Posts - MPN Voice | HealthUnlocked

MPN Voice

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All posts for September 2022

Keeping Interferon refrigerated

Hi, I've recently started taking Peginterferon alfa-2a, and I keep it in my fridge because that's what the instructions say. I'm going to visit my girlfriend...

Hi, I've recently started taking Peginterferon alfa-2a, and I keep it in my frid...

little_oblivion

•2 years ago

5 Replies

Day +28 and longing to go home

I fully intended to keep you all updated as my transplant progressed but it didn't work out that way! Honestly this is the toughest thing I have ever done. I...

I fully intended to keep you all updated as my transplant progressed but it didn...

Otterfield

•2 years ago

62 Replies

Bomedemstat in Patients With Polycythemia Vera

This is a Phase 2 open label study of an orally administered LSD1 inhibitor, bomedemstat (IMG-7289), in patients with polycythemia vera. This study...

This is a Phase 2 open label study of an orally administered LSD1 inhibitor, bo...

Manouche

•2 years ago

7 Replies

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covid booster and IFN injection on same day?

Hi all, just a quickie if anyone is listening re-the above. I may have the chance of getting my covid booster, flu vaccine tomorrow but it would actually be...

Hi all, just a quickie if anyone is listening re-the above. I may have the chan...

Grendall

•2 years ago

11 Replies

ET & Covid

Hi all..I was diagnosrd with ET and Jak2 positive and prescribed daily 500mg Hydroxycarbamide and 75mg aspirin..platelets 6 weeks ago at 565. I have just...

Hi all..I was diagnosrd with ET and Jak2 positive and prescribed daily 500mg Hyd...

Alfiesarah

•2 years ago

26 Replies

stroke at age 39 then ET diagnosis Jak2+

7 months post major stroke. I currently take HU 1g daily for 5 days then 500mg for 2 days. Also clopidogrel atorvastatin gabapentin codeine and paracetamol....

7 months post major stroke. I currently take HU 1g daily for 5 days then 500mg ...

ETMum

•2 years ago

7 Replies

Ruxolitnib - vertigo attack

has anyone had a vertigo attack after a long haul flight when taking ruxolitnib? We flew to mexico todays later on an excursion my husband had a terrible...

has anyone had a vertigo attack after a long haul flight when taking ruxolitnib?...

tracey13

•2 years ago

10 Replies

covid booster

Hi I live in Northern Ireland I was wondering what everyone’s status is with regard to covid boosters. I have had my 2 primary vaccines and 1 booster last...

Hi I live in Northern Ireland I was wondering what everyone’s status is with reg...

Roxy1959

•2 years ago

24 Replies

Covid Booster

I have just seen on a MPN Facebook post that some people are being advised to get blood tests following getting the vaccine to check platelet levels. Have...

I have just seen on a MPN Facebook post that some people are being advised to ge...

Bluesloth1

•2 years ago

26 Replies

what a surprise!

I had a blood test last week. Rang up today for results and was told platelets. Up to 645 . So I rang Heamo nurse to discuss wether I need an earlier...

I had a blood test last week. Rang up today for results and was told platelets...

Mostew

•2 years ago

4 Replies

For Pv1955;

I've send you a message in "Chat".

girlygirl11

•2 years ago

1 Reply

karyotyping results

For those interested, this is the report of the genetic karyotyping. ARRAY REPORT SUMMARY: Clonal copy number gain of chromosome 9 and loss of 20q11.23 to...

For those interested, this is the report of the genetic karyotyping. ARRAY RE...

artydutch

•2 years ago

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bad mouth sore

Hello friends, I was wondering if anyone here with PV has had mouth sores and how you’ve gotten some relief. I’m suffering terribly over a week now , I’ve...

Hello friends, I was wondering if anyone here with PV has had mouth sores and h...

Ggrana3192

•2 years ago

8 Replies

Anyone with ET use Besremi?

Pegasys is causing me significant liver enzyme increases. I have high risk ET, CALR-1 and resistant to Hydrea. Pegasys has worked well for past 8 years but...

Pegasys is causing me significant liver enzyme increases. I have high risk ET, ...

Mountainbiker12

•2 years ago

6 Replies

How IFN targets Jak2 mutation

A fairly recent report discusses how IFN works against the mutation. I posted in a thread, but seems worth a top post. It's complex stuff but seems...

A fairly recent report discusses how IFN works against the mutation. I posted i...

EPguy

•2 years ago

17 Replies

Hydrea contains Lactose, could it affect Lactose Tolerance?

Recently member Winchie posted on GI improvements while taking HU, noting being lactose intolerant prior to taking HU. This is a great result....

Recently member Winchie posted on GI improvements while taking HU, noting being ...

EPguy

•2 years ago

2 Replies

Interferon Alpha 2-a (PEG) vs 2-b,(Bes) exactly what's the diff?

I posted this image recently, but here it's in a new context. For those who are curious exactly how 2-a and 2-b IFNs differ (I posted inside another thread...

I posted this image recently, but here it's in a new context. For those who a...

