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MPN Voice

10,432 members • 14,380 posts

All posts for February 2021

People with Polycythemia. A Rare Illnesses Forum.

Just seen this on IG if anyone with Polycythemia like me is interested. https://www.instagram.com/p/CLz6u1aqUXC/?igshid=1qo1cmq4ohwbh Hope this is ok?

Just seen this on IG if anyone with Polycythemia like me is interested. https:/...

MarcusAurelius62

•3 years ago

1 Reply

MPN Specialist Kent

I have PV JAK2 diagnosed 2017. I have been under the care of Maidstone Hospital but would like a second opinion. I live in Maidstone Kent. How do I find an MPN...

I have PV JAK2 diagnosed 2017. I have been under the care of Maidstone Hospital ...

Heather270240

•3 years ago

34 Replies

End of hot flushes?

Hi every one. Hope you’re coping with this awful pandemic..light at the end of tunnel now hopefully. Almost a year since being diagnosed with this ET by phone!...

Hi every one. Hope you’re coping with this awful pandemic..light at the end of t...

Cokopops

•3 years ago

9 Replies

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Live vaccine with hydroxyurea ?

I have et jak 2 positive. I am on hydroxyurea 500 mg every three days. My understanding is that I cannot have a live vaccine and therefore not the Johnson and...

I have et jak 2 positive. I am on hydroxyurea 500 mg every three days. My unders...

Island-Lady

•3 years ago

18 Replies

Therapeutic Cancer Vaccination With a Peptide Derived From the Calreticulin Exon 9 Mutations Induces Strong Cellular Immune Responses

« Conclusion: Therapeutic cancer vaccination with peptide vaccines derived from mutant CALR with montanide as an adjuvant, is safe and tolerable. The vaccines...

« Conclusion: Therapeutic cancer vaccination with peptide vaccines derived from ...

Manouche

•3 years ago

7 Replies

Re: WARWICK's ASCT Journey Begins Today...

Afternoon all... Warwick has managed to POST a reply on MATES, and if any of you can, I am sure that he would love to say hi... He's not feeling terribly...

Afternoon all... Warwick has managed to POST a reply on MATES, and if any of you...

socrates_8

•3 years ago

37 Replies

New ET member

Greetings everyone. Just by way of introduction I'm almost 69 and was first "unofficially diagnosed with ET in 2010. At the time the physician mentioned I...

Greetings everyone. Just by way of introduction I'm almost 69 and was first "uno...

Hidden

•3 years ago

12 Replies

Headaches every day

Greetings fellow ET sufferers. I was started on hydroxycarbamide 500mg about a month ago...no problems on that dose. About 2 weeks ago the specialist increased...

Greetings fellow ET sufferers. I was started on hydroxycarbamide 500mg about a m...

Hidden

•3 years ago

14 Replies

PV symptoms

Hi everyone.. I’m just going to ramble .... I get up every morning first off feeling tired already then as soon as I take a drink of water, nausea washes...

Hi everyone.. I’m just going to ramble .... I get up every morning first off f...

Hidden

•3 years ago

2 Replies

Multiple Presentations - something for everyone! Must read/watch!

https://mpninfo.org/conferences/2021-conference/presentations/

Paul123456

•3 years ago

15 Replies

Sensitivity of driver mutation tests for CALR and MPL - not sure if I'm confident

Possible ET triple-negative. Mildly elevated platelets (429-455) for 10 years. All 3 driver mutations came back negative. Spoke with my MPN specialist about...

Possible ET triple-negative. Mildly elevated platelets (429-455) for 10 years. A...

cmc_ufl

•3 years ago

16 Replies

Covid Vaccination side effects

Has anyone else experienced side effects from getting a covid vaccine? I got my first shot of the Pfizer vaccine a week ago. Ever since then I have been...

Has anyone else experienced side effects from getting a covid vaccine? I got my...

Amyhikes

•3 years ago

13 Replies

Newly Diagnosed & Overwhelmed!

Hi everyone! I've been reading some older posts and am already feeling better, as everyone seems so supportive. It's also nice to feel like you're not alone...

Hi everyone! I've been reading some older posts and am already feeling better, a...

emily914

•3 years ago

11 Replies

Mpn diagnoses.

Diagnosed 6 months ago with Mpl positive ET.on aspirin and 1gm. Hydroxycarbamide.have since read online that mpl et diagnoses should probably be diagnosed as...

Diagnosed 6 months ago with Mpl positive ET.on aspirin and 1gm. Hydroxycarbamide...

Bmj63

•3 years ago

5 Replies

Going crazy!

Looking for support please 🙏 I'm 45, had hysterectomy 2016 due to endometriosis, so 6 months ago when i started feeling rubbish, i thought it was just the...

Looking for support please 🙏 I'm 45, had hysterectomy 2016 due to endometriosis...

gr8kids

•3 years ago

14 Replies

PTG-300 Clinical Trial Status

Unfortunately I did not meet parameters for the PTG-300 clinical trial for PV treatment. You have to have had a minimum of 3 phlebotomies in 28 weeks. While...

Unfortunately I did not meet parameters for the PTG-300 clinical trial for PV tr...

hunter5582

•3 years ago

34 Replies

Calr type

How do I know which type of calr that I have? I looked through my BMB and didn't see anything.

