Posts - MPN Voice | HealthUnlocked

MPN Voice

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All posts for April 2021

Question about LDH

Hello, fellow mpn friends, I have post Et Mf and my hematologist has been checking my LDH levels at each check-up for the last year and a half. The last 2...

Hello, fellow mpn friends, I have post Et Mf and my hematologist has been checki...

Cja1956

•3 years ago

17 Replies

Aspirin dose for ET update.

I saw my awesome new haematologist yesterday and queried her about the prescribed twice daily aspirin, she cited this study below and confirmed ET patients...

I saw my awesome new haematologist yesterday and queried her about the prescribe...

Magentas

•3 years ago

17 Replies

Doctor visits/year average with ET?

I was diagnosed with ET JAK2 Jan of this year and put on HU. Fortunately I responded well to it and my platelets are decreasing, possibly within an acceptable...

I was diagnosed with ET JAK2 Jan of this year and put on HU. Fortunately I resp...

nightshadow

•3 years ago

19 Replies

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HU affects blood pressure?

I have been on HU since Jan this year and my blood pressure has been slowly decreasing (in my case, a good thing). Has anyone else seen a similar response...

I have been on HU since Jan this year and my blood pressure has been slowly decr...

nightshadow

•3 years ago

9 Replies

HU dose adjustment

Jus t started on HU about. A month ago.I amJAK2+ withPV.My question is how long does it take to get the correct dose adjusted? Thanks in advance for your...

Jus t started on HU about. A month ago.I amJAK2+ withPV.My question is how long ...

Ridenez

•3 years ago

8 Replies

Is there anyway I can lower my platelet count?

Is there anyway I can lower my platelet count? Anything I should eat or do? Last month JAK2 mutation was detected after a test and my Hematologist says I can...

Is there anyway I can lower my platelet count? Anything I should eat or do? Last...

livelovelaugh1992

•3 years ago

19 Replies

Pegasys and high levels of liver enzyme or

Hi everyone! I was diagnosed with PV Jak2 back in 2012 and was advised to continue aspirin regimen with Phlebotomys every 3 months as I was not high risk. So,...

Hi everyone! I was diagnosed with PV Jak2 back in 2012 and was advised to contin...

ritaandscooter1

•3 years ago

4 Replies

Opinions about Hydroxyurea, vaccination and pregnancy with ET.

Hi everyone. My name is Kristina and I'm 32 years old diagnosed with ET. I discovered that my platelets were high in 2007, but was diagnosed with ET few years...

Hi everyone. My name is Kristina and I'm 32 years old diagnosed with ET. I disc...

Kristina-T

•3 years ago

9 Replies

Oh dear

Update on me taking HU perhaps I shouldn’t be on here for a while . Just read ‘will I get used to it’. And comments And am even more hesitant to start .......

Update on me taking HU perhaps I shouldn’t be on here for a while . Just read ‘...

Mostew

•3 years ago

29 Replies

environmental or other causes of PV & other MPNs?

Hi everyone, Lately I find myself wondering where my PV originated. Recently toxic PFAS chemicals were found in our town drinking water. Have chemicals like...

Hi everyone, Lately I find myself wondering where my PV originated. Recently ...

souplover

•3 years ago

22 Replies

HU and melanoma risk

Hi All I have read that it is important to protect yourself from the sun, while on HU. I have been taking precautions, most of the time. My concern is that my...

Hi All I have read that it is important to protect yourself from the sun, while ...

Wewo01

•3 years ago

39 Replies

Anemia with ET

I start to have anemia with normal ferritin I have ET CALR type 2 since 17 years what does that mean progression?

I start to have anemia with normal ferritin I have ET CALR type 2 since 17 year...

Artemide

•3 years ago

6 Replies

Anyone on Ropeginterferon (Besremi)?

Hi gang! Wondering if anyone has switched from Pegasys (peginterferon) to Besremi (ropeginterferon)? I’ve read that side effects, particularly fatigue, are...

Hi gang! Wondering if anyone has switched from Pegasys (peginterferon) to Besre...

IrishSarah

•3 years ago

7 Replies

Revlimid (lenalidomide) for MPN anemia?

Has anyone taken Revlimid (lenalidomide) for anemia due to MPN? My oncologist has recommended this. The cost is approximately $15,000 to $17.000 USD per...

Has anyone taken Revlimid (lenalidomide) for anemia due to MPN? My oncologist ...

goodluckjoe

•3 years ago

13 Replies

Red spots

Hi I've been find little red spots mainly on my body, a few on my legs and arms. There are not a lot of them but they don't get a head on them, they just seem...

Hi I've been find little red spots mainly on my body, a few on my legs and arms....

netty64

•3 years ago

19 Replies

Has anyone had a Covid vaccine antibody test?

Hi I emailed government on the effectiveness of the vaccine on cancer patients to see what they are doing for us as the Covid vaccine has been published as...

Hi I emailed government on the effectiveness of the vaccine on cancer patients t...

