Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for September 2020

On joining

It has just occurred to me that I don’t think I thanked you for allowing me to join this group. I can’t remember but just incase thank you very much. I feel it...

It has just occurred to me that I don’t think I thanked you for allowing me to j...

Bield

•4 years ago

2 Replies

Flu jab

Thanks everyone for the advice. Going to have mine this afternoon. X

Bield

•4 years ago

Be the first to reply

Consultants in France

Have recently moved to south west France. Seeing a consultant at Tarbes hospital in October (PV diagnosed may this year). Don’t know if this doctor has the...

Have recently moved to south west France. Seeing a consultant at Tarbes hospital...

Ellipops

•4 years ago

24 Replies

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PV and Pneumonia jab.

Has anyone with PV had the Pneumonia jab? Any issues to consider? Would value anyone’s experience . Thanks

Has anyone with PV had the Pneumonia jab? Any issues to consider? Would value an...

JP-52

•4 years ago

8 Replies

Real-World Study Shows Promising Efficacy, Safety of Ropeg in MPN

https://www.ajmc.com/view/real-world-study-shows-promising-efficacy-safety-of-ropeg-in-mpn « Collectively, the ability of IFNα to target the...

https://www.ajmc.com/view/real-world-study-shows-promising-efficacy-safety-of-ro...

Manouche

•4 years ago

6 Replies

GABAPENTIN

Hi ... is anyone using gabapentin for sweating or itching or any other PV symptom. ??

Hi ... is anyone using gabapentin for sweating or itching or any other PV sympto...

Hidden

•4 years ago

15 Replies

Under 65 and flu jab?

As anybody under 65 had a call from there surgery about having the flu jab this year? I read somewhere this morning that their are fears already they are...

As anybody under 65 had a call from there surgery about having the flu jab this ...

Tico

•4 years ago

41 Replies

Splenic abscess

Looking for information on splenic abscesses Treated with long term antibiotic therapy. Not confirmed but possible splenic actinomycetes.

Looking for information on splenic abscesses Treated with long term antibiotic t...

Franny312

•4 years ago

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Flu jab

Does anyone have any specific views on having the flu jab when you have ET JAK 2 positive? Not sure if it’s a good idea.

Does anyone have any specific views on having the flu jab when you have ET JAK 2...

Bield

•4 years ago

26 Replies

Fingers blue/numb but only lntermittently

First time for me! Middle finger middle joint turned blue and top joint blanched, became numb and tingling. It lasted less than an hour then went away. It...

First time for me! Middle finger middle joint turned blue and top joint blanche...

IrishHiker

•4 years ago

22 Replies

Interesting MF podcast

Hi I found an interesting podcast. https://open.spotify.com/episode/3G3vShBDazYTnh2y8Gj9X8?si=j0I394NnQim9e0TdJbdosw Hope the link works!

Hi I found an interesting podcast. https://open.spotify.com/episode/3G3vShBDazY...

Not2bad

•4 years ago

3 Replies

ET

hi 41 years old ive had ET since 2016 but only found out when had my bloods done march 2020 when I got diagnosed my platelets count been down up last few...

hi 41 years old ive had ET since 2016 but only found out when had my bloods don...

Jody00

•4 years ago

7 Replies

ET

59 year old female. I was diagnosed with ET in april and am currently on 1000 mg of hydroxcycarbamide and 75 mg of clopidogrel . I would have gone with...

59 year old female. I was diagnosed with ET in april and am currently on 1000 m...

ciye

•4 years ago

11 Replies

Tinitous with PV and pegelated interferon?!

Has anyone else developed pulsatile tinitous while in their journey with PV w/ JAK2? I'm not sure if it's the PV or the interferon treatment... Any advice or...

Has anyone else developed pulsatile tinitous while in their journey with PV w/ J...

Ellafea

•4 years ago

8 Replies

ET ( Jack 2 )

Hi I’m 53 years old , I had a blood clot last February after that Dr discovery jack2 mutation in my bloods test my platelets high until 576 Dr putted me on...

Hi I’m 53 years old , I had a blood clot last February after that Dr discovery j...

Tcperez

•4 years ago

16 Replies

Dual Vaccine Trial in Myeloproliferative Neoplasms

Brief Summary: « A phase I-II study in patients with mutated MPN by vaccinating with PD-L1 and Aginase1 peptides with Montanide ISA-51 as adjuvant, to monitor...

Brief Summary: « A phase I-II study in patients with mutated MPN by vaccinating...

Manouche

•4 years ago

6 Replies

What is role of myeloid erthryoid ratio in jack2 positive mpn

I m newly diagnosed with mpn but dont know which mpn i hv as hct,hb,rbc,platelete all r high with positive jack2 but bmb confers panmyelosis with increased m e...

I m newly diagnosed with mpn but dont know which mpn i hv as hct,hb,rbc,platelet...

Spa1981

•4 years ago

3 Replies

Pegulated Inteferon

Hi, I recently posted after it was discussed at clinic about changing from HU to peg. I have never felt well on HU . At my clinic appointment this week I got...

Hi, I recently posted after it was discussed at clinic about changing from HU t...

jodary

•4 years ago

2 Replies

Sudden increase in hematocrit while on Pegasys?

Before I started Pegasys it was in range form 46.5-50 max with RBC 5.4-5.6, platelets 600-800. On weekly 45mcg Pegasys for 6 months it came down to 43 and RBC...

Before I started Pegasys it was in range form 46.5-50 max with RBC 5.4-5.6, plat...

Alexbits

•4 years ago

16 Replies

Research hints antiviral interferon could help some patients

The common thread in the research is the lack of a substance called interferon that helps orchestrate the body’s defense against viral pathogens and can be...

The common thread in the research is the lack of a substance called interferon t...

JT_Marlin

•4 years ago

1 Reply

Venesections

Hi all. My husband who’s only 47 has been recently diagnosed with PV (August 20). Whilst waiting for diagnosis he had a significant heart attack(June 20) He is...

Hi all. My husband who’s only 47 has been recently diagnosed with PV (August 20)...

Mylo6

•4 years ago

11 Replies

What is the future treatment for polycythemia vera

I just got confirmation that I m jack2 positive. Bone marrow findings are suggestive of panmyelosis and my rbc, hct, hgb, all were high. I m 40 yrs old and hv...

I just got confirmation that I m jack2 positive. Bone marrow findings are sugges...

Spa1981

•4 years ago

3 Replies

Germline Factors Affect Molecular Response to Treatment for Polycythemia Vera

« “These results indicate that all patients with PV may be eligible for ropeg therapy independent of their genetic makeup,” the authors wrote....

« “These results indicate that all patients with PV may be eligible for ropeg th...

Manouche

•4 years ago

1 Reply

Peginterferon approved!

Hi everyone, So just an update...... Peginterferon has been approved (PV Jak2+) and I start tomorrow! Only had letter and phone call today re appointment...

Hi everyone, So just an update...... Peginterferon has been approved (PV Jak2+) ...

Tmg59

•4 years ago

21 Replies

Abdominal pain or abdominal discomfort

Good afternoon all, I have progressed from ET (maybe PV, there’s a difference of opinion between 2 hospitals) to MF. My spleen isn’t only a little enlarged...

Good afternoon all, I have progressed from ET (maybe PV, there’s a difference ...

SuekJ

•4 years ago

5 Replies

Dizziness

Hello. I am 64 and diagnosed with PV 5 months ago. Have been injecting with Pegasus interferon for 4 months. Initially I appeared to have minimal side effects,...

Hello. I am 64 and diagnosed with PV 5 months ago. Have been injecting with Pega...

Ellipops

•4 years ago

4 Replies

Help me prep for my first visit to my hematologist.

In a few days I will see my specialist for the first time since my ET diagnosis(And APC-resistency). I am really nervous to be honest. I would like to ask you...

In a few days I will see my specialist for the first time since my ET diagnosis(...

Bohus

•4 years ago

16 Replies

MYELOFIBROSIS (MF) for Patients - A Talk by MESA & SCHERBER

Post by MPN-MATE Admin » Thu Sep 24, 2020 11:59 am Morning all my MPN brothers & sisters... :D Yes, and now the talk on Myelofibrosis (MF), as the third in...

Post by MPN-MATE Admin » Thu Sep 24, 2020 11:59 am Morning all my MPN brothers ...

socrates_8

•4 years ago

8 Replies

No sedation!

Due to covid protocol at the cancer facility I go to I will not be sedated during my next bone marrow biopsy in a few days. Has anyone had one of these...

Due to covid protocol at the cancer facility I go to I will not be sedated durin...

doglover57

•4 years ago

24 Replies

ET and Blood Pressure Meds

Hi again ET Jak2neg and I am finding it hard to find a blood pressure tablet that agrees with me after taking for four to six weeks I start to loose my breath...

Hi again ET Jak2neg and I am finding it hard to find a blood pressure tablet th...

Windy51

•4 years ago

4 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2020

On joining

Flu jab

Consultants in France

PV and Pneumonia jab.

Real-World Study Shows Promising Efficacy, Safety of Ropeg in MPN

GABAPENTIN

Under 65 and flu jab?

Splenic abscess

Flu jab

Fingers blue/numb but only lntermittently

Interesting MF podcast

ET

ET

Tinitous with PV and pegelated interferon?!

ET ( Jack 2 )

Dual Vaccine Trial in Myeloproliferative Neoplasms

What is role of myeloid erthryoid ratio in jack2 positive mpn

Pegulated Inteferon

Sudden increase in hematocrit while on Pegasys?

Research hints antiviral interferon could help some patients

Venesections

What is the future treatment for polycythemia vera

Germline Factors Affect Molecular Response to Treatment for Polycythemia Vera

Peginterferon approved!

Abdominal pain or abdominal discomfort

Dizziness

Help me prep for my first visit to my hematologist.

MYELOFIBROSIS (MF) for Patients - A Talk by MESA & SCHERBER

No sedation!

ET and Blood Pressure Meds

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