Posts - MPN Voice | HealthUnlocked

MPN Voice

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All posts for March 2024

Neurofibroma under skin question

Hello! Has anyone experienced under skin neurofibroma? Trying to figure out whether to have it removed or not. One on the back. No pain, but wondering if it...

Hello! Has anyone experienced under skin neurofibroma? Trying to figure out whe...

Huskyy

•9 months ago

7 Replies

PV Iron deficiency and Endurance

I am 65, diagnosed with PV November 2023 (had pulmonary embolus). I am on Hydrea and all blood counts are now normal. My usual activity has included a lot...

I am 65, diagnosed with PV November 2023 (had pulmonary embolus). I am on Hydre...

FourSeasonLover

•9 months ago

4 Replies

Confused.com

Can some please tell me I have been diagnosed with ET, what does it mean when they say that I have Jak2 and CALR ?

Can some please tell me I have been diagnosed with ET, what does it mean when th...

twirl63

•9 months ago

13 Replies

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small lump/bruise on neck

Hi I don’t post much but I read daily. I was diagnosed with ET JAK2 almost two years ago. I take six Hydroxycarbamide capsules weekly, and an aspirin. I...

Hi I don’t post much but I read daily. I was diagnosed with ET JAK2 almost two ...

Hannah2308

•9 months ago

14 Replies

In layman's terms

Please could somebody explain the difference between Carl positive & Carl negative and what does the Carl mutation represent.I attach a picture from my......

Please could somebody explain the difference between Carl positive & Carl negati...

Lynne-G

•9 months ago

2 Replies

Stress and E T

Happy Easter to you all! Can stress make symptoms of E T worse? I had a few stressful moments this week and I’ve been feeling extremely tired, more than...

Happy Easter to you all! Can stress make symptoms of E T worse? I had a few st...

Cokopops

•9 months ago

2 Replies

Just started Angrelide at 2mg/day

Hi friends Anyone with experience with Angrelide, how quickly did you see PLT count decrease? Did you observe PLT decline in a matter of days, or weeks, or...

Hi friends Anyone with experience with Angrelide, how quickly did you see PLT...

easy2211

•9 months ago

3 Replies

My Platelets go down during the warmer months...

Hello everyone, I am new here--diagnosed in 2018 with JAK2+ ET, platelets currently in the low 600's. Here is my question: every year since I was diagnosed my...

Hello everyone, I am new here--diagnosed in 2018 with JAK2+ ET, platelets curren...

Plateletsgonewild

•9 months ago

7 Replies

Please tell me why……

my doc wanted a BMB to confirm PV. Right afterwards I read there’s a blood test to confirm Jak2. So why would a dr. Advocate for the biopsy over the blood...

my doc wanted a BMB to confirm PV. Right afterwards I read there’s a blood test ...

Wendrew

•9 months ago

17 Replies

needing advice

I haven’t been well for about three years now, and have suffered from fatigue since my early thirties. Just lately I have noticed that my feet keep turning...

I haven’t been well for about three years now, and have suffered from fatigue si...

Plath1982

•9 months ago

11 Replies

Update 8.1 - post venesection

I followed up on my planned venesection on March 26. I had a CBC done today. the results look good. HCT=42.1%, down from 47.3%. The next planned CBC is...

I followed up on my planned venesection on March 26. I had a CBC done today. t...

hunter5582

•9 months ago

22 Replies

Something for everyone - MF-PV-ET

From our friends at MPN Advocacy and Education International - Recordings from recent Conversations with MPN Specialists MF...

From our friends at MPN Advocacy and Education International - Recordings from ...

hunter5582

•9 months ago

13 Replies

New Drug may be relevant to MF, ET

A new drug for pulmonary hypertension, (PAH) Sotatercept, has just been approved. PAH is not a typical MPN worry, but it has side effects that may be relevant...

A new drug for pulmonary hypertension, (PAH) Sotatercept, has just been approved...

EPguy

•9 months ago

11 Replies

Critical Illness - ET

Hello My husband has been diagnosed with ET, and I am wondering if anyone knows if this can be claim on your Critical illness insurance, I do not want to...

Hello My husband has been diagnosed with ET, and I am wondering if anyone kn...

Chez311

•9 months ago

5 Replies

Fibromyalgia similar symptoms.

I have fibromyalgia for years, and was born with scoliosis. I found a lot of the symptoms I have were put down to fybro. So nothing more was done. I had...

I have fibromyalgia for years, and was born with scoliosis. I found a lot of the...

mag123ben

•9 months ago

3 Replies

Massive nose bleed.

On Tuesday morning at 1 am my nose started bleeding, one nostril, constant stream, at 3 am it hadn’t stopped so called nhs 111, they advised going to...

On Tuesday morning at 1 am my nose started bleeding, one nostril, constant stre...

lizzziep

•9 months ago

25 Replies

Updated Numbers Based on Recent Appointment

Hi, I'm about 10 months in to starting Besremi and just had a phlebotomy. RBC had gotten to 47 after only 2 months from my prior phlebotomy, which I wasn't...

