Posts - MPN Voice | HealthUnlocked

MPN Voice

10,521 members • 14,537 posts

All posts for February 2023

Bone marrow transplant

Hi, I am being offered a bone marrow transplant and wonder if anyone can offer me positive advice. Obviously the process is quite scary, but would like to...

Hi, I am being offered a bone marrow transplant and wonder if anyone can offer m...

Georgehb

•1 year ago

50 Replies

Nail Changes on HU

Is anyone else experiencing nail color changes? I take hydroxyurea and a couple of my nails are darker than the others. I showed to hematologist and he acted...

Is anyone else experiencing nail color changes? I take hydroxyurea and a couple...

Smoothie2020

•1 year ago

9 Replies

Just saw MPN Specialist | ET+CALR

Last week I saw an MPN Specialist at Stanford in Palo Alto, CA (Dr. Gotlib) and it was nothing short of AMAZING! I waited months for this appointment so by the...

Last week I saw an MPN Specialist at Stanford in Palo Alto, CA (Dr. Gotlib) and ...

Zeppelin11

•1 year ago

11 Replies

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Covid has caught up on me

I've managed to avoid covid for the last couple of years. Unfortunately, I had a positive result a couple of days ago. I contacted oncology helpline line, they...

I've managed to avoid covid for the last couple of years. Unfortunately, I had a...

linphy

•1 year ago

11 Replies

Thrombocytosis…..ET? UPDATE

Hi everyone, so it’s been over a year since my last post and in that time my high platelets saga is still ongoing…. I have been quiet on here as I’ve struggled...

Hi everyone, so it’s been over a year since my last post and in that time my hig...

Purdy13

•1 year ago

26 Replies

Covid finally caught up with me

There has been a supposed “chest infection” doing the rounds in this place for the last couple of weeks. Yesterday both my husband and I felt unwell with...

There has been a supposed “chest infection” doing the rounds in this place for t...

jillydabrat

•1 year ago

31 Replies

Prof Claire Harrison on significance of VAF monitoring

https://youtu.be/WifYlSTmWn4

Paul123456

•1 year ago

16 Replies

Jac 2

hi everyone, I have had mpn for about eight years now and have all the heat problems and very sensitive skin…I use bamboo sheets and nighties etc, cut tags off...

hi everyone, I have had mpn for about eight years now and have all the heat prob...

Chinaplatejules

•1 year ago

7 Replies

Update on appointment

Hi all Had my appointment yesterday with another different Dr has there on short on staff was waiting a couple of hours after my blood test to get seen has...

Hi all Had my appointment yesterday with another different Dr has there on shor...

Jody00

•1 year ago

8 Replies

Hair Loss on Hydrea

I too loss lots of hair while taking Hydrea, then Anagrelide, and finally Jakafi. After starting to an MPN Specialist almost 2 yrs ago & switching to Pegasys,...

I too loss lots of hair while taking Hydrea, then Anagrelide, and finally Jakafi...

Golfersmom

•1 year ago

3 Replies

Hair and ET treatment.

Hi Folks, just doing some research before my next appointment for my ET review in a few weeks time. I have been on Hydroxycarbomide for almost three years now...

Hi Folks, just doing some research before my next appointment for my ET review i...

Janis12

•1 year ago

50 Replies

Critical illness cover for ET

Hi, my husband who is 50 has just been diagnosed with ET CALR following a bone marrow biopsy. Initially he went to the doctor for a well man check which...

Hi, my husband who is 50 has just been diagnosed with ET CALR following a bon...

Morris941

•1 year ago

16 Replies

Good appt with MPN Specialist

Saw my MPN specialist today. Marks first 3-month appointment since diagnosis in Dec 2020 (until this time I had monthly or every 6 week appointments). As this...

Saw my MPN specialist today. Marks first 3-month appointment since diagnosis in ...

Solyesh

•1 year ago

3 Replies

Why is the hct threshold for females 42/43 in USA but 45 in UK. I'm in UK and it troubles me......

I live in UK, have PV, and on interferon which is working well. My doc has always been happy with my count being 45 or under. Why in USA is the hit lower?

I live in UK, have PV, and on interferon which is working well. My doc has alway...

Looolooo

•1 year ago

24 Replies

Research for ET

23 and Me is conducting research on ET so if you have the diagnosis, you can get a free test kit by answering health questions. I've entered myself and...

23 and Me is conducting research on ET so if you have the diagnosis, you can get...

yippinurse

•1 year ago

5 Replies

Finding a MPN specialist

I live on the Lincolnshire Nottinghamshire border and currently are under the care of a Lincs haematologist for ET. The last few appts have been Locums....

I live on the Lincolnshire Nottinghamshire border and currently are under the ca...

Pippapot

•1 year ago

11 Replies

Hydrea and mouth sores

What do you find works best for treating mouth sores ? Thank you in advance😊

IrishHiker

•1 year ago

25 Replies

diagnosed with Polycythemia Vera

Hi everyone It was confirmed yesterday that I have been diagnosed with Polycythemia Vera . They said 20% of my bone marrow has been affected. They are...

Hi everyone It was confirmed yesterday that I have been diagnosed with Polycyt...

Blonde25

•1 year ago

17 Replies

Depression, anxiety and irritability on peginterferon

Are people who are already taking anti depressants finding that they have to up their doses after taking peginterferon for pv?

Are people who are already taking anti depressants finding that they have to up ...

Hollyhedge

•1 year ago

9 Replies

Peginterferon lambda: Promising Results for New COVID Treatment

"Peginterferon lambda has tremendous therapeutic potential, and we continue to see the emergence of aggressive variants of the virus spreading around the globe...

"Peginterferon lambda has tremendous therapeutic potential, and we continue to s...

Manouche

•1 year ago

3 Replies

3 cm cyst on spleen

I was diagnosed with Post ET / MF approximately 5 years ago, CALR mutation, had an ultrasound on my spleen yesterday, it showed enlarged spleen with a 3 cm...

I was diagnosed with Post ET / MF approximately 5 years ago, CALR mutation, had ...

flog

•1 year ago

4 Replies

a little good news

Hi guys I have primary MF Cal-r positive. My blood cells have been gradually going south. My red blood cells has been low as 88 and my platelets were 47 but...

Hi guys I have primary MF Cal-r positive. My blood cells have been gradually go...

Grizly

•1 year ago

14 Replies

Anyone under the MPN specialist team at the Oxford hospitals?

My husband and I both have ET and are considering moving to the Cotswolds area. Do any of you have experience of the specialist team in the Oxford hospitals?...

My husband and I both have ET and are considering moving to the Cotswolds area. ...

Na56

•1 year ago

17 Replies

Update appointment

Hi all, Been on 90mg pegasys interferon alpha 4 weeks now ,no side effects apart from a little cold tired after I've inject myself,after few days a do feel...

Hi all, Been on 90mg pegasys interferon alpha 4 weeks now ,no side effects apar...

Jody00

•1 year ago

7 Replies

New question Can interferon injections cause High BP ?

Can interferon injections cause high BP ? Does anybody have high BP and can still use interferon ?

Can interferon injections cause high BP ? Does anybody have high BP and can sti...

Hidden

•1 year ago

5 Replies

Covid vaccines

What is the latest regarding Covid booster. I have had 6 vaccines and wondered if I should have another before they finish on the 12th of February. It says on...

What is the latest regarding Covid booster. I have had 6 vaccines and wondered i...

Hydrox

•1 year ago

20 Replies

JAK2V617F Allele Burden in Polycythemia Vera: Burden of Proof

Polycythemia vera (PV) is a hematopoietic stem cell (HSC) neoplasm defined by activating somatic mutations in the JAK2 gene and characterized clinically by...

Polycythemia vera (PV) is a hematopoietic stem cell (HSC) neoplasm defined by ac...

Manouche

•1 year ago

3 Replies

Neely Diagnosed

I was diagnosed last August with ET, MPL mutation and platelets between 700-800 range. It has been very hard for me to deal with because I have medical...

I was diagnosed last August with ET, MPL mutation and platelets between 700-800...

Plrc

•1 year ago

14 Replies

Fragmin and aspirin

Hi again, Injured myself, like I wrote below, and have therefore been shooting 5000 IU of Fragmin every day, and not sure when I am allowed to quit it. I am...

Hi again, Injured myself, like I wrote below, and have therefore been shooting ...

Bigcheat

•1 year ago

3 Replies

ET JAK 2+ CBD patches

So after suffering from breathlessness for 3 years or more and being told by lung consultant that it was due to putting on a bit of weight I paid privately to...

So after suffering from breathlessness for 3 years or more and being told by lun...

130396

•1 year ago

9 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2023

Bone marrow transplant

Nail Changes on HU

Just saw MPN Specialist | ET+CALR

Covid has caught up on me

Thrombocytosis…..ET? UPDATE

Covid finally caught up with me

Prof Claire Harrison on significance of VAF monitoring

Jac 2

Update on appointment

Hair Loss on Hydrea

Hair and ET treatment.

Critical illness cover for ET

Good appt with MPN Specialist

Why is the hct threshold for females 42/43 in USA but 45 in UK. I'm in UK and it troubles me......

Research for ET

Finding a MPN specialist

Hydrea and mouth sores

diagnosed with Polycythemia Vera

Depression, anxiety and irritability on peginterferon

Peginterferon lambda: Promising Results for New COVID Treatment

3 cm cyst on spleen

a little good news

Anyone under the MPN specialist team at the Oxford hospitals?

Update appointment

New question Can interferon injections cause High BP ?

Covid vaccines

JAK2V617F Allele Burden in Polycythemia Vera: Burden of Proof

Neely Diagnosed

Fragmin and aspirin

ET JAK 2+ CBD patches

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