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MPN Voice

10,445 members • 14,398 posts

All posts for November 2022

Inflammation and ET..

Hi all, Ive been on this forum since being diagnosed in 2015 with ET. No meds as yet but aged 64 and platelets 800+, I know it’s only a matter of time… But...

Hi all, Ive been on this forum since being diagnosed in 2015 with ET. No meds a...

JaynieQ

•1 year ago

16 Replies

Spleen pain

I am waiting for an appointment for a scan of my spleen as I am getting a lot of pain from it, more so since my iron infusion. It seemed to settle down for a...

I am waiting for an appointment for a scan of my spleen as I am getting a lot of...

lizzziep

•1 year ago

6 Replies

Odd symptoms for MPN

Quick question out of curiosity from this invaluable group:Does anyone have any unusual/atypical symptoms that isn't necessarily directly linked to your MPN...

Quick question out of curiosity from this invaluable group:Does anyone have any ...

Emmyroos

•1 year ago

15 Replies

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A Moan

Quick Moan,I had a phone appointment booked back in May 2022, for today's date Monday 21st November at 10.30am for consultation with Guy's Hospital. I sat...

Quick Moan,I had a phone appointment booked back in May 2022, for today's date M...

Smudger0122

•1 year ago

10 Replies

bone marrow biopsy

Do you get results of bone marrow biopsy over the phone or do you see the doctor

glyndale

•1 year ago

15 Replies

ET and cerebral vasculitis

Does anyone else on here have both these conditions

Ljohn456

•1 year ago

1 Reply

venesections over the long term

I was diagnosed with PV in January 21 when I was being treated for a malignant melanoma and the surgeon wanted to do a lymph node biopsy. my red blood cell...

I was diagnosed with PV in January 21 when I was being treated for a malignant m...

Paul1214

•1 year ago

8 Replies

Update

I've just had phone hospital appointment Dr. Said bloods perfect!! My platelets are now 520 . I thought they would want me to up hydroxicarbamide...

I've just had phone hospital appointment Dr. Said bloods perfect!! My platelets...

Mostew

•1 year ago

13 Replies

high platelet count

my platelet count is 451. Is that high, if so what will the doctors do as far as treatments

my platelet count is 451. Is that high, if so what will the doctors do as far as...

Twinnotes

•1 year ago

24 Replies

Interferon side effects of

HelloI recently stopped taking Hydroxy after 2 years and changed to Pegusus Interferon and in many ways feel better. I had my first dose of 30 micrograms on...

HelloI recently stopped taking Hydroxy after 2 years and changed to Pegusus Int...

Hidden

•1 year ago

28 Replies

Medicare question: Traditional or Advantage?

Unfortunately, my ET diagnosis comes right at the time when I start Medicare, and I now have just a week to make my choice for the first year:...

Unfortunately, my ET diagnosis comes right at the time when I start Medicare, an...

Ovidess

•1 year ago

45 Replies

Ramipril side effects

Been on Ramipril for 3 weeks. Got diarrhoea and cold extremities which I've never had . Tempted to stop and see if symptoms stop. Advice and experiences...

Been on Ramipril for 3 weeks. Got diarrhoea and cold extremities which I've neve...

Bertyboy

•1 year ago

6 Replies

What happens next?

I have recently been told by my GP on a telephone consultation that I have ET. No explanation of what it is other then ‘It’s a platelet thing and just making...

I have recently been told by my GP on a telephone consultation that I have ET. N...

BarnyKat

•1 year ago

17 Replies

Does Vit K2 elevate platelets

Hello everyone I have ET and on hydroxycarbemide 9 tablets a week. My platelets are down to 415 and I take Vit D3 4000 iu per day. I’ve heard that Vit K2...

Hello everyone I have ET and on hydroxycarbemide 9 tablets a week. My platelets ...

Na56

•1 year ago

15 Replies

Advice needed.

Good morning everyone, I have ET jac2+ and have been taking hydroxcarbamide for the last 2 years, in November 2021 all protocols for my little problem was sent...

Good morning everyone, I have ET jac2+ and have been taking hydroxcarbamide for ...

Jules153

•1 year ago

44 Replies

ET Jak 2+ Pegasys working well but ...

Just thought I'd write an update. Any information I have on MPN has been obtained from this site, which i am very grateful for. I thought that my explaining my...

Just thought I'd write an update. Any information I have on MPN has been obtaine...

Izzys-Mum

•1 year ago

25 Replies

Finnish sauna - yes or no

Hi, I was searching some info whether us with PV diagnosed can go to sauna. I used to go to sauna quite often before I was diagnosed and before I had any...