Hi, I'm about 10 months in to starting Besremi and just had a phlebotomy. RBC h...

Luthorville

•9 months ago

26 Replies

Pegasys & Hydrea

I am wondering if anyone is taking both in combination? I am not getting the results from PEG and I don't want to increase my dose above 115 mcgs. I asked my...

I am wondering if anyone is taking both in combination? I am not getting the res...

russkatt

•9 months ago

7 Replies

Pain in heels.. Interferon related or not?

Hi, just wondering if anyone has had painful heels especially when walking while being on Interferon? I’ve been on interferon for around 9 months and every so...

Hi, just wondering if anyone has had painful heels especially when walking while...

beckyluck

•9 months ago

17 Replies

stem cell for et?

Would stem cell transplant be an option for ET? I cannot take the Hydrea or Anagralide. Thanks for your feed back

Would stem cell transplant be an option for ET? I cannot take the Hydrea or Ana...

Preacherswife

•9 months ago

6 Replies

Actinic Keratosis

Good morning from the US of A, Yesterday I received notification from a scalp biopsy I had done last week that the sore on the top of my head is Actinic...

Good morning from the US of A, Yesterday I received notification from a scalp b...

mbr8076

•9 months ago

13 Replies

Wanted to send some positive vibes

just wanted to wish everyone a good week. Happy Easter, Happy Spring. On my journey to try and be positive (which is so hard for me). Just thought I would...

just wanted to wish everyone a good week. Happy Easter, Happy Spring. On my jo...

KLCTJC

•9 months ago

19 Replies

Migraines

Hi, I was diagnosed at 41 back in 2019 with ET Jak 2 and my levels have always been fairly normal at 580. Before I was diagnosed I started with migraines,...

Hi, I was diagnosed at 41 back in 2019 with ET Jak 2 and my levels have always ...

Lynzyc

•9 months ago

8 Replies

ET and arthritis

Hi all, I hope everyone is doing well as they can be… I was wondering if anyone is suffering with the above? I have read that it seems to be connected due...

Hi all, I hope everyone is doing well as they can be… I was wondering if anyon...

Grendall

•9 months ago

27 Replies

Advice please on headaches and fatigue please

I am a relatively fit and healthy 57 year old, no health complications so when I was diagnosed with ET last year I was put on aspirin and ferrous sulphate for...

I am a relatively fit and healthy 57 year old, no health complications so when I...

Yarnhabit

•9 months ago

22 Replies

Gallstones and MPN’s

Hi guys, does anyone know if gallstones are more common or significant in anyway when you have and mpn? I’ve heard they are rare before 40 but I’ve had one...

Hi guys, does anyone know if gallstones are more common or significant in anyway...

DarcyShepp

•9 months ago

5 Replies

ET, hydrea and feeling fatigued and depressed

Hi all, I haven't been on here for a while. I was diagnosed with ET 3 years ago. Ever since my diagnosis I have been monitored by a haemotologist in Brisbane...

Hi all, I haven't been on here for a while. I was diagnosed with ET 3 years ago....

Deya08

•9 months ago

20 Replies

AXSL1 gene mutation

Hello Everyone, I have pmf-MF with JAK2 mutation and have been taking Rux since the end of 2018. Currently, Rux is took in combination with interferon. From...

Hello Everyone, I have pmf-MF with JAK2 mutation and have been taking Rux since...

merlisa

•9 months ago

21 Replies

SCT journey update No.2

Hi all, following on from my last post, have just heard from my clinical nurse that they have found three very good donor matches on the registers!! Have been...

Hi all, following on from my last post, have just heard from my clinical nurse t...

LFCLove

•10 months ago

12 Replies

Princess of Wales

Many of you will have seen the Princess of Wales is having preventative chemotherapy for cancer. It must have been very difficult for her to speak about when...

Many of you will have seen the Princess of Wales is having preventative chemothe...

lizzziep

•10 months ago

37 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2024

Neurofibroma under skin question

PV Iron deficiency and Endurance

Confused.com

small lump/bruise on neck

In layman's terms

Stress and E T

Just started Angrelide at 2mg/day

My Platelets go down during the warmer months...

Please tell me why……

needing advice

Update 8.1 - post venesection

Something for everyone - MF-PV-ET

New Drug may be relevant to MF, ET

Critical Illness - ET

Fibromyalgia similar symptoms.

Massive nose bleed.

Updated Numbers Based on Recent Appointment

Pegasys & Hydrea

Pain in heels.. Interferon related or not?

stem cell for et?

Actinic Keratosis

Wanted to send some positive vibes

Migraines

ET and arthritis

Advice please on headaches and fatigue please

Gallstones and MPN’s

ET, hydrea and feeling fatigued and depressed

AXSL1 gene mutation

SCT journey update No.2

Princess of Wales

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