Posts - MPN Voice | HealthUnlocked

MPN Voice

10,832 members•15,126 posts

All posts for December 2021

Covid

Hi all Hope your all keeping safe and well…. I am now in a house of covid!!! My little boy tested positive on Tuesday so I tested my 2 other children, one of...

Hi all Hope your all keeping safe and well…. I am now in a house of covid!!! M...

Dazakella2010

•3 years ago

44 Replies

How does Besremi work?

I read all the material on their website, but I'm still not sure how Besremi impacts the bone marrow in PV. Normally interferon suppress your immune system,...

I read all the material on their website, but I'm still not sure how Besremi imp...

Elizka

•3 years ago

2 Replies

Found this easy to read piece today:

https://patientpower.info/ash-2021-essential-thrombocythemia-treatment-updates/?ap=590&utm_source=e-News+Subscribers&utm_campaign=e2a75a3157-EMAIL_CAMPAIGN_12_1

https://patientpower.info/ash-2021-essential-thrombocythemia-treatment-updates/?...

IrishHiker

•3 years ago

3 Replies

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Monthly blog dedicated to young people living with MPNs Alice’s third blog: In Conversation with Prof Claire Harrison

This month Alice chats with Professor Claire Harrison, Prof of Myeloproliferative Neoplasms and Clinical Director at Guy’s and St Thomas’ Hospital (GSTT) in...

This month Alice chats with Professor Claire Harrison, Prof of Myeloproliferativ...

Mazcd

Partner•3 years ago

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COVID-19 Mortality, Hospitalization Risk Higher in Patients With Blood Cancers

We've discussed this often here. This is the latest from ASH 2021. Of interest: <<Patients with MPN and plasma cell dyscrasia had less severe COVID-19...

We've discussed this often here. This is the latest from ASH 2021. Of interest...

EPguy

•3 years ago

4 Replies

Protagonist Therapeutics Presents Updated Phase 2 Rusfertide Data

From ASH 2021: This agent controls HCT without PLB and reports good tolerance....

From ASH 2021: This agent controls HCT without PLB and reports good tolerance......

EPguy

•3 years ago

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Excess Mortality Higher in Younger Patients With MPNs vs Older Patients

Another ASH 2021 report. <<(this result) could be linked to age-biased risk assessment and guidelines that recommend lower intensity treatment for young...

Another ASH 2021 report. <<(this result) could be linked to age-biased risk a...

EPguy

•3 years ago

7 Replies

Update

HI my friends! I have now seen my MPN specialist twice. I was back to see him in Nashville on November 29. My diagnosis has changed from ET to PV which is what...

HI my friends! I have now seen my MPN specialist twice. I was back to see him in...

Wewo01

•3 years ago

9 Replies

Booster

Does anyone have any definitive information about when those of us who have had three primary covid doses should be seeking to get our boosters? Best wishes...

Does anyone have any definitive information about when those of us who have had ...

beetle

•3 years ago

22 Replies

Weight loss

Has anyone else on Pegasys lost weight. I seem to be losing 1lb a week and have now lost 11lbs in the last few months even though I’m eating the same amount as...

Has anyone else on Pegasys lost weight. I seem to be losing 1lb a week and have ...

Jynx93

•3 years ago

3 Replies

Long term using h.u

Hello. I am on peg for 1 year and it works great but my spleen get big. before I was on h.u for 5 years.My hematologist try to combined peg and h. u. I wonder...

Hello. I am on peg for 1 year and it works great but my spleen get big. before I...

eladhil

•3 years ago

1 Reply

ASH 2021 -- Bomedemstat IMG-7289 for ET

More abstracts. This agent continues to look promising in Ph 2 trial....

EPguy

•3 years ago

1 Reply

ASH 2021-- White Blood Counts Key to Managing Thrombotic Events in Polycythemia Vera

Another post there. https://www.cancernetwork.com/view/white-blood-counts-key-to-detecting-thrombotic-events-in-polycythemia-vera <<there was an association...

Another post there. https://www.cancernetwork.com/view/white-blood-counts-key-to...

EPguy

•3 years ago

4 Replies

Extreme reactions to vaccines

Hello everyone, I’ve just received my flu and pneumonia vaccine and have experienced really nasty side effects. These start roughly 12 hours after the...

Hello everyone, I’ve just received my flu and pneumonia vaccine and have experi...

JojoWonder

•3 years ago

22 Replies

ASH 2021 -- cytopenic myelofibrosis

I've been checking out the Hematology conference. For cytopenic myelofibrosis a Phase 3 trial PERSIST-2 reports pacritinib has advantages over Rux....

I've been checking out the Hematology conference. For cytopenic myelofibrosis a...

EPguy

•3 years ago

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Pegasys and insomnia

I’m now on a maintenance dose of pegasys. Started pegasys in 2016. In the Early years within 30mins of injecting I felt very tired and experienced a good deep...

I’m now on a maintenance dose of pegasys. Started pegasys in 2016. In the Early ...

EleanorPV

•3 years ago

4 Replies

Have ET for last five years, pregnant and on aspirin…need advice!!

Hello everyone, I am 23 weeks pregnant on aspirin 100mg. Although my platelets are in normal range after getting pregnant, which is due to pregnancy off...

