply at different rates in different...

The paper, published today (19 January 2022) in Nature, suggests that these muta...

Manouche

•2 years ago

20 Replies

Thank you

Many thanks for all your replies. Very positive, informative and helpful. All the very best Lance

Many thanks for all your replies. Very positive, informative and helpful. All th...

Carpangler

•2 years ago

Be the first to reply

Started hydroxicarbamide

After having the prescription in draw for 2 years I have at last decided it’s the right time to take ( it’s still in date !) took first last night I am still...

After having the prescription in draw for 2 years I have at last decided it’s th...

Mostew

•2 years ago

36 Replies

MF and Pacritinib

I've been looking at the Twitter feeds for ASH 2021 and others....

EPguy

•2 years ago

2 Replies

MPN and Covid vaxes

EPguy

•2 years ago

Be the first to reply

Myelo fibrosis

Hi I am in the intermediate stage, level 2 of the disease and go onto ruxolitinib tomorrow. I have looked on several forums and never managed to connect with...

Hi I am in the intermediate stage, level 2 of the disease and go onto ruxolitini...

Carpangler

•2 years ago

11 Replies

SIDE EFFECTS OF ANAGRELIDE

Update from previous post. Saw Haematologist yesterday, unable to have Interferon, only option open to me is Anagrelide. What are your experiences of this...

Update from previous post. Saw Haematologist yesterday, unable to have Interfer...

Heather270240

•2 years ago

18 Replies

INF study From China, type of INF can matter

Came across this one. https://www.frontiersin.org/articles/10.3389/fonc.2021.797825/full It used "Peg-IFN-a-2b; PegBeron, Y shape, 40 kDa, Xiamen Amoytop...

Came across this one. https://www.frontiersin.org/articles/10.3389/fonc.2021.79...

EPguy

•2 years ago

5 Replies

State Licenses and MPN Specialists or Treatment Across Borders

Hi Everyone, My MPN doc just told me that he may not be able to continue treating me in the manner we have grown accustomed to after February 2022. I have...

Hi Everyone, My MPN doc just told me that he may not be able to continue treatin...

gvibes

•2 years ago

7 Replies

Red wine

Is a glass of red wine a day helpful or harmful for Polycythemia Vera? I’ve read that resveratrol might affect the JAK2 mutated cells.

Is a glass of red wine a day helpful or harmful for Polycythemia Vera? I’ve rea...

Dan73

•2 years ago

13 Replies

More INF reports, PEG vs Besremi, CMR vs progression

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5421384/ CMR: Complete molecular response, PMR: Partial... In this report for PEG it tracks for up to 7 years....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5421384/ CMR: Complete molecular re...

EPguy

•2 years ago

11 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2022

Hydroxycarbamide side effects.

What to Know About Polycythemia Vera and Treatment Options

Higher platelets and RDW 1 mth on 500 mg hydroxyurea and aspirin daily

I have just seen my haematologist and she said I will have to have a brain scan and a camera because I have bad headaches and have been

Platelets on the rise

4th jab booster turbo update.

Hoffmann-La Roche Pegasys Alternative

Spleen Stiffness correlates to fibrosis in MF

Covid guidance

Ports?

Title ??

Pegasys Copay!

ET AND DAILY Aspirin

Reaction to Covid vaccine

General ET questions

PV and CML?

Newly diagnosed - ET

Is there a link between IVF and ET?

alternative to tablets

Adult blood cancer-causing mutations occur in early childhood

Thank you

Started hydroxicarbamide

MF and Pacritinib

MPN and Covid vaxes

Myelo fibrosis

SIDE EFFECTS OF ANAGRELIDE

INF study From China, type of INF can matter

State Licenses and MPN Specialists or Treatment Across Borders

Red wine

More INF reports, PEG vs Besremi, CMR vs progression

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive