Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for December 2019

Pegasys Injection Sites?

Hello, My mom got diagnosed with ET a few months back and just got started on Pegasys. She had her first injection today by the nurse in her upper arm. I...

Hello, My mom got diagnosed with ET a few months back and just got started on Pe...

Dragon85

•4 years ago

10 Replies

Elevated platelets

Hi..not sure if I am in the correct forum. 1st time ever gaming elevated platelets 419 and 441 second BW. More BW Jan 16th. I am scared more so of reactive...

Hi..not sure if I am in the correct forum. 1st time ever gaming elevated platele...

Amega

•4 years ago

5 Replies

Found Jak2 mutation with normal bloodwork

Hi everyone:) My gastric doctor ran a gene test on me because 10 years ago I had a blood clot to my liver. No one ever knew why I got the clot. He found last...

Hi everyone:) My gastric doctor ran a gene test on me because 10 years ago I had...

Gavitian

•4 years ago

14 Replies

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Is it et?

What's everyone's thoughts I know your not doctors and I havent had investigation done yet but what are peoples experiences? My platelets 574 Crp normal. All...

What's everyone's thoughts I know your not doctors and I havent had investigatio...

Irishgal12

•4 years ago

24 Replies

ASH 2019: Interferon-Alfa Treatment Offers Best Outcomes in Polycythemia Vera

https://www.practiceupdate.com/content/ash-2019-interferon-alfa-treatment-offers-best-outcomes-in-polycythemia-vera/94020

https://www.practiceupdate.com/content/ash-2019-interferon-alfa-treatment-offers...

Manouche

•4 years ago

3 Replies

MF and mutations

Hi I am 79 and have been diagnosed with MF. Blood tests have confirmed I have the following mutations EZH2 x 2, ASXL1, ETV6 in addition to Jak2. I am currently...

Hi I am 79 and have been diagnosed with MF. Blood tests have confirmed I have th...

billybrock

•4 years ago

7 Replies

help me understand what the significance of neutrophils,lymphocytes, and abs neutrophils is in relation to JAK 2

My platelet count is pretty steady at 567 and I am taking baby aspirin therapy only.. My monthly blood work showed an increase in abs neutrophils and...

My platelet count is pretty steady at 567 and I am taking baby aspirin therapy o...

milw532

•4 years ago

8 Replies

Scared

Hi am 32, female Platlets over the years have always fluctuated my normal seems to he 450 454. Recently it was 571 6 week later 574 No symptoms Waiting to...

Hi am 32, female Platlets over the years have always fluctuated my normal seems...

Irishgal12

•4 years ago

68 Replies

PV and high WBC

Hi, does anyone have PV with a high WBC that’s controlled only by venesections rather than medication? Not sure what the risks are associated with raised...

Hi, does anyone have PV with a high WBC that’s controlled only by venesections r...

MJoye

•4 years ago

17 Replies

Christmas message 2019 from the team at MPN Voice

Hello everyone We really have had another fantastic year and would like to thank all of you for your support and involvement, not just in attending forums,...

Hello everyone We really have had another fantastic year and would like to than...

Mazcd

Partner•4 years ago

28 Replies

Platelets!

I have PV and have been on hydroxy for 3 years and this has been controlling my bloods. However, after research here and elsewhere I decided to see if my diet...

I have PV and have been on hydroxy for 3 years and this has been controlling my ...

Bluetop

•4 years ago

6 Replies

Newly joined

Had JAK2 ET for 15 years now, with no symptoms and only being treated with Venesections. It is now changing to Myeloid Fibrosis, still with no symptoms - but...

Had JAK2 ET for 15 years now, with no symptoms and only being treated with Venes...

Tylerdog1

•4 years ago

8 Replies

Neck rash and ET??

Does anyone experience rashes and are they associated with ET? I periodically get a red rash on my neck it's itchy and sore and feels a bit like prickaliy...

Does anyone experience rashes and are they associated with ET? I periodically ge...

Camelian

•4 years ago

13 Replies

JAK 2 positive : need understanding of test results

I have been diagnosed for about 1 year. My platelet count is pretty stable at approximately 52.9 The doctor is prescribing a baby aspirin daily. The monthly...

I have been diagnosed for about 1 year. My platelet count is pretty stable at a...

milw532

•4 years ago

2 Replies

Lifting levels of knowledge in myeloproliferative neoplasms (MPN)

https://twitter.com/mpn_hub/status/1206946713333833730?s=21

Manouche

•4 years ago

4 Replies

Can people with ET get pregnant? Are there any specific risks?

Hi.. I was diagnosed with ET (CalR) 2 years ago and my physician never mentioned that I won't be able to get pregnant and didn't really discuss the topic but...

Hi.. I was diagnosed with ET (CalR) 2 years ago and my physician never mentioned...

Wadz

•4 years ago

10 Replies

Bone Pain

Recently I have been experiencing a dull ache in my feet but only when in bed and not moving around. If I get up and walk around it goes away. Is this the...

