Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for June 2023

high cholesterol with Et

Hi husband had bloods done yesterday and platelets were 750. The nurse said his cholesterol is showing as high at 6.2. We are soo worried now. As he is...

Hi husband had bloods done yesterday and platelets were 750. The nurse said ...

Green1988

•11 months ago

6 Replies

Sudden bone pain

I was diagnosed with blood cancer (Essential Thrombocythemia) 7 years ago and then with Prostate Cancer 2 1/2 years ago. Gleeson 4+3 with bone mets in ribs,...

I was diagnosed with blood cancer (Essential Thrombocythemia) 7 years ago and th...

Stephen399b

•11 months ago

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Numbness and heaviness in legs

Hi everyone has anyone experienced heaviness and numbness in their legs. For a few years now when I was in a swimming pool I felt as if I had shoes or boots...

Hi everyone has anyone experienced heaviness and numbness in their legs. For a f...

Mudmaker

•11 months ago

12 Replies

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Pegasys Left in Syringe?

I noticed that there was a small amount of Peg left in the Syringe that I didn’t get. How can I avoid that waste?

I noticed that there was a small amount of Peg left in the Syringe that I didn’t...

russkatt

•11 months ago

4 Replies

Pegasys side effects

Hi all Started on Pegasys 11 weeks ago, at lowest dose of 45mg, suffered terribly with side effects for the first few weeks, fatigue, nausea, painful joints,...

Hi all Started on Pegasys 11 weeks ago, at lowest dose of 45mg, suffered terrib...

Lilliegarden

•11 months ago

22 Replies

allele burden MPL ET on peg

Hi . I have been on peginterferon for just over a year. Counts are now great and the MPN specialist has said complete haematological response. Just got allele...

Hi . I have been on peginterferon for just over a year. Counts are now great and...

Sprat19

•11 months ago

2 Replies

Update

I have not posted for a long time. There is not much to say. I am pleased to report that as of today my blood counts are all within normal range and I feel...

I have not posted for a long time. There is not much to say. I am pleased to rep...

Mtnlife

•11 months ago

6 Replies

can’t loose any weight!

I am an active 72 year old running 4 times a week and weight trains twice a week. I have gained 5 lbs since on Hydrea the past 2 years and no matter what diet...

I am an active 72 year old running 4 times a week and weight trains twice a week...

Sunnylesser

•11 months ago

7 Replies

myelofibrosis and interferon

Hi everybody, my name is Lee and I was diagnosed with ET (MPL EXON10) in Nov 2019. I progressed to Myelofibrosis in March 2021. I was put onto Interferon...

Hi everybody, my name is Lee and I was diagnosed with ET (MPL EXON10) in Nov 201...

Pragmaticone

•11 months ago

11 Replies

ET? PV? Neither?

Hello everyone, I’m confused by my blood tests & blood results & not sure what to do. I went to get my blood drawn for a physical & it showed high RBC, High...

Hello everyone, I’m confused by my blood tests & blood results & not sure what ...

Healthy6386

•11 months ago

13 Replies

Story from The Guardian about gas stoves and links to lymphomas and leukaemias.

https://www.theguardian.com/environment/2023/jun/20/gas-stoves-benzene-levels-study

https://www.theguardian.com/environment/2023/jun/20/gas-stoves-benzene-levels-st...

MAP44

•11 months ago

25 Replies

CALR and DNMT3A

My original diagnosis in 2017 was ET triple negative. This diagnosis and ongoing treatment has been with haematology at my local hospital. I recently, on...

My original diagnosis in 2017 was ET triple negative. This diagnosis and ongoing...

SuET2017

•11 months ago

8 Replies

Treatment choice for ET

I'm currently on Hydroxycarbamide 500/day and platelets are controlled. Looking at switching to a control drug that will ease tummy bloating. Hydroxy must be...

I'm currently on Hydroxycarbamide 500/day and platelets are controlled. Looking ...

Hidden

•11 months ago

16 Replies

tattoo

hi has anyone been given the fir ahead from there doctor to get a tattoo while on pegsy , this is d as something that I really wanted to do for me ,

hi has anyone been given the fir ahead from there doctor to get a tattoo while o...

Staroftheday

•11 months ago

1 Reply

Update - Good News on Peg

Been on a steady dose of Peg (90mcg x 2 weeks) now for about a year - it took a while to get here as I started out on 2x that dose and was doing great until...

Been on a steady dose of Peg (90mcg x 2 weeks) now for about a year - it took a ...

Solyesh

•11 months ago

9 Replies

Myelofibrosis and bone pain

how do people manage bone pain with Myelofibrosis. I used to get a dull ache in my shin bone only at night occasionally but now it is just about daily and is...

how do people manage bone pain with Myelofibrosis. I used to get a dull ache in ...

kiwitraveller

•11 months ago

16 Replies

tattoo

hi there I’ve got ET and wondered would I be able to get a tattoo?