EPguy

•2 years ago

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Autumn Covid Booster

Got an NHS text this week, inviting me to book my autumn Covid booster. Went online and got a next day booking at a local pharmacy, who offered me a flu jab...

Got an NHS text this week, inviting me to book my autumn Covid booster. Went o...

AndyT

•2 years ago

1 Reply

insomnia despite good sleep hygiene

thank you in advance for help. I got diagnosed with ET JAK2 in January and about a year prior I had terrible time sleeping. Does insomnia go with MPN...

thank you in advance for help. I got diagnosed with ET JAK2 in January and about...

Pounds11

•2 years ago

10 Replies

Blood clots and bruises

Hi, just wanted to know if anyone can shed any light on the above. I have always had pronounced veins in the back of my knees as such (not varicose level) But...

Hi, just wanted to know if anyone can shed any light on the above. I have alway...

Grendall

•2 years ago

15 Replies

brain fog

I’d love to know how usual it is to have brain fog when on Hydroxycarbamide

April-May

•2 years ago

27 Replies

Potential Future Avenues for JAK2 Inhibitor Development and Alternative Therapeutic Approaches

« While current JAK2 inhibitors in clinical development all act via ATP competitive binding to the active conformation of the JAK2 kinase domain (type 1...

« While current JAK2 inhibitors in clinical development all act via ATP competit...

Manouche

•2 years ago

1 Reply

Update from top MON Specialists

https://www.vjhemonc.com/event/mpn-sessions-key-updates-from-the-2022-texas-mpn-workshop/ Highlight from MPN 2022 meeting

https://www.vjhemonc.com/event/mpn-sessions-key-updates-from-the-2022-texas-mpn-...

william-Indo

•2 years ago

1 Reply

Hydroxyurea wait time

Has anyone taking Hydroxyurea for ET felt better (less fatigue)in as little as 2days? Seems as if it worked for me that way, or else psychosomatic response....

Has anyone taking Hydroxyurea for ET felt better (less fatigue)in as little as 2...

Jazzman7

•2 years ago

9 Replies

A month on ruxolitinib/Jakafi

I had blood work this afternoon after my first five weeks on ruxolitinib. The key numbers are now all at or near normal: HCT 39.5, RBC 5.16, PLT 385, WBC...

I had blood work this afternoon after my first five weeks on ruxolitinib. The ke...

sbs_patient

•2 years ago

5 Replies

ET and dental treatment

Hi all Am due to have a tooth out, am seeing consultant in 10 days....my dentist refused to do treatment as on aspirin and hydroxycarmabide. Has anyone else...

Hi all Am due to have a tooth out, am seeing consultant in 10 days....my dentis...

SazzaC

•2 years ago

36 Replies

Impaired tumor surveillance in JAK2V617F MPN

»In conclusion, our findings suggest that Natural Killer cells have an immature profile with deficient cytotoxicity that may lead to impaired tumor...

»In conclusion, our findings suggest that Natural Killer cells have an immature...

Manouche

•2 years ago

7 Replies

Knee pain/restless legs at night

I have a recent diagnosis of PV, I'm wondering if anyone else experiences aggrivating pain in the knees at night and restless legs? It's becoming quite...

I have a recent diagnosis of PV, I'm wondering if anyone else experiences aggriv...

J12VR

•2 years ago

3 Replies

genetic karyotyping and attending MPN London

Hi All, I saw my haematologist yesterday for the results of the karyotyping genetics. I have not had a copy of the report yet, but verbally he told me that...

Hi All, I saw my haematologist yesterday for the results of the karyotyping gene...

artydutch

•2 years ago

13 Replies

CofCoffCoffeCoffee

Cardamom has a good shake of iron, potassium, and fiber and has been shown to help with stomach and intestinal issues such as heartburn and constipation. For...

Cardamom has a good shake of iron, potassium, and fiber and has been shown to he...

Mostew

•2 years ago

1 Reply

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2022

Keeping Interferon refrigerated

Day +28 and longing to go home

Bomedemstat in Patients With Polycythemia Vera

covid booster and IFN injection on same day?

ET & Covid

stroke at age 39 then ET diagnosis Jak2+

Ruxolitnib - vertigo attack

covid booster

Covid Booster

what a surprise!

For Pv1955;

karyotyping results

bad mouth sore

Anyone with ET use Besremi?

How IFN targets Jak2 mutation

Hydrea contains Lactose, could it affect Lactose Tolerance?

Interferon Alpha 2-a (PEG) vs 2-b,(Bes) exactly what's the diff?

Autumn Covid Booster

insomnia despite good sleep hygiene

Blood clots and bruises

brain fog

Potential Future Avenues for JAK2 Inhibitor Development and Alternative Therapeutic Approaches

Update from top MON Specialists

Hydroxyurea wait time

A month on ruxolitinib/Jakafi

ET and dental treatment

Impaired tumor surveillance in JAK2V617F MPN

Knee pain/restless legs at night

genetic karyotyping and attending MPN London

CofCoffCoffeCoffee

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