Hello everyone, I am 23 weeks pregnant on aspirin 100mg. Although my platelets ...

mustabshra

•3 years ago

4 Replies

Loss of Smell, Help???

I have a trouble smelling everyday. My sense of smell it come and it goes. Is it normal for a person who have a alergic rhinitis to experience this? but I...

I have a trouble smelling everyday. My sense of smell it come and it goes. Is it...

anonymous_1985

•3 years ago

2 Replies

Sarcoma and my Daughter

Afternoon my friends, Have not really written very much on here of Late, sorry about that, but as some of you might remember my Daughter was diagnosed last...

Afternoon my friends, Have not really written very much on here of Late, sorry a...

Superwoman

•3 years ago

17 Replies

New to this site. We

72 year old make, diagnosed 3 years ago but have probably had Igor 6. Tinnitus has got much louder since I started in Hydroxyurea. Is this common?

72 year old make, diagnosed 3 years ago but have probably had Igor 6. Tinnitus h...

Jim1949

•3 years ago

9 Replies

72 year old make

Is seems like my tinnitus is getting louder since I’ve been taking Hydroxyurea. I have to wear hearing aids and use a white noise machine to sleep. Anyone...

Is seems like my tinnitus is getting louder since I’ve been taking Hydroxyurea. ...

Jim1949

•3 years ago

2 Replies

Weight loss pills while on medication

Hi all, I was just wondering if anyone has taken Keto weight loss tablets while on Hydroxycarbamide for ET. There is a new product out called Best Health Keto...

Hi all, I was just wondering if anyone has taken Keto weight loss tablets while ...

beckyluck

•3 years ago

9 Replies

Summary Paper from Drs, Claire N. Harrison and Donal P. McLornan

Nice summary I just came across from some of the experts. I've included some outtakes I found notable. Lots more in there on R&D for MF....

Nice summary I just came across from some of the experts. I've included some o...

EPguy

•3 years ago

7 Replies

Do I start Interferon?

Hi everyone I have always been under a certain amount of pressure to start meds for ET cMPL but have resisted up to now. I have had two high platelet counts...

Hi everyone I have always been under a certain amount of pressure to start meds ...

Quercus53

•3 years ago

41 Replies

Booster jab

Has anyone (in the U.K.) got their under 18 jabbed with the booster.? Just tried with my 17 year old who had vaccines 1 and 2 ‘early’ because of me. First they...

Has anyone (in the U.K.) got their under 18 jabbed with the booster.? Just tried...

Ebot

•3 years ago

11 Replies

Proving Polycythaemia Vera (PV) with/without WHO2016 criteria

I’m seeking any guidance on Polycythaemia Vera (PV) and the application of WHO2016 criteria in its prognosis or lack thereof. My Dr believes I have it,...

I’m seeking any guidance on Polycythaemia Vera (PV) and the application of WHO20...

Tropicaldays

•3 years ago

6 Replies

Myleofibrosis

Thank you to everyone who replied to my post I had no idea that skin cancers could become an issue or weight gain. I see my doctor next week so will ask her...

Thank you to everyone who replied to my post I had no idea that skin cancers cou...

Stripecat

•3 years ago

3 Replies

New , looking for advice and a friend.

Hi all I’m new here but I would like to see if anyone could give me advice or any guidance with polycynthia Vera , my red cell are high so is my hemoglobin...

Hi all I’m new here but I would like to see if anyone could give me advice or a...

Hometeam2016

•3 years ago

9 Replies

Myleofibrosis

Does anyone out there have myleofibrosis and take ruxolitinib. Would be interested in how your doing and if you have had any side effects

Does anyone out there have myleofibrosis and take ruxolitinib. Would be interest...

Stripecat

•3 years ago

16 Replies

Rux vs Vaccine

I'm planning to start Besremi soon and may consider combo therapy with Rux as my Dr recommends Rux. If so I would want Rux for its anti inflammatory benefits...

I'm planning to start Besremi soon and may consider combo therapy with Rux as my...

EPguy

•3 years ago

16 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for December 2021

Covid

How does Besremi work?

Found this easy to read piece today:

Monthly blog dedicated to young people living with MPNs Alice’s third blog: In Conversation with Prof Claire Harrison

COVID-19 Mortality, Hospitalization Risk Higher in Patients With Blood Cancers

Protagonist Therapeutics Presents Updated Phase 2 Rusfertide Data

Excess Mortality Higher in Younger Patients With MPNs vs Older Patients

Update

Booster

Weight loss

Long term using h.u

ASH 2021 -- Bomedemstat IMG-7289 for ET

ASH 2021-- White Blood Counts Key to Managing Thrombotic Events in Polycythemia Vera

Extreme reactions to vaccines

ASH 2021 -- cytopenic myelofibrosis

Pegasys and insomnia

Have ET for last five years, pregnant and on aspirin…need advice!!

Loss of Smell, Help???

Sarcoma and my Daughter

New to this site. We

72 year old make

Weight loss pills while on medication

Summary Paper from Drs, Claire N. Harrison and Donal P. McLornan

Do I start Interferon?

Booster jab

Proving Polycythaemia Vera (PV) with/without WHO2016 criteria

Myleofibrosis

New , looking for advice and a friend.

Myleofibrosis

Rux vs Vaccine

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