Posts - MPN Voice | HealthUnlocked

MPN Voice

10,434 members • 14,381 posts

All posts for June 2022

Update - pending PV Dx - Received copy of records

Hi all I have started to receive my patient records as requested. I have gone through them and pulled out lab results going back to 2016. Looks like Lab sent a...

Hi all I have started to receive my patient records as requested. I have gone th...

LittleLuna

•2 years ago

5 Replies

Calr difference type 1 and 2?

What’s the difference between Calr type 1 and type 2? Thanks

Green1988

•2 years ago

2 Replies

PV: cold extremities

I've been experiencing this lately. It was paticularly bad in the winter but is still there in the warmer weather. I'm guessing that this may be a circulatory...

I've been experiencing this lately. It was paticularly bad in the winter but is ...

sbs_patient

•2 years ago

5 Replies

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PV: abnormal sensation in feet

I was diagnosed with PV in 2015. After about a year, I noticed some loss of sensation (paresthesia) in some of my left toes. Neurological investigation found...

I was diagnosed with PV in 2015. After about a year, I noticed some loss of sens...

sbs_patient

•2 years ago

9 Replies

Kidney Tumour Update

Thank you to everyone who replied to my original post about my kidney tumour. So I saw the consultant today, who thankfully was a very pleasant chap, the...

Thank you to everyone who replied to my original post about my kidney tumour. So...

Trueblue8

•2 years ago

11 Replies

Walking safely

Hi everyone, I am 74 ET jak2+ 12 years. I recently walked 608 km in 30 days on the Camino to Santiago Pilgrimage walk in Spain with my family. I walked using...

Hi everyone, I am 74 ET jak2+ 12 years. I recently walked 608 km in 30 days on ...

Hydrox

•2 years ago

23 Replies

Skin changes on hydroxycarbamide

Hi I’m interested to know if anyone else has had skin changes on long term hydroxycarbamide I’m on 1500 mg daily over 7 days This has had a dramatic change...

Hi I’m interested to know if anyone else has had skin changes on long term hydr...

PhilReade

•2 years ago

45 Replies

PV Trial

https://brcrpatients.com/usa/polycythemia-vera-fl-us/?fbclid=IwAR24P8Drpgz7JvpXW6tPwI4FtVib1-z_XoFhqmL5_QcRYgNE7vihpWuaTOg

https://brcrpatients.com/usa/polycythemia-vera-fl-us/?fbclid=IwAR24P8Drpgz7JvpXW...

Barbiebreath

•2 years ago

8 Replies

Update 6.7

A few items of note. CBC numbers are pretty stable from two weeks ago. HCT is OK at 45.3%. PLT is at 313. WBC is low at 2.72. I remain in lymphopenia at...

A few items of note. CBC numbers are pretty stable from two weeks ago. HCT is ...

hunter5582

•2 years ago

26 Replies

Triple Neg ET often has non-drivers

I just came across this report. It may be one reason to get a full genetic panel if you're triple neg. 82.5% had non-drivers, I think this is much higher...

I just came across this report. It may be one reason to get a full genetic pane...

EPguy

•2 years ago

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Haematolist appointment

Hi all had my 3 months appointment over week she ask how I was doing firstly said okays apart from my pins needles getting worse in my feet and hands sometimes...

Hi all had my 3 months appointment over week she ask how I was doing firstly sai...

Jody00

•2 years ago

8 Replies

Update on my unusual body!

Hi Folks, just an update on my unusual bowel layout. I had an endoscopy and I am now on tablets for gastritis, so at least other things have been ruled out,...

Hi Folks, just an update on my unusual bowel layout. I had an endoscopy and I a...

Aime

•2 years ago

18 Replies

Newly diagnosed Et Edinburgh

Hi is anyone from Edinburgh that has been diagnosed with Essential Thrombocythaemia Calr mutation?

Hi is anyone from Edinburgh that has been diagnosed with Essential Thrombocythae...

Green1988

•2 years ago

31 Replies

Just another update

I had my telephone consultation today and it was a haematologist pharmacist. She said all mutations are ok (which I knew of) but there is something called...

I had my telephone consultation today and it was a haematologist pharmacist. She...

Notdiagnosed

•2 years ago

25 Replies

Anagrelide

Hu. Was diagnosed with ET Calr about 4 years ago. Started on Hydroxicarbomide but due to side affects changed to Anagrelide another 2 years ago. The issue is...

Hu. Was diagnosed with ET Calr about 4 years ago. Started on Hydroxicarbomide bu...

Arty16

•2 years ago

4 Replies

Travel coolers

Hello everyone, I am planning to travel for 6 weeks and it will be the first time after I have been diagnosed with ET-jack2. I live in Australia and going to...

Hello everyone, I am planning to travel for 6 weeks and it will be the first tim...

Adamidis

•2 years ago

2 Replies

Questions about AEs on Interferons w.r.t. liver enzymes

I have seen erratic liver enzyme levels while attempting to transition from hydroxyurea to Pegasys. I'm not convinced that the Peg is the cause of the issue...

I have seen erratic liver enzyme levels while attempting to transition from hydr...

LongETinUS

•2 years ago

16 Replies

Thank you

Thank you aime for your kind advice on diet

Tyray123

•2 years ago

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Newly diagnosed

Hi everyone I was contacted by my oncologist on the 21/6 /2022 To confirm I have MPN, what a shock , got my first face to face appointment in Aug Can anyone...

Hi everyone I was contacted by my oncologist on the 21/6 /2022 To confirm I hav...

Tyray123

•2 years ago

17 Replies

Polycythemia vera and cataract surgery?

I've been told that I will need to have cataract surgery in the near future. Has anyone with PV had any problems with this procedure?

I've been told that I will need to have cataract surgery in the near future. Has...

sbs_patient

•2 years ago

6 Replies

Ruxolitnib and bad skin

Has anybody on Rux experienced a deterioration in their facial skin. 9 months in I am gradually acquiring spots and blemishes As in a cluster of spots between...

Has anybody on Rux experienced a deterioration in their facial skin. 9 months i...

JP1952

•2 years ago

7 Replies

5,th covid vaccination

Just to say I've had my 5th covid jab on Saturday (moderna). I was a bit apprehensive about possible side effects following some of the posts here, but all...

Just to say I've had my 5th covid jab on Saturday (moderna). I was a bit apprehe...

Scaredy_cat

•2 years ago

5 Replies

AE's on interferon

No drastic new info here, but interesting as we experience INF together. A report on MPN Hub has >3 level adverse effects on INF vs HU. A few of note,...

No drastic new info here, but interesting as we experience INF together. A r...

EPguy

•2 years ago

10 Replies

Jakafi

Hi all, I was diagnosed in jan 22. My platelets were over 1100. I was immediately put on hydroxyurea and phlebotomy’s every 2weeks. Levels started to improve...

Hi all, I was diagnosed in jan 22. My platelets were over 1100. I was immediate...

Mich1234567

•2 years ago

3 Replies

Update - anticlimax!

Hello friends, by now I should have been almost at the end of conditioning chemotherapy. However, after admission to hospital on 19th June I was told on the...

Hello friends, by now I should have been almost at the end of conditioning chemo...

Otterfield

•2 years ago

35 Replies

MPN Voice ‘virtual’ forum – Mon 11th July 2022, 4.30 – 6.15 pm (16:30 – 18:15) BST

This online forum will feature talks from: Claire Woodley, Advanced Nurse Practitioner, Guy’s & St Thomas’ Hospital (GSTT) and Lauren Urwin, Specialist...

This online forum will feature talks from: Claire Woodley, Advanced Nurse Practi...

Mazcd

Partner•2 years ago

2 Replies

Apologies to EPGuy

I just wrote asking for those on the forum who take Besremi, for their reactions/side effects to it. Before when I asked, you were so kind to give me all the...

I just wrote asking for those on the forum who take Besremi, for their reaction...

TheaterCrazy

•2 years ago

1 Reply

High ferritin post transplant

I had my now 6 monthly blood test the other day with a follow up call from a haematologist a few days later. My results were all ok except for my ferritin,...

I had my now 6 monthly blood test the other day with a follow up call from a hae...

Dodders

•2 years ago

11 Replies

Besremi side effects.

Hi, I’ve read everyone of your posts for the last year and a half, and I really don’t know how I would have managed without you all. Hunter told me to get a...

Hi, I’ve read everyone of your posts for the last year and a half, and I really ...

TheaterCrazy

•2 years ago

4 Replies

Summer cold?

I have been sick for a week. Mild fever, sore throat, cough, runny and stuffy nose. My best friend tested positive for Covid. I tested negative. We were...

I have been sick for a week. Mild fever, sore throat, cough, runny and stuffy no...

Barbiebreath

•2 years ago

11 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2022

Update - pending PV Dx - Received copy of records

Calr difference type 1 and 2?

PV: cold extremities

PV: abnormal sensation in feet

Kidney Tumour Update

Walking safely

Skin changes on hydroxycarbamide

PV Trial

Update 6.7

Triple Neg ET often has non-drivers

Haematolist appointment

Update on my unusual body!

Newly diagnosed Et Edinburgh

Just another update

Anagrelide

Travel coolers

Questions about AEs on Interferons w.r.t. liver enzymes

Thank you

Newly diagnosed

Polycythemia vera and cataract surgery?

Ruxolitnib and bad skin

5,th covid vaccination

AE's on interferon

Jakafi

Update - anticlimax!

MPN Voice ‘virtual’ forum – Mon 11th July 2022, 4.30 – 6.15 pm (16:30 – 18:15) BST

Apologies to EPGuy

High ferritin post transplant

Besremi side effects.

Summer cold?

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