Posts - MPN Voice | HealthUnlocked

MPN Voice

10,575 members • 14,620 posts

All posts for May 2022

Insurance moan

Well, i have to vent or I will explode. As i am still pending a firm diagnosis, awaiting BMB in June and off to Dubai on Saturday for holidays, my wonderful...

Well, i have to vent or I will explode. As i am still pending a firm diagnosis, ...

LittleLuna

•2 years ago

4 Replies

Omega 3's to reduce some MPN issues?

Two of my favorite experts did a podcast: https://hubermanlab.com/dr-rhonda-patrick-micronutrients-for-health-and-longevity/ I already take DHA and EPA but...

Two of my favorite experts did a podcast: https://hubermanlab.com/dr-rhonda-patr...

Elizka

•2 years ago

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A moan with a twist!

Those of you who know me know that it’s not usually in my repertoire to moan but I think I’m in need of a bit of support from people who understand. My...

Those of you who know me know that it’s not usually in my repertoire to moan but...

beetle

•2 years ago

32 Replies

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Covid antivirals, fingernails

Discovered that I should have been pushy on Friday to get antivirals from haematology within 5 days, just been told it's too late now. A strange thing is...

Discovered that I should have been pushy on Friday to get antivirals from haemat...

Joetcalr

•2 years ago

4 Replies

ET is LEUKAEMIA???

Since the main problem is the bone marrow for ET Is it leukaemia??? Is it curable?

Since the main problem is the bone marrow for ET Is it leukaemia??? Is it curabl...

shiela23

•2 years ago

6 Replies

Interferon alpha

I am now 64 and was diagnosed with polycethmia Vera in January 2021. I have the JAK 2 mutation) My haematocrit was very high at 0.8 . Since then I have had a...

I am now 64 and was diagnosed with polycethmia Vera in January 2021. I have the...

Paul1214

•2 years ago

22 Replies

Navitoclax + Rux study VAF and Fibrosis for MF

This may already be posted, but I can't find it. Navitoclax study looks promising for Rux resistant MF. -One novel item of interest is an actual correlation...

This may already be posted, but I can't find it. Navitoclax study looks promisin...

EPguy

•2 years ago

1 Reply

Another little update

Hello friends! Today marks six weeks in hospital and I have to say I am genuinely feeling better. My consultant has reviewed my BMB results and says the...

Hello friends! Today marks six weeks in hospital and I have to say I am genuinel...

Otterfield

•2 years ago

48 Replies

ET maybe wrong diagnosis

After almost 1 year light frequent numbness and then become very bad numbness to feel body was going to explode , to wake up in the middle of night by...

After almost 1 year light frequent numbness and then become very bad numbness t...

Inverter

•2 years ago

11 Replies

Covid treatment

I'm ill with Covid, fainting, temperature, bad throat, sneezing, cough. tested positive on Tues, had a Peg injection the day before, also topical antibiotics...

I'm ill with Covid, fainting, temperature, bad throat, sneezing, cough. tested p...

Joetcalr

•2 years ago

22 Replies

Surprised at results. An update.

My dear friends. Just sharing my update. So I started 6 weeks ago taking Inteferon my first medication since starting on aspirin in 2016 for my jak2 ET, I’m...

My dear friends. Just sharing my update. So I started 6 weeks ago taking Intefe...

Buddhability

•2 years ago

64 Replies

Murdoch01

I was told by my GP that they will refer me but then Guys will take over from my Haematologist completely, I am sure I have read that Prof Harrison and the...

I was told by my GP that they will refer me but then Guys will take over from my...

Murdoch01

•2 years ago

8 Replies

A bit of drama on Besremi

(there's a sort of survey question near the end) I've been on it for 3 months now. From starting dose of 50mcg for HU transition my dose last week was ~110....

(there's a sort of survey question near the end) I've been on it for 3 months no...

EPguy

•2 years ago

54 Replies

Pneumonia update

Hello, all, as some of you may know, I was hospitalized with pneumonia 2 months ago. A ct scan was performed on my lungs the report stated that I may have...

Hello, all, as some of you may know, I was hospitalized with pneumonia 2 months...

Cja1956

•2 years ago

6 Replies

Mpn specialists

I live in Doncaster and was wondering if there are any mpn specialists in the S Yorks area, or is London the closest. Thanks Karen

I live in Doncaster and was wondering if there are any mpn specialists in the S ...

Luger1067

•2 years ago

12 Replies

Terrys nails

I have pv jak2 and taking hydroxy, I've noticed over the last few days I have what looks like terrys nails . They're white at the base and darker at the tips....

I have pv jak2 and taking hydroxy, I've noticed over the last few days I have wh...

poly2

•2 years ago

7 Replies

How long should it take to be referred to an mpn specialist

Hi All I requested for my haematologist to refer me to Prof Harrison at guys in the middle of March. After reading some very helpful posts on here I emailed...

