Posts - MPN Voice | HealthUnlocked

MPN Voice

10,431 members • 14,373 posts

All posts for March 2022

Alternative to Hydrea ?

Greetings all, I've been on Hydrea for 15 mths now (I have ET) and am concerned with a 3.5kg weight gain in that time. No amount of restrictive eating seems...

Greetings all, I've been on Hydrea for 15 mths now (I have ET) and am concerned ...

Hidden

•2 years ago

21 Replies

It has started!

Hello my friends. This is just a quick post to let you know that I am now in Southampton Hospital and have had my first lot of chemotherapy. This is debulking...

Hello my friends. This is just a quick post to let you know that I am now in Sou...

Otterfield

•2 years ago

81 Replies

Fluctuating haematocrit

Just a query re the stabilising of haematocrit via Hydroxyurea medication for PV. How difficult has it been to settle into the optimum pattern? My wife has...

Just a query re the stabilising of haematocrit via Hydroxyurea medication for P...

Strider52

•2 years ago

6 Replies

Want to take advantage of all our features? Just log in!

Who has ET struggling every day??

shiela23

•2 years ago

20 Replies

Who has ET experience very dizzy whole day and leg pain knee pain …

shiela23

•2 years ago

6 Replies

Help with taking medications

Any suggestions on how to consistently take my meds? I am not a professional pill taker ad I should be and can admit that I often do not take them just...

Any suggestions on how to consistently take my meds? I am not a professional pi...

Johnnie55

•2 years ago

12 Replies

Polycythemia vera got a mention on America’s oldest soap opera

« Writing a [rare disease] into a main character plot on daytime soap opera to our knowledge is unprecedented,” Prasad said » « The episode describes...

« Writing a [rare disease] into a main character plot on daytime soap opera to o...

Manouche

•2 years ago

1 Reply

High altitude issues if you have ET

I have ET JAK2, on hydroxyurea with platelets and other blood cells well within normal parameters. I wish to travel to Machu Picchu. I have asked my...

I have ET JAK2, on hydroxyurea with platelets and other blood cells well within ...

nightshadow

•2 years ago

10 Replies

Food after ET diagnosis.

I have read everything on diet re ET & Hydroxycarbamide which I take. Can anyone help with anything we can eat instead of the fat & saturates in all on the...

I have read everything on diet re ET & Hydroxycarbamide which I take. Can anyone...

Exeter21

•2 years ago

59 Replies

Ongoing UK testing for clinically extremely vulnerable patients

I’ve recently had a priority PCR test and a box of LFTs in the post, which I assume are as I’m on the CEV List, which is good news! What’s missing is any...

I’ve recently had a priority PCR test and a box of LFTs in the post, which I ass...

AndyT

•2 years ago

15 Replies

Do these results suggest that the MF is progressing?

For the past 3.5 years my wife has been stable platelet wise with her counts at around 300 while on hydroxycarbamide every other day and Anagrelide 3 times a...

For the past 3.5 years my wife has been stable platelet wise with her counts at ...

jointpain

•2 years ago

12 Replies

happens if a blast Phase occurs during ET? Does ASCT has dismall outcome as i read,or the sooner the better ?

If doctor diagnoses that a patient with ET enters in a BPhase, can ASCT help him if it happens in the beggining, or the outcome still remains dismal as i read?...

If doctor diagnoses that a patient with ET enters in a BPhase, can ASCT help him...

Aneliv9

•2 years ago

1 Reply

Positive Covid guidance advice

Hi, I've just taken two Lateral flow tests and both positive and recorded on the .gov site. I'm not sure on the latest guidance. Should I do anything else,...

Hi, I've just taken two Lateral flow tests and both positive and recorded on th...

NewBloom

•2 years ago

12 Replies

Effect of significant weight loss on blood counts?

I’ve been trying to get healthier with diet and exercise, and by the end of the year, will have lost 50 pounds. My understanding is that by losing weight,...

I’ve been trying to get healthier with diet and exercise, and by the end of the ...

cmc_ufl

•2 years ago

8 Replies

Focus on thalassemia and polycythemia vera.

« Silence Therapeutics’ stuttering effort to generate clinical data on SLN124 in myelodysplastic syndrome (MDS) has conked out. Facing recruitment challenges,...

« Silence Therapeutics’ stuttering effort to generate clinical data on SLN124 in...

Manouche

•2 years ago

Be the first to reply

Re: raised White cell count

Hi guys. I’m 45 years old and I’ve been diagnosed with ET for more than a year now. JAK 2 positive V617F. No marrow done since my Haematologist is very...

Hi guys. I’m 45 years old and I’ve been diagnosed with ET for more than a year n...

Family-man

•2 years ago

5 Replies

Pegasys and anxiety

Hi all, it's been a while since I've posted here last time. I had a difficult time, it probably all started with my missed miscarriage in 9th week of pregnancy...

