Posts - MPN Voice | HealthUnlocked

MPN Voice

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All posts for August 2024

SCT Journey update No.6 (SCT day)

The day finally arrived. “Thursday 15th August 2024” After breakfast and my bed changed, I was hooked up to my lovely pink trollied pump. Pre-meds of...

The day finally arrived. “Thursday 15th August 2024” After breakfast and my b...

LFCLove

•1 month ago

33 Replies

tomorrow morning I am having a angiography done of my carotid arteries.

My question is has anyone developed atherosclerosis due to an MPN. None of this started till this year. My platelets were one million fifty seven thousand the...

My question is has anyone developed atherosclerosis due to an MPN. None of this ...

Strumin210

•1 month ago

7 Replies

NAC N-Acetylcysteine

I am wondering if anyone in this site with an MPN has taken N-Acetylcysteine (NAC)? I am aware of the research that Angela Fleischman at Irvine is doing; her...

I am wondering if anyone in this site with an MPN has taken N-Acetylcysteine (NA...

Minify

•2 months ago

12 Replies

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Allele Down on HU vs Peg

I’ve heard there is no known connection between allele burden and disease progression or status but I found it interesting to find that my CALR burden has...

I’ve heard there is no known connection between allele burden and disease progre...

George1976

•2 months ago

11 Replies

sunscreen recommendations

I have ET and am on hydroxycarbamide. I have rosacea and I am having difficulty with sun creams on my face I seem always to get a reaction in one area. My...

I have ET and am on hydroxycarbamide. I have rosacea and I am having difficulty...

Maxpenny

•2 months ago

34 Replies

ET health provision on the Fylde Coast Lancashire.

After reading your many interesting and useful entries regarding ET in particular, I wondered if anyone has experience of NHS health care for this condition,...

After reading your many interesting and useful entries regarding ET in particula...

gardner99

•2 months ago

8 Replies

Polycythemia vera Venesections

I was diagnosed with polycythemia vera 7 weeks ago. Currently taking Hydroxyurea and weekly venesections. Today 2 nurses tried 4 times to get the needle in a...

I was diagnosed with polycythemia vera 7 weeks ago. Currently taking Hydroxyurea...

MrsCPP

•2 months ago

10 Replies

Possible Essential Thrombocytheania?

Hi friends, I have just joined the fantastic organisation for help with MPN's. Sorry this is a long post but I would appreciate any help or advice you can...

Hi friends, I have just joined the fantastic organisation for help with MPN's. ...

bluebird567

•2 months ago

12 Replies

Complementary health

Hi its so helpfull reading others understanding of trying to day to day living with our health. All ways trying to think how to self help with own body issues...

Hi its so helpfull reading others understanding of trying to day to day living w...

Pen7

•2 months ago

16 Replies

Otterfield

Has anyone heard from Otterfield? Her name is Jennie and she had a SCT about a year and a half ago. She was very active on this sight until she had the...

Has anyone heard from Otterfield? Her name is Jennie and she had a SCT about a y...

Cja1956

•2 months ago

35 Replies

visual field problems

Have been having tests for just over a year for visual field abnormal. Today I saw my Nuero opthalmologist who has said Hydroxycarbamide could be the cause of...

Have been having tests for just over a year for visual field abnormal. Today I ...

130396

•2 months ago

7 Replies

B12 injections

can we have B12 injections to lower MCV and MCH.? My RBC is below range my hct is below range. Folate low B12 in serum shows in range but as we know people...

can we have B12 injections to lower MCV and MCH.? My RBC is below range my hct ...

130396

•2 months ago

21 Replies

Just Started Pegasys ( spelling error corrected)

Hi All Can some one comment and give your thought on the use of above injection for the following condition. I have just had the first 90 microgram/0.5mL of...

Hi All Can some one comment and give your thought on the use of above injection...

Stoosh

•2 months ago

15 Replies

Haploidentical SCT

Morning everyone. I'm being lined up for a Haplo SCT (nephew) possibly in September early October at Addenbrookes. Just wanted to know if anyone on here has...

Morning everyone. I'm being lined up for a Haplo SCT (nephew) possibly in Septem...

Pragmaticone

•2 months ago

7 Replies

just started Pegasus

For the last 15 years or so my platelet counts was over 450. But never been over about 540. I am now 71 years old. Recently specialist advised to go on...

For the last 15 years or so my platelet counts was over 450. But never been over...

Stoosh

•2 months ago

4 Replies

Dr. Hospital Notes

Just read other MPN patients in the UK can get results on line. I live in Wales... UK but not. If that makes sense. I have tried for over a year to get my...

Just read other MPN patients in the UK can get results on line. I live in Wales...

mag123ben

•2 months ago

16 Replies

Nottingham Forum meeting.

Hi. I just wanted to thank Maz and everyone involved in last week’s face to face forum in Nottingham. I was a bit reluctant to attend but am so pleased that I...

Hi. I just wanted to thank Maz and everyone involved in last week’s face to face...

Maurabawn

•2 months ago

7 Replies

Research study

Has anyone else signed up to the research study being done by Sanius health on the MPN Voice app? I’ve agreed they can look at my health data. I’m just...

Has anyone else signed up to the research study being done by Sanius health on t...

hall2

•2 months ago

16 Replies

Got results today

Labs weren’t too bad, but will be curious to see what they say. Wbcs 1.9, hct 39.5, PLT 176, neutrophils 1.1, lymphocytes 0.6. Alk phos was a little high,...

Labs weren’t too bad, but will be curious to see what they say. Wbcs 1.9, hct 3...

KLCTJC

•2 months ago

2 Replies

Complimentary Therapies

Last week I attended my first MPN Voice Patient Forum, in Nottingham UK.It was so nice to hear Mazcd talk about MPNs and introduce MPN specialists to talk...

Last week I attended my first MPN Voice Patient Forum, in Nottingham UK.It was s...

Lyndjs

•2 months ago

8 Replies

Good vibes!!!😊

Getting lab results later today. Wanting some good vibes! A good friend on here told me that good is good and better is goods worst enemy! What a true...

Getting lab results later today. Wanting some good vibes! A good friend on her...

KLCTJC

•2 months ago

13 Replies

Apixaban and interferon treatment

Hi there ive been on interferon since january with Essential Thrombocythemia being diagnosed then along with a blood clot in the liver and type 1 diabetic and...

Hi there ive been on interferon since january with Essential Thrombocythemia bei...

Purplechoclover

•2 months ago

2 Replies

New and undiagnosed

Hello 30M I am waiting for my first appointment with a hematologist. Unfortunately every one of them around me has been booked until October. To my...

Hello 30M I am waiting for my first appointment with a hematologist. Unfortunate...

Atlasthedog

•2 months ago

7 Replies

Hydroxycarbamide side effects

I’m wondering how many of you knew that neuropathy a listed side effect of Hydroxycarbamide . Also bilateral field vision is a listed side effect. If anyone...

I’m wondering how many of you knew that neuropathy a listed side effect of Hydro...

130396

•2 months ago

30 Replies

Update on appointments

Hi allNot been on for a while has not been a good year, a was in. Hospital end of February to 3rd of March I had a very low levels of infection made me very...

Hi allNot been on for a while has not been a good year, a was in. Hospital end o...

Jody00

•2 months ago

20 Replies

Instow1

dear friends I have ET and have been on hyroxycarbamide for 4 years Lately my gums have been sore the Hemo nurse said this was to be expected and to...

dear friends I have ET and have been on hyroxycarbamide for 4 years Lately ...

Instow1

•2 months ago

10 Replies

SCT Journey update No.5

Hi to everyone who reads this, Just thought I’d let you know that am finally in Addenbrookes hospital having chemo as we speak. Had a Hickman line fitted...

Hi to everyone who reads this, Just thought I’d let you know that am finally i...

LFCLove

•2 months ago

40 Replies

Sore joints

Hi all my hematologist puy me on an extra aisprin for 2 weeks to see hw I get on as I've been suffering with headaches again as they had been gone away for a...

Hi all my hematologist puy me on an extra aisprin for 2 weeks to see hw I get o...

VTAR24

•2 months ago

7 Replies

pain relief

My hematologist's office told me I could not take ibuprofen. Only tylenol. I am curious if you all have been told that, and if so, what do you use for pain...

My hematologist's office told me I could not take ibuprofen. Only tylenol. I ...

johnnyjumpups

•2 months ago

38 Replies

Side effects of low dose aspirin

Can anyone tell me how one can tell when "baby" aspirin taken by MPN patients is doing harm? What are the symptoms of that?

Can anyone tell me how one can tell when "baby" aspirin taken by MPN patients is...

Ovidess

•2 months ago

6 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2024

SCT Journey update No.6 (SCT day)

tomorrow morning I am having a angiography done of my carotid arteries.

NAC N-Acetylcysteine

Allele Down on HU vs Peg

sunscreen recommendations

ET health provision on the Fylde Coast Lancashire.

Polycythemia vera Venesections

Possible Essential Thrombocytheania?

Complementary health

Otterfield

visual field problems

B12 injections

Just Started Pegasys ( spelling error corrected)

Haploidentical SCT

just started Pegasus

Dr. Hospital Notes

Nottingham Forum meeting.

Research study

Got results today

Complimentary Therapies

Good vibes!!!😊

Apixaban and interferon treatment

New and undiagnosed

Hydroxycarbamide side effects

Update on appointments

Instow1

SCT Journey update No.5

Sore joints

pain relief

Side effects of low dose aspirin

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