Hi All I requested for my haematologist to refer me to Prof Harrison at guys in ...

Dottiedot

•2 years ago

16 Replies

Anyone with Exon 12 mutation out there?

Hi Everyone, I was diagnosed a year and a half ago with polycythemia vera with a negative v617f mutation and a positive Exon 12 mutation. The literature says...

Hi Everyone, I was diagnosed a year and a half ago with polycythemia vera with ...

gvibes

•2 years ago

7 Replies

Besremi and Pfizer Booster shot - Question

Requesting anyone to please share any positive/negative experience for a (2nd booster or 4th total from start) Pfizer booster shot while being treated with...

Requesting anyone to please share any positive/negative experience for a (2nd bo...

Pat032018

•2 years ago

5 Replies

Pegasys first dose and bad nausea

My Besremi was denied for the 2nd time with UHC Currently in the 3rd appeal with my husband’s self insured company. In the meantime I started on Pegasys 45 mcg...

My Besremi was denied for the 2nd time with UHC Currently in the 3rd appeal with...

JeanieRN

•2 years ago

8 Replies

World Blood Cancer Day May 28th

Please help promote knowledge about Blood Cancers and Stem Cell Transplant Matching. Help support the become a donor campaigns! Global event! Please see link...

Please help promote knowledge about Blood Cancers and Stem Cell Transplant Match...

Dovme

•2 years ago

6 Replies

White blood count

Does anyone know if there’s a link between elevated white blood cell count and stress

Does anyone know if there’s a link between elevated white blood cell count and s...

Luger1067

•2 years ago

4 Replies

Blood results changing

Hi I’m new here, was diagnosed with p/m 15 years ago and been taking hydroxyurea. Recently blood results changing I’m worried it’s changing to m.f

Hi I’m new here, was diagnosed with p/m 15 years ago and been taking hydroxyurea...

Luger1067

•2 years ago

7 Replies

2022 NCCN Guidelines for MPNs

Another good resource posted by our friends from the MPN Research Foundation. 2022 National Comprehensive Cancer Network Guidelines - Myeloproliferative...

Another good resource posted by our friends from the MPN Research Foundation. 2...

hunter5582

•2 years ago

21 Replies

Booster

Which booster do you all recommend going round in circles with my consultant, gp and vaccine centre. My 1st and 2nd was AstraZeneca vaccine. Been avoiding my...

Which booster do you all recommend going round in circles with my consultant, gp...

Avamia94

•2 years ago

15 Replies

MPN Patient Bill of Rights

From our friends at the MPN Research Foundation. These key principles are well thought out and speak to the care we all deserve to receive....

From our friends at the MPN Research Foundation. These key principles are well ...

hunter5582

•2 years ago

1 Reply

MPN specialist

Good afternoon, I am trying to find an MPN specialist local to where I am, I am struggling a little as they seem to be fairly few and far between, I live in...

Good afternoon, I am trying to find an MPN specialist local to where I am, I am ...

Bear111

•2 years ago

12 Replies

Wonderful News

Have just had a phone appointment with the haematologist - my bloods were perfectly normal except for a slightly raised white cell count (which, I didn't say,...

Have just had a phone appointment with the haematologist - my bloods were perfec...

Hidden

•2 years ago

11 Replies

Genetic testing results questions

Thank you to all who have replied to my post. I am still bewildered and in shock. I will get results from genetic testing this week and have most likely MF Is...

Thank you to all who have replied to my post. I am still bewildered and in shock...

artydutch

•2 years ago

4 Replies

LLS (Leukemia & Lymphoma Society) National Patient Registry Covid Vaccine guidelines

This is the latest update from the LLS National Patient Registry regarding blood cancer patients. It discusses items including related to recent posts on 4th...

This is the latest update from the LLS National Patient Registry regarding blood...

EPguy

•2 years ago

2 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2022

Insurance moan

Omega 3's to reduce some MPN issues?

A moan with a twist!

Covid antivirals, fingernails

ET is LEUKAEMIA???

Interferon alpha

Navitoclax + Rux study VAF and Fibrosis for MF

Another little update

ET maybe wrong diagnosis

Covid treatment

Surprised at results. An update.

Murdoch01

A bit of drama on Besremi

Pneumonia update

Mpn specialists

Terrys nails

How long should it take to be referred to an mpn specialist

Anyone with Exon 12 mutation out there?

Besremi and Pfizer Booster shot - Question

Pegasys first dose and bad nausea

World Blood Cancer Day May 28th

White blood count

Blood results changing

2022 NCCN Guidelines for MPNs

Booster

MPN Patient Bill of Rights

MPN specialist

Wonderful News

Genetic testing results questions

LLS (Leukemia & Lymphoma Society) National Patient Registry Covid Vaccine guidelines

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