Recently I have been experiencing a dull ache in my feet but only when in bed a...

kiwitraveller

•4 years ago

2 Replies

Targeting stem cells that drive aggressive blood cancer

Post by MPN-MATE Admin » Tue Dec 17, 2019 3:45 am DEC. 12, 2019 Targeting stem cells that drive aggressive blood cancer by Peter MacCallum Cancer Centre As...

Post by MPN-MATE Admin » Tue Dec 17, 2019 3:45 am DEC. 12, 2019 Targeting stem ...

socrates_8

•4 years ago

Be the first to reply

CBD and thrombocytopenia

I just found this community on here and I was just looking for information, I wasn't trying to step on toes. I've had ITP for 20 years I have always went to...

I just found this community on here and I was just looking for information, I wa...

Nono1948

•4 years ago

2 Replies

Good news re allele burden

Today my haematologist told me my allele burden has decreased from 75% to 33% since this time last year. I have been on Pegasys since December 2017. The first...

Today my haematologist told me my allele burden has decreased from 75% to 33% si...

Marossi

•4 years ago

41 Replies

A little knowledge is a dangerous thing

Last week I wrote a post asking about the significance of low leukocytes (and high eosinophils) on Pegasys. Thank you to those of you who answered. I must...

Last week I wrote a post asking about the significance of low leukocytes (and hi...

Marossi

•4 years ago

Be the first to reply

Availability of Interferon Scotland

I am currently on Pegylated Interferon and we are considering moving to Scotland, and wondered if this drug is readily available in hospitals there. I know...

I am currently on Pegylated Interferon and we are considering moving to Scotland...

AnitaJ

•4 years ago

3 Replies

Jak 2positive MPN treatment Ruxolitinib

My husband was diagnosed as above 3years ago and started Ruxolitinib 15mg twice a day 30 months ago. Has anyone with same illness experienced any lack of...

My husband was diagnosed as above 3years ago and started Ruxolitinib 15mg twice ...

waddles22

•4 years ago

5 Replies

Ropeginterferon effective treatment for PV, ASH 2019 interview with Dr. Kiladjian

Hi Folks, I know this drug is not available to everyone yet (nor in the U.S.), but I felt like the interview was worth sharing. Hope you enjoy -...

Hi Folks, I know this drug is not available to everyone yet (nor in the U.S.), b...

PVReporter

•4 years ago

3 Replies

My pain

Thanks I'm sorry if I got in the wrong conversation. I know it won't help my ITP, just wondering if I could use the CBD oil, I can not. It effects the...

Thanks I'm sorry if I got in the wrong conversation. I know it won't help my I...

Nono1948

•4 years ago

6 Replies

Blisters

I have ET and am being treated with aspirin and under a watch and wait treatment programme ! My platelets at the last count had gone up to 520 from 502 (they...

I have ET and am being treated with aspirin and under a watch and wait treatmen...

Chrissyb61

•4 years ago

5 Replies

Drug trial

Hi every body. I wondered if anybody with PV has been asked if they would like to take part in a drug trial. I've had PV for 4 years and was on Hydroxy for3...

Hi every body. I wondered if anybody with PV has been asked if they would like t...

Splb3317

•4 years ago

11 Replies

High platelets

Hello, my wife had very high blood platelets. We are looking for something that will lower them. I am wondering if CBD might help. Thank you

Hello, my wife had very high blood platelets. We are looking for something that ...

Indianrider

•4 years ago

12 Replies

PV question

Hi, I’m new to this site and would like to talk to others in a similar situation to myself. I’m 55 and was diagnosed with PV JAK2 genetic fault in August....

Hi, I’m new to this site and would like to talk to others in a similar situation...

MJoye

•4 years ago

21 Replies

CBD Oil

I am looking into cbd oil and if it helps in anyway with my ET. I take hydroxyurea and asprin.? Anyone?

I am looking into cbd oil and if it helps in anyway with my ET. I take hydroxyur...

Klys

•4 years ago

5 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for December 2019

Pegasys Injection Sites?

Elevated platelets

Found Jak2 mutation with normal bloodwork

Is it et?

ASH 2019: Interferon-Alfa Treatment Offers Best Outcomes in Polycythemia Vera

MF and mutations

help me understand what the significance of neutrophils,lymphocytes, and abs neutrophils is in relation to JAK 2

Scared

PV and high WBC

Christmas message 2019 from the team at MPN Voice

Platelets!

Newly joined

Neck rash and ET??

JAK 2 positive : need understanding of test results

Lifting levels of knowledge in myeloproliferative neoplasms (MPN)

Can people with ET get pregnant? Are there any specific risks?

Bone Pain

Targeting stem cells that drive aggressive blood cancer

CBD and thrombocytopenia

Good news re allele burden

A little knowledge is a dangerous thing

Availability of Interferon Scotland

Jak 2positive MPN treatment Ruxolitinib

Ropeginterferon effective treatment for PV, ASH 2019 interview with Dr. Kiladjian

My pain

Blisters

Drug trial

High platelets

PV question

CBD Oil

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