Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for October 2023

Engaging Conversations: Chats with MPN Specialists

»Embark on a journey of enlightening dialogues surrounding Myeloproliferative Neoplasms (MPNs) with the distinguished specialists in the field. These live...

»Embark on a journey of enlightening dialogues surrounding Myeloproliferative N...

Manouche

•1 year ago

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Travelling

I am travelling to New York beginning of December with my daughter. I have Essential Thrombocythemia and I'm taking hydroxycarbamide as well as other meds. Do...

I am travelling to New York beginning of December with my daughter. I have Essen...

linphy

•1 year ago

12 Replies

increased headaches not on Aspirin

Hi all, Just a query question plz. I recently went to hospital with bleeding from my back passage after ongoing toilet problems. I had lots of blood tests...

Hi all, Just a query question plz. I recently went to hospital with bleeding f...

Grendall

•1 year ago

6 Replies

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Coccyx fracture

In early April this year I managed to fall heavily into a sharp rock, it resulted in a lot of pain! I went to A&E the following day but was turned away and...

In early April this year I managed to fall heavily into a sharp rock, it resulte...

RazB

•1 year ago

21 Replies

Ruxolitinib

Hi Has anyone been on Ruxolitinib for PV for the last couple of years ,and could share the effects regarding taking Ruxolitinib? I have been advised to...

Hi Has anyone been on Ruxolitinib for PV for the last couple of years ,and co...

Bobadog

•1 year ago

17 Replies

using pegasys during pregnancy

hi everyone i am 36 ,pregnant with my second child During my first pregnancy i used standard INF .It was very normal experience with healthy outcomes.After...

hi everyone i am 36 ,pregnant with my second child During my first pregnancy ...

Violetaaa

•1 year ago

3 Replies

Combining Hydroxycarbomide with venesections?

Hello everyone, I am seeking your advice again, so glad you are here! I have PV, diagnosed 2021 which was initially controlled through regular venesections....

Hello everyone, I am seeking your advice again, so glad you are here! I have PV...

Imkerin

•1 year ago

14 Replies

Interferon and Hypothyroidism

I have ET and have been taking HU 500mcg daily for nearly 4 years. My platelets reduced from about 1200 to hover around 700-800 at each blood test. My...

I have ET and have been taking HU 500mcg daily for nearly 4 years. My platelets ...

jodary

•1 year ago

9 Replies

When is it important to have a bone marrow biopsy?

My husband and I both have ET diagnosed for both of us in March 2022. We haven’t had bone marrow biopsies. Do our blood counts show that a biopsy is not...

My husband and I both have ET diagnosed for both of us in March 2022. We haven’t...

Na56

•1 year ago

44 Replies

Polychromasia in peripheral smear?

I'm 23 M Jak2 negative, bmb inconclusive, done in 2018 Recent peripheral smear shows anisocytosis and polychromasia. Is this worrisome feature? Am i landing up...

I'm 23 M Jak2 negative, bmb inconclusive, done in 2018 Recent peripheral smear s...

Xuzy

•1 year ago

1 Reply

MPN specialist in Australia?

Hi all. I’ve been lurking on the forum for a few months as I went through the process of being diagnosed with ET Jak-2. I have pronounced symptoms which led...

Hi all. I’ve been lurking on the forum for a few months as I went through the pr...

ControlGroup

•1 year ago

13 Replies

Big Question

I have been in complete haematologic remission on Pegasys (45 ug every 2 weeks for the last year). I have never had an official allele burden as it is not...

I have been in complete haematologic remission on Pegasys (45 ug every 2 weeks f...

Planti

•1 year ago

46 Replies

Anagrelide (Agrylin)

I am a 74 year old living in the U.S. - diagnosed with ET CALR 2 mutation in 2021. Was put on Hydrea aka hydroxyurea and low dose aspirin immediately. After...

I am a 74 year old living in the U.S. - diagnosed with ET CALR 2 mutation in 20...

mpnunlocked

•1 year ago

8 Replies

Ongoing anemia

Hello, I am thinking if my wife has ongoing anemia due to a bleed the Drs can't or won't find. Why wait for four months to give her red blood cells when she...

Hello, I am thinking if my wife has ongoing anemia due to a bleed the Drs can't ...

jointpain

•1 year ago

8 Replies

INvestigating the genetic and cellular basis of sporadic & Familial Myeloid Disorders “the INForMed study”

Hi, I’m participating in this study and wondered whether anyone else is? It’s being done at the Cancer & Haematology Centre, Churchill Hospital, Oxford. Have...

Hi, I’m participating in this study and wondered whether anyone else is? It’s b...

Carol0925

•1 year ago

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Metformin Use and the Risk of Myeloproliferative Neoplasms in a Danish Population Based Cohort

I am very curious if any MPNérs are using Metaformin and what effects they are experiencing on their MPN... See: In this study we found an inverse association...

I am very curious if any MPNérs are using Metaformin and what effects they are e...

pvdm

•1 year ago

3 Replies

Delay starting hydrea for vaccines?

Unfortunately, this question came to me after I saw the doctor. A month ago, I was referred to a hematologist for abdominal pain, abnormal CBC and...

Unfortunately, this question came to me after I saw the doctor. A month ago, I ...

Scroop

•1 year ago

15 Replies

platelets down . Hematocrit up

Hello all … this is my very first post on this so so helpful site . My partner was diagnosed with MPN in March … ( elevated platelets but also elevated red...

Hello all … this is my very first post on this so so helpful site . My partner ...

Curlynik

•1 year ago

14 Replies

Osteoporosis and PV

Hi , I was recently diagnosed with osteoporosis with a Dexa scan,after the MRI showed sacral fractures ,which had caused quite severe back pain for sometime....

Hi , I was recently diagnosed with osteoporosis with a Dexa scan,after the MRI ...

Bobadog

•1 year ago

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Start of my stem cell journey 0.3.1 ambulatory care

I have been offered Ambulatory Care (treatment in a specialised day unit) for my stem cell transplant has anyone else gone through this process?

I have been offered Ambulatory Care (treatment in a specialised day unit) for my...

Grizly

•1 year ago

5 Replies

PRP with MPN?

can us folks with MPN do PRP therapy or is our blood too dysfunctional?

Mountainbiker12

•1 year ago

8 Replies

Itchy rash

Well finally told to stop Hu today due to a spottie itchy rash that goes from right bicep across shoulder(back/front) up my neck into hair line, across my...

Well finally told to stop Hu today due to a spottie itchy rash that goes from ri...

Spanelmad

•1 year ago

22 Replies

Peginterferon alfa 2a or Hydroxycarbamide for PV?

My consultant has said I need to start treatment for PV and has asked me to choose between them. I'd really welcome any recommendations. I am new to this site,...

My consultant has said I need to start treatment for PV and has asked me to choo...

Lyndjs

•1 year ago

25 Replies

Can shingrix vaccination effect platelet count?

Hi everyone I’ve just been for my 4 month appointment with my haematologist and my platelets have increased from 375 to 460. He wants me to come back in 2...

Hi everyone I’ve just been for my 4 month appointment with my haematologist and ...

Na56

•1 year ago

5 Replies

Chronic kidney disease

My recent GP-ordered blood tests have revealed chronic kidney disease. I have been told that an appointment will not be necessary. My creatine count is very...

My recent GP-ordered blood tests have revealed chronic kidney disease. I have b...

MaggieSylvie

•1 year ago

11 Replies

IVIG while having ET?

Hi everyone. Has anyone with ET ever been treated with IVIG and if so did it help or hurt your symptoms? Almost 3 years ago I stopped taking peg for my...

Hi everyone. Has anyone with ET ever been treated with IVIG and if so did it ...

George1976

•1 year ago

5 Replies

RE: My quick Hydroxy Question.

Thank you so very much for the amazing number of helpful replies I’ve received from you lovely people. I’ve been taking my one 500 mg capsule at 9 pm, so think...

Thank you so very much for the amazing number of helpful replies I’ve received f...

azaelea

•1 year ago

1 Reply

Anyone taking 325mg aspirin with 1000-1500 HU daily for ET?

I'm 75 and my platelets are under 700. I also take fish oil along with a dozen prescription meds. My oncologist prescribed this much aspirin and HU. Should I...

I'm 75 and my platelets are under 700. I also take fish oil along with a dozen p...

jewelmaker

•1 year ago

6 Replies

Interferon effects

Hi,I've started my journey with Pegasys about 5 weeks ago. I am on 45mcg weekly. Before Pegasys my platelets were close to 600 and HCT around 0.55 Today my...

Hi,I've started my journey with Pegasys about 5 weeks ago. I am on 45mcg weekly....

kamiilos

•1 year ago

8 Replies

Start of my Stem Cell Journey 0.3

Well, where do I start. The transplant team wanted to increase my Rux to 10 mgs which has been really good for me. So much energy hardly any symptoms and...

Well, where do I start. The transplant team wanted to increase my Rux to 10 mgs...

Grizly

•1 year ago

22 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2023

Engaging Conversations: Chats with MPN Specialists

Travelling

increased headaches not on Aspirin

Coccyx fracture

Ruxolitinib

using pegasys during pregnancy

Combining Hydroxycarbomide with venesections?

Interferon and Hypothyroidism

When is it important to have a bone marrow biopsy?

Polychromasia in peripheral smear?

MPN specialist in Australia?

Big Question

Anagrelide (Agrylin)

Ongoing anemia

INvestigating the genetic and cellular basis of sporadic & Familial Myeloid Disorders “the INForMed study”

Metformin Use and the Risk of Myeloproliferative Neoplasms in a Danish Population Based Cohort

Delay starting hydrea for vaccines?

platelets down . Hematocrit up

Osteoporosis and PV

Start of my stem cell journey 0.3.1 ambulatory care

PRP with MPN?

Itchy rash

Peginterferon alfa 2a or Hydroxycarbamide for PV?

Can shingrix vaccination effect platelet count?

Chronic kidney disease

IVIG while having ET?

RE: My quick Hydroxy Question.

Anyone taking 325mg aspirin with 1000-1500 HU daily for ET?

Interferon effects

Start of my Stem Cell Journey 0.3

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