PhilReade

•3 years ago

20 Replies

Has anyone had a Covid 19 vaccine antibody test ?

Vaccine protection for blood cancer patients is lower than people who are healthy this is a Goverment response to what are they doing for us to protect us

Vaccine protection for blood cancer patients is lower than people who are health...

PhilReade

•3 years ago

6 Replies

Do sudden blasts necessarily mean progression?

Husband was diagnosed with prefibrotic myelofibrosis a year ago. Rubuxiltnib really helped calm his numbers and shrink his spleen down. A week ago blasts...

Husband was diagnosed with prefibrotic myelofibrosis a year ago. Rubuxiltnib rea...

TM76

•3 years ago

6 Replies

Leg Weakness?

I am JAK2+ PV and am experiencing some leg weakness when walking. Is anyone else experiencing the same thing? Any comments or information appreciated.Thank...

I am JAK2+ PV and am experiencing some leg weakness when walking. Is anyone else...

Ridenez

•3 years ago

6 Replies

Duloxetine 30mg

Hi everyone, hope you are enjoying the sun🌞 😃 well we’re in Wales UK so maybe your not so lucky today. So I’ve been on Rux for a while which I’m pleased to...

Hi everyone, hope you are enjoying the sun🌞 😃 well we’re in Wales UK so maybe ...

StreetPastor

•3 years ago

16 Replies

Let’s Get Together and Participate in #5kMAY Fundraising for MPN Voice

Hooray – some freedom!! Spring is here, we can get out and enjoy the fresh air with family and friends (Covid friendly of course). So, in conjunction with...

Hooray – some freedom!! Spring is here, we can get out and enjoy the fresh air ...

Mazcd

Partner•3 years ago

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Advise on timing of covid jab and Pegasys injection

I’m due my second AZ vaccine next week, and whilst I have no doubts about going ahead with it, my weekly Pegasys jab falls the next day. I wondered if there...

I’m due my second AZ vaccine next week, and whilst I have no doubts about going...

swimswam

•3 years ago

6 Replies

Good News. Update on previous posts.

Having stopped HU on the instructions of A&E and my Haemo still insisting that breathing problems not caused by HU I requested GP to refer me to Dr Claire...

Having stopped HU on the instructions of A&E and my Haemo still insisting that b...

Heather270240

•3 years ago

29 Replies

Appointment

Hi everyone, I received a call late this evening from my haematology secretary. My results came back today and I have a follow-up appointment on next...

Hi everyone, I received a call late this evening from my haematology secretary...

De12

•3 years ago

5 Replies

Update

At last after much soul searching and support from you all and lovely Hemo nurses and Ayurvedic Anne I have AT LAST decided to try Meds . Every other day...

At last after much soul searching and support from you all and lovely Hemo nur...

Mostew

•3 years ago

9 Replies

Telephone appointment at Guy's

Sorry to post twice in one day! I have just heard that I have a telephone appointment with an MPN specialist at Guy's next month. I am so pleased and grateful...

Sorry to post twice in one day! I have just heard that I have a telephone appoin...

Otterfield

•3 years ago

5 Replies

ET and Astra Zeneca

Is it ok to have the Astra Zeneca vaccine when you have ET

Madforgolf

•3 years ago

11 Replies

Please 😁

lizzziep

•3 years ago

5 Replies

Clumping platelets?

Does anyone here know anything about possible clumping platelets? My platelets have been dropping steadily and are now at 49. I don't have any bruising or...

Does anyone here know anything about possible clumping platelets? My platelets h...

Otterfield

•3 years ago

12 Replies

Adeyababa with ET

Hello friends, I am from Ethiopia and I take Asprin daily and ferrous sulfate daily. My platelet number was 987, 000 last month when I tested. I was covid...

Hello friends, I am from Ethiopia and I take Asprin daily and ferrous sulfate da...

Adeyabeba

•3 years ago

5 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for April 2021

Question about LDH

Aspirin dose for ET update.

Doctor visits/year average with ET?

HU affects blood pressure?

HU dose adjustment

Is there anyway I can lower my platelet count?

Pegasys and high levels of liver enzyme or

Opinions about Hydroxyurea, vaccination and pregnancy with ET.

Oh dear

environmental or other causes of PV & other MPNs?

HU and melanoma risk

Anemia with ET

Anyone on Ropeginterferon (Besremi)?

Revlimid (lenalidomide) for MPN anemia?

Red spots

Has anyone had a Covid vaccine antibody test?

Has anyone had a Covid 19 vaccine antibody test ?

Do sudden blasts necessarily mean progression?

Leg Weakness?

Duloxetine 30mg

Let’s Get Together and Participate in #5kMAY Fundraising for MPN Voice

Advise on timing of covid jab and Pegasys injection

Good News. Update on previous posts.

Appointment

Update

Telephone appointment at Guy's

ET and Astra Zeneca

Please 😁

Clumping platelets?

Adeyababa with ET

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