Posts - MPN Voice | HealthUnlocked

MPN Voice

10,521 members • 14,536 posts

All posts for December 2022

Anybody healed their gut from acid reflux caused by aspirin?

Hi, I have PV and taking Hydroxyurea and aspirin. My heamatocrit level is around .45 - .47. I take 200mg aspiring once a day without the film/sugar coating. I...

Hi, I have PV and taking Hydroxyurea and aspirin. My heamatocrit level is aroun...

bd_97

•1 year ago

9 Replies

Azercitidine

hi. I have just had my 2nd session of Azercitidine as my ET has progressed to myleofibrosis in accelerated stage. Has anyone on this forum experienced...

hi. I have just had my 2nd session of Azercitidine as my ET has progressed to my...

Smdg

•1 year ago

10 Replies

almost 200 days post SCT update

Spurred on by Jennie’s update earlier, I thought it was high time that I wrote an update on my progress. I’m almost at 200 days post transplant. I’ve hardly...

Spurred on by Jennie’s update earlier, I thought it was high time that I wrote a...

ConniesDad

•1 year ago

20 Replies

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Curcumin formula

Some of us are taking the Curcuwin version of curcumin. A bit of info on it: This report finds a specific formulation of Curc provides the highest bioavail:...

Some of us are taking the Curcuwin version of curcumin. A bit of info on it: T...

EPguy

•1 year ago

22 Replies

Curcumin research for cancer in bone marrow

New hope for MPN and blood cancer patients from Japan https://scitechdaily.com/anti-tumor-effects-without-toxicities-researchers-use-a-spice-to-treat-cancer/

New hope for MPN and blood cancer patients from Japan https://scitechdaily.com/a...

william-Indo

•1 year ago

3 Replies

Pv and itchy

Hydroxyurea and itchyp

JoeOeil

•1 year ago

3 Replies

Prevalence of the JAK2V617F Mutation in Patients with Ischemic Stroke

Conclusion and implications: « The present study reveals a JAK2V617F mutation prevalence (12.2%) in a stroke population that is substantially higher compared...

Conclusion and implications: « The present study reveals a JAK2V617F mutation p...

Manouche

•1 year ago

7 Replies

Impact on ET of high levels of PM2.5 from air pollution

Does anyone on this forum have information or experience of the potential impact of high levels of particulate matter PM2.5 from air pollution on ET...

Does anyone on this forum have information or experience of the potential impact...

Norma1831

•1 year ago

3 Replies

Myelofibrosis

I have been on 90mcg weekly for about 2 years but have been told my dose may have to go up to 135mcg because my allele burden Is going up and my spleen has...

I have been on 90mcg weekly for about 2 years but have been told my dose may hav...

caroline_284

•1 year ago

17 Replies

Day +99

Hello friends, Well I am almost at 100 days post transplant and feeling surprisingly well under the circumstances. My check ups have been reduced to once a...

Hello friends, Well I am almost at 100 days post transplant and feeling surprisi...

Otterfield

•1 year ago

59 Replies

Another covid question Re blood clotting/high risk

So. It's finally got me... At the moment, it just feels like flu with a bad chest (not terrible, just raspy and sore). I'm 4 vaccinated so hopefully it doesn't...

So. It's finally got me... At the moment, it just feels like flu with a bad ches...

Jane8143

•1 year ago

10 Replies

What's going on

Hi hope everyone is well. I started taken Peg in October 45mg. Went to see consultant a month ago platelets down to 700 from 1100 great news. Went yesterday...

Hi hope everyone is well. I started taken Peg in October 45mg. Went to see consu...

JeniMac

•1 year ago

4 Replies

BMB JAK2 versus Blood JAK2?

Had a BMB and Blood test on same day, my BMB % JAK2 was 23% whereas my Blood JAK2 % was 30%. Can anyone please explain the difference? Which one is the most...

Had a BMB and Blood test on same day, my BMB % JAK2 was 23% whereas my Blood JAK...

Paul123456

•1 year ago

4 Replies

Clonal hematopoiesis and cardiovascular diseases: role of JAK2V617F

“Reports have demonstrated that the minuscule JAK2V617F clones with low VAF have a clinically biological impact on the cardiovascular system. In patients with...

“Reports have demonstrated that the minuscule JAK2V617F clones with low VAF have...

Manouche

•1 year ago

20 Replies

MPN Specialist

Hello, I have had an appointment scheduled for about 5 weeks now with an MPN specialist at City of Hope. They just called and switched me to another doctor. I...

Hello, I have had an appointment scheduled for about 5 weeks now with an MPN sp...

Ssssfamily

•1 year ago

14 Replies

PV Patients taking Jardiance or other SGLT2 inhibitors

Jardiance and other SGLT2 inhibitors are becoming an important treatment for diabetes, heart failure, and chronic kidney disease. This class of drugs has many...

Jardiance and other SGLT2 inhibitors are becoming an important treatment for dia...

Loooonglife

•1 year ago

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Long Term Hydrea patients?

Hi, I'd like to hear from any long term Hydrea PV/ET patients out there? I'm 74. I was diagnosed about 7 years ago with Jak2 ET. Refused Hydrea and just...

Hi, I'd like to hear from any long term Hydrea PV/ET patients out there? I'...

Jamesxyz

•1 year ago

34 Replies

Can Hydroxy Carbamide delay healing in broken bones?

I am taking Hydroxy Carbamide for ET 500mg daily and 1000 on Sundays to good effect with no problems. I have recently broken my humerus bone (2weeks ago) and...

I am taking Hydroxy Carbamide for ET 500mg daily and 1000 on Sundays to good eff...

Isabella1854

•1 year ago

7 Replies

Changing from Hydroxycarbamide to Jakavi

I am in UK and have had Primary MF for 8 years and have been taking Hydroxy all that time. Main symptom for me is high fatigue.On pretty much Maximum dose and...

I am in UK and have had Primary MF for 8 years and have been taking Hydroxy all ...

the_black_pig

•1 year ago

22 Replies

Itchy patches

Since jabbing myself with Pegasys interferon alfa2a for CALR +ET diagnosis, I've noticed the appearance of several small itchy patches on my abdomen and...

Since jabbing myself with Pegasys interferon alfa2a for CALR +ET diagnosis, I'v...

gilded

•1 year ago

8 Replies

Update 7.1 - Very Good News

Very good news from the Quantitative Analysis regarding JAK2v617f Variant Allele Frequency. JAK2 V617F Mutation Analysis by Real-time PCR...

Very good news from the Quantitative Analysis regarding JAK2v617f Variant Allele...

hunter5582

•1 year ago

63 Replies

Does an enlarged spleen cause nausea

Hi, all. I’m post Et Mf and have been taking hydroxyurea for years. Only in the past several months, I have been experiencing frequent nausea. The last time...

Hi, all. I’m post Et Mf and have been taking hydroxyurea for years. Only in the ...

Cja1956

•1 year ago

5 Replies

Update 7.0

Things have been coming along pretty well. Iron levels are gradually increasing, resulting in an increase in erythrocytes. On 10/07 at my PCP lab, HCT = 47.7%...

Things have been coming along pretty well. Iron levels are gradually increasing,...

hunter5582

•1 year ago

24 Replies

Taking pegasys while having covid

Hello,I've come down with covid after almost 3 years of avoiding it! I'm due my monthly pegasys injection today. Am waiting to hear from Guys and Thomas's team...

Hello,I've come down with covid after almost 3 years of avoiding it! I'm due my ...

Dream23

•1 year ago

7 Replies

On goin results on bomedemstat (LSD1 Inhibitor)

Hi All, I have been part of this great group for the last year or so, and although I wish none of us were here, I’m glad to have found an online community that...

Hi All, I have been part of this great group for the last year or so, and althou...

jafar09

•1 year ago

9 Replies

Nausea from Hydroxyurea

Anyone experience constant nausea from hydroxyurea and if yes, what did you do to stop the nausea? I've been on hydroxyurea for about year now. I started...

Anyone experience constant nausea from hydroxyurea and if yes, what did you do t...

ERei

•1 year ago

28 Replies

Liver enzymes up on Besremi

Hi everybody, My doctor has taken me off Besremi for a month. Keeping a close eye on my liver enzymes. I know many have said that their liver enzymes...

Hi everybody, My doctor has taken me off Besremi for a month. Keeping a cl...

Barbiebreath

•1 year ago

39 Replies

Main differences in blood tests results for ET and PV diagnosis?

Hi, I have read on here of cases where the diagnosis of ET or PV isn’t always so clear cut or where ET becomes PV and I was interested to know what the key...

Hi, I have read on here of cases where the diagnosis of ET or PV isn’t always ...

Cb1001

•1 year ago

14 Replies

dry hair

don’t know if this helps anyone lots of ladies asked about hair going very dry and brittle especially on hydroxycarbamide I have found a simple solution my...

don’t know if this helps anyone lots of ladies asked about hair going very dry a...

ChillyAsh34

•1 year ago

1 Reply

Fight MPN FORUM

The above appeared suddenly without me asking. Anyone else had same ?

Mostew

•1 year ago

2 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for December 2022

Anybody healed their gut from acid reflux caused by aspirin?

Azercitidine

almost 200 days post SCT update

Curcumin formula

Curcumin research for cancer in bone marrow

Pv and itchy

Prevalence of the JAK2V617F Mutation in Patients with Ischemic Stroke

Impact on ET of high levels of PM2.5 from air pollution

Myelofibrosis

Day +99

Another covid question Re blood clotting/high risk

What's going on

BMB JAK2 versus Blood JAK2?

Clonal hematopoiesis and cardiovascular diseases: role of JAK2V617F

MPN Specialist

PV Patients taking Jardiance or other SGLT2 inhibitors

Long Term Hydrea patients?

Can Hydroxy Carbamide delay healing in broken bones?

Changing from Hydroxycarbamide to Jakavi

Itchy patches

Update 7.1 - Very Good News

Does an enlarged spleen cause nausea

Update 7.0

Taking pegasys while having covid

On goin results on bomedemstat (LSD1 Inhibitor)

Nausea from Hydroxyurea

Liver enzymes up on Besremi

Main differences in blood tests results for ET and PV diagnosis?

dry hair

Fight MPN FORUM

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