Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for March 2023

My Heamatologist said I most likely have ET and mutation tests showed I have JAK2

Hi to you all and thank you for this forum as I’m learning so much from the chats 🌸 I was involved in a sleep study last year which was trialling larger...

Hi to you all and thank you for this forum as I’m learning so much from the chat...

Pachena

•1 year ago

10 Replies

Hydroxy or Interferon for ET Jak2?

Hi all I have been taking Hydroxy since the end of December (shortly after the diagnosis of ET Jak2) last year when my platelets were 1025, they came down...

Hi all I have been taking Hydroxy since the end of December (shortly after the ...

Arnoldthecat

•1 year ago

33 Replies

Thanks mpn buddys

So many nice and helpful people on this site. So many supportive people, appreciate this What a Team :) Its hard and worrying at times living with MPN's...

So many nice and helpful people on this site. So many supportive people, apprec...

Hidden

•1 year ago

7 Replies

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Calr type 1

Hi! I am looking for calr type 1-buddies! For how long have you had ET ? Are you on meds? For how long?

Hi! I am looking for calr type 1-buddies! For how long have you had ET ? Are you...

Johan2021

•1 year ago

5 Replies

Pegasys Side Effects

On my 7th week (7th dose at 90mcg per dose) of Pegasys and noticing massive fatigue and some mood swings. Has anyone experience similar side effects and how...

On my 7th week (7th dose at 90mcg per dose) of Pegasys and noticing massive fati...

Zeppelin11

•1 year ago

7 Replies

Update

I look back fondly on the days when I was only worried about having n MPN. In the past few weeks I developed a blood clot. That has led to initiation of...

I look back fondly on the days when I was only worried about having n MPN. In th...

Mtnlife

•1 year ago

53 Replies

So disappointed!

Good morning all. After the hospital lost my blood last week and having to go back for another blood test yesterday, the results were discouraging. E T (want...

Good morning all. After the hospital lost my blood last week and having to go ba...

Cokopops

•1 year ago

4 Replies

another booster.?

does anyone know if and when we will get another covid booster this year , I’m sure I read that some of us should be getting one. Thankyou

does anyone know if and when we will get another covid booster this year , I’m ...

sweetpea19

•1 year ago

24 Replies

Question for the group

I was diagnosed in 2005 with PV jak 2 positive, since then neither my local hospital hematology or guy's hematology have been able to control my counts ,...

I was diagnosed in 2005 with PV jak 2 positive, since then neither my local hos...

Regge

•1 year ago

3 Replies

How to find a MPN specialist

Hello, a while ago somebody kind told me the nearest MPN specialist options for me, in Merida and Miami. I have been searching for it, but can't find it....

Hello, a while ago somebody kind told me the nearest MPN specialist options for...

love0826

•1 year ago

2 Replies

BMB Results Not Clear - Is this Common?

In 2015, I was diagnosed with ET based on platelet levels and Jak2. Treatment has been daily aspirin. At the time (and over the years), my doctor (not an MPN...

In 2015, I was diagnosed with ET based on platelet levels and Jak2. Treatment ha...

LT55

•1 year ago

18 Replies

Constantly worrying

hello since my husband has been diagnosed last June the last few weeks my husband said he just feels upset like no spark in life no more like not excited to...

hello since my husband has been diagnosed last June the last few weeks my husb...

Green1988

•1 year ago

22 Replies

Update and few questions because i have no reliable sources

I posted a while ago about being not able to fit in who criteria but given a pv suspicion based on symptoms and counts.I've sought help to see if at all mpn...

I posted a while ago about being not able to fit in who criteria but given a pv ...

Xuzy

•1 year ago

10 Replies

Back on Peg..Any tips?

Finally bit the bullet and took first dose of peg last night after a 14 month break. Man I forgot how rough the hangover can be 😅 In such a (relatively)...

Finally bit the bullet and took first dose of peg last night after a 14 month br...

IrishSarah

•1 year ago

9 Replies

Sudden rise of platelets with PV

A week ago, I posted that my platelets and WBC were suddenly rising while taking Hydroxy and aspirin. Today the platelet count was even higher, in just one...

A week ago, I posted that my platelets and WBC were suddenly rising while takin...

love0826

•1 year ago

3 Replies

Update on appointments

Hi guys , got my letter threw post today with my results which was from 6th of March that would of been 4 weeks then off pegasys interferon, Hb - 127 WBC-5.1...

Hi guys , got my letter threw post today with my results which was from 6th of M...

Jody00

•1 year ago

2 Replies

Webinar - What You Need To Know About Polycythemia Vera

From our friends at MPN Advocacy & Education International. A Conversation with MPN Specialists - What You Need To Know About Polycythemia...