Hi, I was searching some info whether us with PV diagnosed can go to sauna. I ...

DariBee

•1 year ago

15 Replies

Numb leg

I was diagnosed with ET last May, I take an aspirin a day and get a telephone consultation from haematology every six months, my next one due in Dec, for the...

I was diagnosed with ET last May, I take an aspirin a day and get a telephone co...

doglover49

•1 year ago

6 Replies

Is taking vitamin D3 5000 everyday lowering RBC , HCT ?

I stopped taking thromboreductin 2 months ago, still taking hydroxyurea 3 perday ( was 2 and 3 alternately when combined with thromboreductin) and started...

I stopped taking thromboreductin 2 months ago, still taking hydroxyurea 3 perda...

askforlife

•1 year ago

20 Replies

any similar experience?

Hello friends, I did a chest X-ray following a bad flu to check for pneumonia which I didn’t have. The x-ray showed a prominent pulmonary artery. My doctor...

Hello friends, I did a chest X-ray following a bad flu to check for pneumonia wh...

Yarw

•1 year ago

7 Replies

CATCH-UP ET JAK2+

Hello my friends. It’s a while since I wrote about my various problems and said aid report back. My main problem was pain under ribs in right abdomen, which...

Hello my friends. It’s a while since I wrote about my various problems and said ...

azaelea

•1 year ago

15 Replies

CURE educated patient MPN Forum Saturday November 19

For those interested there is a MPN educated patient forum this Saturday Nov 19 at 11am EDT. You can register and attend this online summit for no charge. I...

For those interested there is a MPN educated patient forum this Saturday Nov 19...

Meatloaf9

•1 year ago

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More spleen chat

Hi I have MF diagnosed in February I am on Jakavi 20 twice daily started at the end of March . Since before I was diagnosed with MF I have had spleen...

Hi I have MF diagnosed in February I am on Jakavi 20 twice daily started at ...

Margo18

•1 year ago

5 Replies

Re - feeling my spleen

Thank you for all advice. I have finally got hold of the Specialist Clinical Nurse, a lot easier said than done! She is arranging an ultrasound to check if the...

Thank you for all advice. I have finally got hold of the Specialist Clinical Nur...

lizzziep

•1 year ago

3 Replies

Why do we use IFN-α vs IFN-β? Might IFN-β be preferred?

I've discussed IFN types before. Some interesting info here that INF-β might be better to reduce inflammation/progression. ---- A recent post noted that...

I've discussed IFN types before. Some interesting info here that INF-β might b...

EPguy

•1 year ago

3 Replies

My Story

Hello everyone, I have been reading random posts on MPN voice but have not posted yet. So, this is my first post. Here goes. I always go for regular...

Hello everyone, I have been reading random posts on MPN voice but have not post...

Director1157

•1 year ago

30 Replies

friendly advice and friendly people

just want to say a big thank you to all you that help us that are new on this journey it means so much

just want to say a big thank you to all you that help us that are new on this j...

Cat1001954

•1 year ago

2 Replies

Glad to be back.

I seem to have been been locked out for a while, after an IT problem. Hope I can manage to get started again.

I seem to have been been locked out for a while, after an IT problem. Hope I ...

MoNut

•1 year ago

2 Replies

Can you ‘feel’ your spleen?

I’ve been feeling pressure, not particularly pain, under my ribs on the left for a while. I’ve mentioned this to haematology but no reaction from them. I can...

I’ve been feeling pressure, not particularly pain, under my ribs on the left for...

lizzziep

•1 year ago

18 Replies

Fedratinib users

How long before your spleen began to shrink

Scaredy_cat

•1 year ago

2 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2022

Inflammation and ET..

Spleen pain

Odd symptoms for MPN

A Moan

bone marrow biopsy

ET and cerebral vasculitis

venesections over the long term

Update

high platelet count

Interferon side effects of

Medicare question: Traditional or Advantage?

Ramipril side effects

What happens next?

Does Vit K2 elevate platelets

Advice needed.

ET Jak 2+ Pegasys working well but ...

Finnish sauna - yes or no

Numb leg

Is taking vitamin D3 5000 everyday lowering RBC , HCT ?

any similar experience?

CATCH-UP ET JAK2+

CURE educated patient MPN Forum Saturday November 19

More spleen chat

Re - feeling my spleen

Why do we use IFN-α vs IFN-β? Might IFN-β be preferred?

My Story

friendly advice and friendly people

Glad to be back.

Can you ‘feel’ your spleen?

Fedratinib users

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