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MPN Voice

10,445 members • 14,398 posts

All posts for December 2019

On the up

My platelets are rising again on HU 1000mg 5 days 500 mg 2 days. Starting to think it's not working anymore. Haven't noticed any changes in symptoms. Feel...

My platelets are rising again on HU 1000mg 5 days 500 mg 2 days. Starting to thi...

heathermc

•4 years ago

7 Replies

Glasgow Forum

Thanks so much for organising yesterday's forum. It was really interesting to hear from the speakers and to hear of peoples experiences .It was good to meet...

Thanks so much for organising yesterday's forum. It was really interesting to he...

carlyjo

•4 years ago

1 Reply

Cancer patients more likely to die from heart disease, stroke, study found

Post by MPN-MATE Admin » Wed Dec 11, 2019 1:14 am Hey everyone... :D Here is some very good advice why we must always endeavour to remain as healthy and fit...

Post by MPN-MATE Admin » Wed Dec 11, 2019 1:14 am Hey everyone... :D Here is ...

socrates_8

•4 years ago

9 Replies

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Mouth ulcers 😡

Hi all I’m not seeing my haematologist until mid January so I thought I would ask you lovely lot if anyone has any top tips on coping with ulcers! Since...

Hi all I’m not seeing my haematologist until mid January so I thought I would as...

Louise2870

•4 years ago

7 Replies

Skin biopsy

I have a patch of skin which needs removing for biopsy from my cheek on my face I told the doctor about my condition but she didn't suggest I do anything...

I have a patch of skin which needs removing for biopsy from my cheek on my face ...

Pippa63

•4 years ago

23 Replies

need help

Hello for years my blood tests show an elevation of hematocrit and hemoglobin. the last one was 55. I was referred to a hematologist. I'm 20 years old and I'm...

Hello for years my blood tests show an elevation of hematocrit and hemoglobin. t...

Graedible

•4 years ago

9 Replies

ASH 2019 | Ropeg in polycythemia vera: long-term PROUD-PV and CONTI-PV results

https://www.vjhemonc.com/video/elvsbiyxlco-ropeg-in-polycythemia-vera-long-term-proud-pv-and-conti-pv-results/

https://www.vjhemonc.com/video/elvsbiyxlco-ropeg-in-polycythemia-vera-long-term-...

Manouche

•4 years ago

7 Replies

SMC decision regarding Ruxolitinib (Jakavi) for PV patients in Scotland

We are very pleased to announce that following a full submission made to the SMC (Scottish Medicines Consortium), a decision has been made to accept...

We are very pleased to announce that following a full submission made to the SMC...

Mazcd

Partner•4 years ago

9 Replies

Pegasys and breast feeding

Hi all, After some advice... I think that pegasys and breast feeding is contra indicated but I also think that peg is not fully approved in pregnancy? I...

Hi all, After some advice... I think that pegasys and breast feeding is contra ...

hansyhand

•4 years ago

4 Replies

Anyone on Pegasys experiencing a lowering of white blood cells?

I have been on Pegasys for PV since December 2017 and it has brought my haematocrit and platelets nicely within range. However, my last blood test showed my...

I have been on Pegasys for PV since December 2017 and it has brought my haematoc...

Marossi

•4 years ago

3 Replies

Stool test, microbiome and MPN

I am thinking about taking a stool test in order to optimize my diet and reduce inflammation. I am curious if anyone else has tried this. I have got ET.

I am thinking about taking a stool test in order to optimize my diet and reduce ...

Bohus

•4 years ago

6 Replies

Headaches and ET with hydrea

I have recently been diagnosed with ET. I had my enlarged spleen removed when I was 22 weeks pregnant because they were worried there wasn’t enough room for...

I have recently been diagnosed with ET. I had my enlarged spleen removed when I ...

ZanneZ

•4 years ago

4 Replies

Sheffield seminar

Hi I would just like to say it was great to meet people at the MPNVoice. Hope everyone enjoyed the day. I think I was the only one not on medication.

Hi I would just like to say it was great to meet people at the MPNVoice. Hope e...

JacquiSheffield

•4 years ago

2 Replies

Thank you

Just a big thank you to Maz, Nona and Dr Francis for organising the Sheffield Forum yesterday. The speakers were excellent, covering all aspects of MPNs,...

Just a big thank you to Maz, Nona and Dr Francis for organising the Sheffield Fo...

Pauline43

•4 years ago

5 Replies

Extreme fatigue

Good morning all. I never post but felt perhaps someone could help. My fatigue is so bad that I have to force myself to get out of bed. Then getting through...

Good morning all. I never post but felt perhaps someone could help. My fatigue i...

Kinsalelady

•4 years ago

39 Replies

Vitamin D

Morning!! Just wanted to share... I was feeling super fatigued of late, like sleepy all the time.. Someone reminded me about Vitamin D supplementation in the...

Morning!! Just wanted to share... I was feeling super fatigued of late, like sl...