From our friends at MPN Advocacy & Education International. A Conversation wi...

hunter5582

•1 year ago

6 Replies

appointment with consultant today - thoughts?!

Hi I had an appointment today with one of the consultants that work with Claire Harrison - he was great…. during the appointment he said some people sit in the...

Hi I had an appointment today with one of the consultants that work with Claire ...

Carthe

•1 year ago

33 Replies

ET-related sleep issues - waking up hot

Hi all, I wanted to know if anyone has had any similar experiences with interrupted sleep? For the past month, I have been waking up in the middle of the...

Hi all, I wanted to know if anyone has had any similar experiences with interru...

ET_Gooner

•1 year ago

28 Replies

ET Jak2 W/Critically High Potassium - Not

Spent most of yesterday day dealing with weekly blood tests and then in ER for quite a while. My doctor saw the lab blood test results and called to tell me...

Spent most of yesterday day dealing with weekly blood tests and then in ER for q...

Mishie14

•1 year ago

18 Replies

Understanding jump in platelet levels

Advice Please! After two years of PV being managed with venesections and aspirin, I moved into the high risk category by virtue of age and six weeks ago...

Advice Please! After two years of PV being managed with venesections and aspiri...

Imkerin

•1 year ago

7 Replies

Query

E.T. Jak2 positive since 2018. On Hydroxicarbamide since autumn 2019. Bloods every three months and platelets reduced and more or less stable. This last six...

E.T. Jak2 positive since 2018. On Hydroxicarbamide since autumn 2019. Bloods eve...

Mcrg

•1 year ago

2 Replies

CALR ET and hydroxyurea

Had my quarterly hemo visit today, bloods overall were good but platelets are just under 1.2M. My new hematologist at MD here in Houston is starting me on...

Had my quarterly hemo visit today, bloods overall were good but platelets are ju...

dbus1417

•1 year ago

12 Replies

Gum lesions from Hydrea

I have developed gum lesions from Hydrea. They aren't white places, but bright red. My haematologist didn't have anything to offer me on what to do about it....

I have developed gum lesions from Hydrea. They aren't white places, but bright r...

dogsandhorses

•1 year ago

8 Replies

Open for good laugh

I was just lurking on here and had platelets on the mind. At the same time my dog was ripping up something so I said "Come here platelet!" I called my dog...

I was just lurking on here and had platelets on the mind. At the same time my do...

clubdino

•1 year ago

9 Replies

What is wrong with me?

so, about six years ago my platelets started to be elevated. The doctors don’t seem too concerned. I was researching on my own a couple years ago and found...

so, about six years ago my platelets started to be elevated. The doctors don’t ...

levismama

•1 year ago

16 Replies

ET and sexual health!

Hi This is mainly a question for male members here. I hope its ok to ask this here and there is no taboo topics here. I just want to know how this disease...

Hi This is mainly a question for male members here. I hope its ok to ask this h...

Myers75

•1 year ago

10 Replies

Travel Insurance

Hi. Can anybody offer advice on who they have had travel insurance through please. I have myelofibrosis and was insured the last couple of years on a family...

Hi. Can anybody offer advice on who they have had travel insurance through pleas...

ajdolly

•1 year ago

9 Replies

triple negative ET

… I’m a bit confused with the triple negative - does this mean they can’t find which gene it is but the bloods show it’s an ET or does it mean they can’t see...

… I’m a bit confused with the triple negative - does this mean they can’t find w...

Carthe

•1 year ago

25 Replies

Headaches. A Jakavi side effect?

Hello I’ve not posted before. Now I am feeling rather lost! I have been on Jakavi since August 22 after being diagnosed with MF. I had a high Sympton burden...

Hello I’ve not posted before. Now I am feeling rather lost! I have been on Jaka...

Sherpa8

•1 year ago

9 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2023

My Heamatologist said I most likely have ET and mutation tests showed I have JAK2

Hydroxy or Interferon for ET Jak2?

Thanks mpn buddys

Calr type 1

Pegasys Side Effects

Update

So disappointed!

another booster.?

Question for the group

How to find a MPN specialist

BMB Results Not Clear - Is this Common?

Constantly worrying

Update and few questions because i have no reliable sources

Back on Peg..Any tips?

Sudden rise of platelets with PV

Update on appointments

Webinar - What You Need To Know About Polycythemia Vera

appointment with consultant today - thoughts?!

ET-related sleep issues - waking up hot

ET Jak2 W/Critically High Potassium - Not

Understanding jump in platelet levels

Query

CALR ET and hydroxyurea

Gum lesions from Hydrea

Open for good laugh

What is wrong with me?

ET and sexual health!

Travel Insurance

triple negative ET

Headaches. A Jakavi side effect?

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