Hi all, it's been a while since I've posted here last time. I had a difficult ti...

DariBee

•2 years ago

22 Replies

Anyone else experience worse side effects on Besremi as compared to Pegasys?

I have PV and used 90 mcg once a week for 5 1/2 years with good blood count control and only minor side effects (slightly dry eyes, slight flu like symptoms...

I have PV and used 90 mcg once a week for 5 1/2 years with good blood count cont...

monarch5000

•2 years ago

14 Replies

Back again

I am just checking in after a long gap. I joined this wonderful forum 6 years ago shortly after my PV diagnosis and was a regular reader and contributor...

I am just checking in after a long gap. I joined this wonderful forum 6 years ...

Fionnuaghla

•2 years ago

20 Replies

Why this study gives so high risk numbers from progression? I thought it was lower

https://www.bloodresearch.or.kr/journal/view.html?uid=2522&vmd=Full&

Aneliv9

•2 years ago

9 Replies

BESREMi 4th dose

Hey, guys! I see other members are sharing their move to BESREMi, so I thought I'd add my experience. As background, I was diagnosed with polycythemia vera...

Hey, guys! I see other members are sharing their move to BESREMi, so I thought I...

lynxfluff

•2 years ago

20 Replies

Query on flying

Newly diagnosed with essential thrombocythemia with cal-r mutant gene just on asprin at the moment but my question is how do i go on flying im suposed to be...

Newly diagnosed with essential thrombocythemia with cal-r mutant gene just on as...

iffs

•2 years ago

19 Replies

Pegylated Interferon

Hi I would like to ask if it is ok to take the Peg with a throat /viral infection, I am wary of skipping my fortnightly dose (45mg) LFT -ve Thankyou very...

Hi I would like to ask if it is ok to take the Peg with a throat /viral infectio...

Bobadog

•2 years ago

2 Replies

PV, Platelet dropping

My dear MPN friends, HI to all, I am from Zagreb, Croatia, I suffer from PV, and I am being treated with Hydroxycarbonide and venesections. Because of...

My dear MPN friends, HI to all, I am from Zagreb, Croatia, I suffer from PV, an...

cvita71

•2 years ago

27 Replies

Allele testing methods differ

It's come up regularly about whether allele results are accurate and whether the right test was done. I don't offer any answer here, but I came across a table...

It's come up regularly about whether allele results are accurate and whether the...

EPguy

•2 years ago

20 Replies

severe itch when contact with water

hi, does anyone else suffer with severe itch when in contact with water this happens when sweating, im on hydroxycarbamide and wonder if this is the cause....

hi, does anyone else suffer with severe itch when in contact with water this hap...

miin

•2 years ago

10 Replies

Question for Jakafi takers.

I've been on 20mgs a day of Jakafi for over a year because of an enlarged spleen. I feel fine now but had earlier ongoing stomach issues. I wanted to know if...

I've been on 20mgs a day of Jakafi for over a year because of an enlarged spleen...

Peaches230

•2 years ago

7 Replies

Great article!

I can only hope that big pharma doesn't try to crush this research.

Peaches230

•2 years ago

9 Replies

HCT 38 and feeling great

Hi All, I do hope everyone is doing well. I have been having phlebotomies since January with a goal to keep my hematocrit under 42. Last Monday, my HCT was...

Hi All, I do hope everyone is doing well. I have been having phlebotomies since ...

Wewo01

•2 years ago

11 Replies

Thanks

Many thanks to you all for your replies, to my question about the Shingrix jab. Had another conversation with Haematology nurse on Thursday, he told me that...

Many thanks to you all for your replies, to my question about the Shingrix jab. ...

Superwoman

•2 years ago

8 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2022

Alternative to Hydrea ?

It has started!

Fluctuating haematocrit

Who has ET struggling every day??

Who has ET experience very dizzy whole day and leg pain knee pain …

Help with taking medications

Polycythemia vera got a mention on America’s oldest soap opera

High altitude issues if you have ET

Food after ET diagnosis.

Ongoing UK testing for clinically extremely vulnerable patients

Do these results suggest that the MF is progressing?

happens if a blast Phase occurs during ET? Does ASCT has dismall outcome as i read,or the sooner the better ?

Positive Covid guidance advice

Effect of significant weight loss on blood counts?

Focus on thalassemia and polycythemia vera.

Re: raised White cell count

Pegasys and anxiety

Anyone else experience worse side effects on Besremi as compared to Pegasys?

Back again

Why this study gives so high risk numbers from progression? I thought it was lower

BESREMi 4th dose

Query on flying

Pegylated Interferon

PV, Platelet dropping

Allele testing methods differ

severe itch when contact with water

Question for Jakafi takers.

Great article!

HCT 38 and feeling great

Thanks

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive