Posts - MPN Voice | HealthUnlocked

MPN Voice

11,284 members•15,761 posts

All posts for October 2024

Interval of blood tests on commencing Hydroxycarbamide.

Hello, I am at the start of my journey having been diagnosed with ET, (CalcR), on 15th August this year. I commenced hydroxycarbamide 500mgs daily on 17th...

Hello, I am at the start of my journey having been diagnosed with ET, (CalcR), o...

Evofan

•6 months ago

23 Replies

ET Jak2

Hi Have had ET cancer for about 6 years I’m 54 Platelets have always sat around 500 to 530 Just had my bloods come back and there at 630 the only thing I...

Hi Have had ET cancer for about 6 years I’m 54 Platelets have always sat aroun...

Leepee

•6 months ago

15 Replies

Happy Halloween

Just wanted to send out good vibes to everyone today! Happy Halloween, hope everyone has a good and a safe one! My kiddo is going to be a peacock this...

Just wanted to send out good vibes to everyone today! Happy Halloween, hope eve...

KLCTJC

•6 months ago

3 Replies

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Pharmacological stress test for dizziness and breathlessness?

Due to ongoing symptoms of shortness of breath and dizziness, my GP has ordered a pharmacological nuclear stress test. Anybody else have this test or thoughts...

Due to ongoing symptoms of shortness of breath and dizziness, my GP has ordered ...

PupsBestFriends

•6 months ago

13 Replies

teardrop Rbcs following the use of medicine

Hi everyone A story has happened to me that has troubled my mind. I have been using interferon for about 4 years. At the beginning of using interferon,...

Hi everyone A story has happened to me that has troubled my mind. I have been...

Violetaaa

•6 months ago

2 Replies

joint pain

Hi all just wondering if anyone has the same issue, was diagnosed with ET JAK 2 in May, looks like I’ve had it for the past few years. I’m suffering with joint...

Hi all just wondering if anyone has the same issue, was diagnosed with ET JAK 2 ...

TB66

•6 months ago

14 Replies

Rux and IFN, risks of Dental Complications

I just got a possible Dx of tooth resorption on a tooth. Simplified this is when the immune system dissolves tooth materials from inside or outside. Usually...

I just got a possible Dx of tooth resorption on a tooth. Simplified this is whe...

EPguy

•6 months ago

30 Replies

Ruxolitinib

Hi all after being diagnosed with pv for 11 hrs taking hydroxicarbimide and having phlebotomy the last Yr and a half treatment hasn't been working so...

Hi all after being diagnosed with pv for 11 hrs taking hydroxicarbimide and...

Badger1

•6 months ago

13 Replies

chemo radiation

hi I wrote several weeks ago that I was undergoing chemo radiation for rectal cancer and had to stop my hydroxy for 8 weeks . I was worried about the outcome...

hi I wrote several weeks ago that I was undergoing chemo radiation for rectal c...

Planting

•6 months ago

6 Replies

Update EPO???

Had my 1/4ly consultation. My HCT has been hovering above 0.45 for about a year, see above. My JAK2 test has come back negative, after being positive for...

Had my 1/4ly consultation. My HCT has been hovering above 0.45 for about a yea...

shiftzz

•6 months ago

4 Replies

Peg supply update Guys

I’ve just had a face to face at Guys. No injections in stock so told to double up the last dose I have at home( 45-90mg) which will give me a 2 month gap...

I’ve just had a face to face at Guys. No injections in stock so told to double u...

Threelions

•6 months ago

7 Replies

keep working or retire

hi I joined this site about 6 months ago and have found it to be very interesting reading. This is the first time I have posted and wanted to ask if anyone...

hi I joined this site about 6 months ago and have found it to be very interestin...

Hevs67

•6 months ago

21 Replies

Referal to MNP Specialist

Hi Everyone, I plan to reach out to the MPN team at Guys and request a consultation. I have PV with early MF and I am not currently on any medication. My...

Hi Everyone, I plan to reach out to the MPN team at Guys and request a consul...

DarcyShepp

•6 months ago

4 Replies

Interferon alternative

Otis23

•6 months ago

5 Replies

MPN specialist near Nottingham

Hi Does anyone see an MPN specialist near to Nottingham,Leicester or Derby ? Not just a haematologist, if so would you mind messaging me . Thank you

Hi Does anyone see an MPN specialist near to Nottingham,Leicester or Derby ? No...

jodary

•6 months ago

40 Replies

RSV vaccine

Does anyone know if we are eligible for this if immunosuppressed but under the 75 age limit? Best Paul

Does anyone know if we are eligible for this if immunosuppressed but under the 7...

Paul123456

•6 months ago

5 Replies

Free covid tests

Thanks to all the people who replied and gave advice on getting free covid tests. After checking the NHS Web site I managed to get the free tests at Asda. I...

Thanks to all the people who replied and gave advice on getting free covid tes...

Hydrox

•6 months ago

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Anaemic ?

I have all the symptoms of anaemia and although my red blood cells have dropped whilst taking hydroxycarbomide my haematologist saysthey don’t go by them only...

I have all the symptoms of anaemia and although my red blood cells have dropped ...

jodary

•6 months ago

15 Replies

MPN struggles

Hi, so I was diagnosed 2 years ago with an MPN. Orignally they said it was ET, but after a bone marrow biopsy they have left me as unspecified. As I have...

Hi, so I was diagnosed 2 years ago with an MPN. Orignally they said it was ET, b...

WelshJess

•6 months ago

14 Replies

Hot and tingling

Hi can I ask if anyone has hot feet all the time ? I also have tingling in my fingers constant . Yesterday I started to feel ice cold on one side of my face...

Hi can I ask if anyone has hot feet all the time ? I also have tingling in my fi...

MissLesley13

•6 months ago

13 Replies

startup Besremi and what about Anagrelide?

hi, at this moment I take Anagrelide for ET, but now that I am diagnosed with PV also, I will start up Besremi. I would like to start with Besremi very slow...

hi, at this moment I take Anagrelide for ET, but now that I am diagnosed with PV...

Jomalile

•6 months ago

5 Replies

Aggressive interferon treatment needed to reach MRD in myeloproliferative neoplasms’

Professor Hasselbach said. "To prevent progression of MPN, early and aggressive treatment with interferons that act directly on bone marrow cells is essential...

Professor Hasselbach said. "To prevent progression of MPN, early and aggressive ...

Manouche

•6 months ago

7 Replies

Phlebotomies after age 70?

I am male aged 67 with PV .Diagnosed 10 years ago. Treatment plan includes 8 years of phlebotomies (~4 a year) and aspirin. In last two years I am...

I am male aged 67 with PV .Diagnosed 10 years ago. Treatment plan includes 8 ye...

Innessant

•6 months ago

12 Replies

Daisyduke40

The last two week’s migraine visual disturbances driving me mad nothing helps don’t know what to do any advice would be great

The last two week’s migraine visual disturbances driving me mad nothing helps d...

Daisyduke40

•6 months ago

16 Replies

Help with blood test results please

I have obtained at least some of my blood test results from the bloods taken at the GP surgery. The hospital are less obliging. Anyway from before 2011 (first...

I have obtained at least some of my blood test results from the bloods taken at ...

nellietheelephamt

•6 months ago

21 Replies

Hydroxyurea & Skin Cancers?

Hi I’ve had two squamous cell skin cancers in the past 6 months. I know Hydroxyurea is supposed to increase our risk of skin cancers. Does anyone know if...

Hi I’ve had two squamous cell skin cancers in the past 6 months. I know Hydroxy...

katiewalsh

•6 months ago

18 Replies

Besremi and Hives and Thyroid

This Forum is amazing and I depend on it. I'm interested in others who may have had something similar with auto-immune issues on Besremi. Apologies for the...

This Forum is amazing and I depend on it. I'm interested in others who may have...

C_Anne_Orange

•6 months ago

22 Replies

PV Update on Besremi, ~17 months in, RBC speculating improvement

I recently met with my specialist. I've gone to a number of doctors and tend to dig pretty deeply into the data. But I do love this one, incredibly...

I recently met with my specialist. I've gone to a number of doctors and tend to ...

Luthorville

•6 months ago

16 Replies

Supplements and Hydroxyurea

Hi everyone! Does CoQ10 or NAD+ interfere with Hydroxyurea and aspirin? Love this group.

Hi everyone! Does CoQ10 or NAD+ interfere with Hydroxyurea and aspirin? Love t...

digijools

•6 months ago

2 Replies

Confirmation of Essential Thrombocytheania

Hi to all the lovely people I have read about and conversed with on this site and who have given me some great advice, support and links to relevant articles...

Hi to all the lovely people I have read about and conversed with on this site an...

bluebird567

•6 months ago

5 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2024

Interval of blood tests on commencing Hydroxycarbamide.

ET Jak2

Happy Halloween

Pharmacological stress test for dizziness and breathlessness?

teardrop Rbcs following the use of medicine

joint pain

Rux and IFN, risks of Dental Complications

Ruxolitinib

chemo radiation

Update EPO???

Peg supply update Guys

keep working or retire

Referal to MNP Specialist

Interferon alternative

MPN specialist near Nottingham

RSV vaccine

Free covid tests

Anaemic ?

MPN struggles

Hot and tingling

startup Besremi and what about Anagrelide?

Aggressive interferon treatment needed to reach MRD in myeloproliferative neoplasms’

Phlebotomies after age 70?

Daisyduke40

Help with blood test results please

Hydroxyurea & Skin Cancers?

Besremi and Hives and Thyroid

PV Update on Besremi, ~17 months in, RBC speculating improvement

Supplements and Hydroxyurea

Confirmation of Essential Thrombocytheania

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