How do I know which type of calr that I have? I looked through my BMB and didn'...

Whitehair51

•3 years ago

2 Replies

Do we think shielding might continue BEYOND March?

Does anyone have an opinion from a medical practitioner about whether the shielding programme might continue beyond the end of March? I have the letter that...

Does anyone have an opinion from a medical practitioner about whether the shield...

Bakerloo73

•3 years ago

8 Replies

Condolences

So sorry for your loss. Be kind to yourself x

Mysi

•3 years ago

Be the first to reply

Just getting used to finding out that I have ET, now also have early mylofibrosis

Hi All, I got my BMB back today, things are NQR and I have early mylofibrosis. Bit of a shock... was just adjusting to ET. HU has been increased. Just wanted...

Hi All, I got my BMB back today, things are NQR and I have early mylofibrosis. B...

Cabert

•3 years ago

32 Replies

26 with possible PV

Hello, First of I just wanted to say thank you for taking the time to look at this if you do, I’m just very confused and not quite sure what information to...

Hello, First of I just wanted to say thank you for taking the time to look at th...

HereForAWhile

•3 years ago

35 Replies

Masked PV

Hello everyone , I haven’t posted anything on this forum for sometime. I was diagnosed in 2019 with ET my platelets were about 600 . My symptoms being very...

Hello everyone , I haven’t posted anything on this forum for sometime. I was dia...

Kiki64

•3 years ago

8 Replies

Hydration and Haemoglobin / Haemotocrit Levels

Does anyone know how much hydration can affect haemoglobin and haemoticrit levels? Ever since the prospect of PV was raised I have been sure to be very well...

Does anyone know how much hydration can affect haemoglobin and haemoticrit level...

Lettie_WP

•3 years ago

5 Replies

Sad news

It has taken me some time to write this... but I hope my husband’s journey with MPN is perceived overall a message hope to others. He was diagnosed with PV...

It has taken me some time to write this... but I hope my husband’s journey with ...

Fika500

•3 years ago

82 Replies

Shielding letter

Hi I’ve just been sent a shielding letter which has also allowed me to have first vaccination . When do I have to shield until because I can’t work from home...

Hi I’ve just been sent a shielding letter which has also allowed me to have firs...

Lizzy19

•3 years ago

3 Replies

Reconstructing the Lineage Histories and Differentiation Trajectories of Individual Cancer Cells in Myeloproliferative Neoplasms

« This suggests that peripheral blood monitoring may not accurately assess JAK2 mutant allele burden, particularly in megakaryocyte-erythroid lineage cells and...

« This suggests that peripheral blood monitoring may not accurately assess JAK2 ...

Manouche

•3 years ago

3 Replies

Has anyone used PALS (Patient Advice and Liaison Service)

I know a few of us are still no further regarding getting added to shielding list and obtaining vaccine. I have been backwards and forwards between GP and...

I know a few of us are still no further regarding getting added to shielding lis...

Foss33

•3 years ago

12 Replies

Phizer Vaccine - has anyone had any side effects with any medications that MPN patients take such as HU, blood thinners?

I go for my first dose of the phizer vaccine tomorrow and noticed that many people have received their first jab already with minimal side effects. I asked my...

I go for my first dose of the phizer vaccine tomorrow and noticed that many peop...

Bainbridge

•3 years ago

7 Replies

Dentist

Hi I had a check up at dentist other day has I was pass my due date which I didn't know but glad I went has dentist seen some white on inside of my cheeks and...

Hi I had a check up at dentist other day has I was pass my due date which I didn...

Jody00

•3 years ago

12 Replies

Misunderstood.

Eerr... I'm feeling a little uneasy writing this post... I'm just going to say it since it's been a nagging voice in my head for years now. I'm sure lots of...

Eerr... I'm feeling a little uneasy writing this post... I'm just going to say i...

RobPV

•3 years ago

64 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2021

People with Polycythemia. A Rare Illnesses Forum.

MPN Specialist Kent

End of hot flushes?

Live vaccine with hydroxyurea ?

Therapeutic Cancer Vaccination With a Peptide Derived From the Calreticulin Exon 9 Mutations Induces Strong Cellular Immune Responses

Re: WARWICK's ASCT Journey Begins Today...

New ET member

Headaches every day

PV symptoms

Multiple Presentations - something for everyone! Must read/watch!

Sensitivity of driver mutation tests for CALR and MPL - not sure if I'm confident

Covid Vaccination side effects

Newly Diagnosed & Overwhelmed!

Mpn diagnoses.

Going crazy!

PTG-300 Clinical Trial Status

Calr type

Do we think shielding might continue BEYOND March?

Condolences

Just getting used to finding out that I have ET, now also have early mylofibrosis

26 with possible PV

Masked PV

Hydration and Haemoglobin / Haemotocrit Levels

Sad news

Shielding letter

Reconstructing the Lineage Histories and Differentiation Trajectories of Individual Cancer Cells in Myeloproliferative Neoplasms

Has anyone used PALS (Patient Advice and Liaison Service)

Phizer Vaccine - has anyone had any side effects with any medications that MPN patients take such as HU, blood thinners?

Dentist

Misunderstood.

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