Mrs_Average

•4 years ago

10 Replies

Wavy blood vessels at the back of the eye? Could this be associated with ET??

I had an eye test this morning and the optician said my blood vessels at the back of the eyes are a little wavy and said this can be associated with blood...

I had an eye test this morning and the optician said my blood vessels at the bac...

Camelian

•4 years ago

21 Replies

Eating only during a 10-hour window improved health for those with metabolic syndrome

Post by MPN-MATE Admin » Sat Dec 07, 2019 1:57 am https://www.mpn-mate.com/forum/viewtopic.php?f=3&t=145&p=341#p341 Hey everyone... :D I have been busy...

Post by MPN-MATE Admin » Sat Dec 07, 2019 1:57 am https://www.mpn-mate.com/foru...

socrates_8

•4 years ago

1 Reply

Haemo visit update.

Hello all, I finally managed to see the doctor at Haematology I've been trying to have an appointment with since the beginning of this year. So, one...

Hello all, I finally managed to see the doctor at Haematology I've been trying t...

azaelea

•4 years ago

2 Replies

Change from Interferon to Pegasys

At last my trust has approved the change from basic Interferon to Pegasys. I have only been allowed standard Interferon for the past year, but the last few...

At last my trust has approved the change from basic Interferon to Pegasys. I hav...

swimswam

•4 years ago

10 Replies

MNP using hydroxyurea and complaining about memory loss and fetigue

Hi, My mom was diagnosed with MNP a year ago and since then she is using hydroxyurea. Her platelet count is fine now but she is so concerned about memory loss...

Hi, My mom was diagnosed with MNP a year ago and since then she is using hydrox...

Lovelymom4

•4 years ago

11 Replies

Short video of Prof Harrison previewing Ash 2019

https://youtu.be/D5nz8j49lWE

Paul123456

•4 years ago

3 Replies

Leg Pain / Cramps

Another night of excruciating leg pains / cramps, is anyone on medication that actually helps with pain? I have MPL/ET on Peg @ LD Aspirin, for pain relief I...

Another night of excruciating leg pains / cramps, is anyone on medication that a...

Raphael_UK

•4 years ago

27 Replies

Polycythemia and fatigue

I'm new on this list. I was diagnosed six months ago with Polycythemia vera. I'm experiencing a lot of fatigue. It makes me so tired that sometimes I can't...

I'm new on this list. I was diagnosed six months ago with Polycythemia vera. I...

souplover

•4 years ago

24 Replies

CBD oil help

Is anyone of jakafi and warfarin and takes CBD oil for pain? Has it had any affects on medication or platelet counts? Tia

Is anyone of jakafi and warfarin and takes CBD oil for pain? Has it had any affe...

Vickz299

•4 years ago

3 Replies

PV Jak2+ Just beginning Hydroxycarbamide

After many years of saying no - I've given in and start Hydroxycarbamide today. My poor veins have had enough, and venesection, even with the vascular scan...

After many years of saying no - I've given in and start Hydroxycarbamide today. ...

Kari1961

•4 years ago

26 Replies

Hair and Pegasys

Hi since starting Pegasys a few months ago I haven't had hair loss but my hair has become rather dry and brittle. Can anyone recommend any shampoos and...

Hi since starting Pegasys a few months ago I haven't had hair loss but my hair h...

hall2

•4 years ago

9 Replies

New to HU

Hi I’m starting HU tomorrow. I’ve been taking Pegasys for 9 months with limited results. I’ve got a platelet count of 1900 and amongst other symptoms...

Hi I’m starting HU tomorrow. I’ve been taking Pegasys for 9 months with limited ...

Charlieapple2018

•4 years ago

49 Replies

East Dorset

Hi, does anyone with an MPN live in East Dorset? I have ET and live in Wimborne. Would be nice to meet up. Thanks Suzy.

Hi, does anyone with an MPN live in East Dorset? I have ET and live in Wimborne....

SDJD

•4 years ago

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Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for December 2019

On the up

Glasgow Forum

Cancer patients more likely to die from heart disease, stroke, study found

Mouth ulcers 😡

Skin biopsy

need help

ASH 2019 | Ropeg in polycythemia vera: long-term PROUD-PV and CONTI-PV results

SMC decision regarding Ruxolitinib (Jakavi) for PV patients in Scotland

Pegasys and breast feeding

Anyone on Pegasys experiencing a lowering of white blood cells?

Stool test, microbiome and MPN

Headaches and ET with hydrea

Sheffield seminar

Thank you

Extreme fatigue

Vitamin D

Wavy blood vessels at the back of the eye? Could this be associated with ET??

Eating only during a 10-hour window improved health for those with metabolic syndrome

Haemo visit update.

Change from Interferon to Pegasys

MNP using hydroxyurea and complaining about memory loss and fetigue

Short video of Prof Harrison previewing Ash 2019

Leg Pain / Cramps

Polycythemia and fatigue

CBD oil help

PV Jak2+ Just beginning Hydroxycarbamide

Hair and Pegasys

New to HU

East Dorset

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