Staroftheday

•11 months ago

8 Replies

Besremi working well- 150 mcg every month instead of bi-weekly

So, my WBC, RBC, HCT, and hemoglobin went down below the range for a couple of months. Instead of lowering the dose, the haematologist advised me to keep the...

So, my WBC, RBC, HCT, and hemoglobin went down below the range for a couple of ...

Pat032018

•11 months ago

37 Replies

Triple Negative Question

if you truly are triple negative PV for example, how does one treat that? Interferon targets the JAK2 cells & normal cells correct? Would interferon just...

if you truly are triple negative PV for example, how does one treat that? Inter...

Nrl303

•11 months ago

6 Replies

switch to Anagrelide..anything I should know ?

Hi, I have finally managed to persuade the haematologist to let me switch from HU …( which I have been taking for almost 20 years , for primary MF ) to...

Hi, I have finally managed to persuade the haematologist to let me switch from H...

CraftySpider

•11 months ago

21 Replies

To BMB or not?

Hello everyone, I’m 26 years old & have always been suffering with health anxiety. I went to get my annual physical and all was well except I had an elevated...

Hello everyone, I’m 26 years old & have always been suffering with health anxiet...

Confusingdisease

•11 months ago

1 Reply

Treatment options

Hi everyone, I'm just over a year into my treatment for PV. Hydroxycarbamide 500mg weekdays 1000mg weekends with daily 75mg aspirin. I have have monthly blood...

Hi everyone, I'm just over a year into my treatment for PV. Hydroxycarbamide 500...

Swim360

•11 months ago

11 Replies

Interferon Mood effects

Afternoon all,Been a while since I wrote on here. I met my consultant this morning,my platelets and counts are all good. But she mentioned about changing from...

Afternoon all,Been a while since I wrote on here. I met my consultant this morni...

Smudger0122

•11 months ago

9 Replies

ET, Hydroxycarbamide and cataract surgery

I have to have cataract surgery, not so much because my cataracts are so bad but because I have primary angle closure glaucoma, so I don’t really have an...

I have to have cataract surgery, not so much because my cataracts are so bad but...

Michali45

•11 months ago

34 Replies

eyesight problems

hi all, I hope you are all keeping well. Just wanted to ask people who are on Interferon, have they noticed a vast change in their eyesight or is it just...

hi all, I hope you are all keeping well. Just wanted to ask people who are on ...

Grendall

•11 months ago

6 Replies

ET and healing

Hello. Has anyone experience of slow healing/healing complications following surgery? On both occasions of punch biopsy the wounds have been slow to heal,...

Hello. Has anyone experience of slow healing/healing complications following sur...

YogaLover

•11 months ago

6 Replies

Hydroxyurea to give

Since doc change my meds to Jakafi and Pegasys, I want to give my HU 1 box (100 caps) to anyone who need it.I can to send it to MPN fellow with this treatment...

Since doc change my meds to Jakafi and Pegasys, I want to give my HU 1 box (100 ...

william-Indo

•11 months ago

12 Replies

Dr Srdan Verstovsek

I just by chance looked up Dr V today. Last time I saw him the way he told me he was “retiring” was odd. I had a suspicion that he was not really retiring....

I just by chance looked up Dr V today. Last time I saw him the way he told me h...

KLCTJC

•11 months ago

15 Replies

Update on vitamin 12 and my treatment plan for PV diagnosed in December 2022

Hi everyone I hope you are all ok I wanted to update you about the vitamin 12 to prevent mosquitos bites . Really sorry but it's vitamin b1 not 12 🙃 I got...

Hi everyone I hope you are all ok I wanted to update you about the vitamin 1...

Blonde25

•11 months ago

10 Replies

What You Need to Know About JAK Inhibitors and New Drugs in the Pipeline that are Not JAK Inhibitors

From the folks at MPN Education and Advocacy International. Sounds interesting. Date & Time: Jul 7, 2023, 01:00 PM Eastern Description:...

From the folks at MPN Education and Advocacy International. Sounds interesting....

hunter5582

•11 months ago

1 Reply

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2023

high cholesterol with Et

Sudden bone pain

Numbness and heaviness in legs

Pegasys Left in Syringe?

Pegasys side effects

allele burden MPL ET on peg

Update

can’t loose any weight!

myelofibrosis and interferon

ET? PV? Neither?

Story from The Guardian about gas stoves and links to lymphomas and leukaemias.

CALR and DNMT3A

Treatment choice for ET

tattoo

Update - Good News on Peg

Myelofibrosis and bone pain

tattoo

Besremi working well- 150 mcg every month instead of bi-weekly

Triple Negative Question

switch to Anagrelide..anything I should know ?

To BMB or not?

Treatment options

Interferon Mood effects

ET, Hydroxycarbamide and cataract surgery

eyesight problems

ET and healing

Hydroxyurea to give

Dr Srdan Verstovsek

Update on vitamin 12 and my treatment plan for PV diagnosed in December 2022

What You Need to Know About JAK Inhibitors and New Drugs in the Pipeline that are Not JAK Inhibitors

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