Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for July 2024

Test day

Had the last of the tests that Guys requested today.So far the spleen ,liver ,and kidneys all normal size!! (I had been told they were enlarged in the original...

Had the last of the tests that Guys requested today.So far the spleen ,liver ,an...

Spanelmad

•5 months ago

24 Replies

Cardiac Cath this Friday

I last updated about my new dx of POTS. Since I seem to be a “difficult” case, my cardiologist wants to do a heart cath this Friday. I have not had any chest...

I last updated about my new dx of POTS. Since I seem to be a “difficult” case, m...

Wewo01

•5 months ago

22 Replies

Restarting Pegasus

As per earlier posts, I was happy to start Peggy on 45mcg per week. After 3 months I had to stop due to my neutrophils dropping below 1. After a 2 month break...

As per earlier posts, I was happy to start Peggy on 45mcg per week. After 3 mont...

DougyW

•5 months ago

5 Replies

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Besremi Price Increase

Reviewing my Cigna Medicare Part D summary I noticed a 2% price increase in Besremi. The total cost to my plan is now $16,970.69/2 doses. For others in the...

Reviewing my Cigna Medicare Part D summary I noticed a 2% price increase in Besr...

hunter5582

•5 months ago

18 Replies

Ulcers and Gastritis

I got diagnosed with ulcers and gastritis yesterday. Should I stop aspirin and or HU and ask for a change in meds?

I got diagnosed with ulcers and gastritis yesterday. Should I stop aspirin and ...

dladydi

•5 months ago

5 Replies

Brothers great news

My brother had bowel stage 4 cancer , stoma bag operation on the cards. , BUT after radiotherapy and chemo. He is Clear. What a relief. He can even go back to...

My brother had bowel stage 4 cancer , stoma bag operation on the cards. , BUT af...

mag123ben

•5 months ago

4 Replies

antiviral meds covid

I rang haematology and they referred me to covid response team . I had a phone call from them and a courier delivered antivirals within one hour . Excellent...

I rang haematology and they referred me to covid response team . I had a phone c...

HazeBlue

•5 months ago

6 Replies

Free kappa light chain

Can someone tell me what a free Kappa light chain of 29 means?

Barbiebreath

•5 months ago

9 Replies

Paxlovid

I've caught covid and the covid clinic recommend I take Pacific has anyone else had this and did you have any side effects

I've caught covid and the covid clinic recommend I take Pacific has anyone else ...

Chel1

•5 months ago

18 Replies

Summer COVID UK

Hiya, I have ET JAK2 and several of my friends have come down with COVID. I was wondering if anyone knew if we were eligible for free COVID tests in the UK...

Hiya, I have ET JAK2 and several of my friends have come down with COVID. I was ...

Cassandra61

•5 months ago

15 Replies

Momelotinib ~ tips or hints?

I Have Post Essential Thrombocythemia Cal-R Positive Myelofibrosis. I have been on Ruxolitinib since 2016, but have now become resistant. I am due to start...

I Have Post Essential Thrombocythemia Cal-R Positive Myelofibrosis. I have been ...

Sunshine_Lover

•5 months ago

14 Replies

THANK YOU TO ALL RE: Covid Anti Viral Meds.

Thank you for all your helpful replies. As I had telephone appointment already scheduled I spoke to Haematologist about getting Anti viral meds. Apparently...

Thank you for all your helpful replies. As I had telephone appointment already s...

azaelea

•5 months ago

2 Replies

Done being passive

From now on I am taking power of my health and ET. I'm done listening to my hemo. Her message is: take your meds, take your shots, progression is random,...

From now on I am taking power of my health and ET. I'm done listening to my hemo...

Hidden

•5 months ago

26 Replies

Medical Exemption Certificate

Hi, I was diagnosed with ET Jak 2 back in 2019 where I was given a form by the haematology nurses to fill out for the medical exemption, I never requested...

Hi, I was diagnosed with ET Jak 2 back in 2019 where I was given a form by the ...

Lynzyc

•5 months ago

32 Replies

Intolerant to IFN? Rux/IFN combo might help

Member monarch5000 posted this report in another thread. I figured it's worth a new post with more notes since the title message is worth a fresh look. I...

Member monarch5000 posted this report in another thread. I figured it's worth a...

EPguy

•5 months ago

11 Replies

Covid. Do we still have to receive Antiviral medication?

I have just tested positive with Covid after Husband started with symptoms. I went onto NHS website to report it but it informs that this is no longer...

I have just tested positive with Covid after Husband started with symptoms. I we...

azaelea

•5 months ago

20 Replies

Looking for research on link between ET/hydroxy and skin cancer

I know people on here have developed skin cancers, which we are warned about, since starting on ET treatments but the only research I’ve found was based on a...

I know people on here have developed skin cancers, which we are warned about, s...

Ipadlin

•5 months ago

4 Replies

Gout and hydroxycarbamide

I’ve suddenly come down with gout in my big toe, it’s come out of the blue for no apparent reason. Does anyone know if there’s a connection with hydroxy which...

I’ve suddenly come down with gout in my big toe, it’s come out of the blue for n...

Joetcalr

•5 months ago

13 Replies

MonoclonalGammopathyof Undetermined Significance Update

This week I went to a great Myeloma/ MGUS specialist at Moffitt. I was diagnosed with JAK 2 ET and MGUS mutation in 2023. The doctor I go to monthly, not ET...

This week I went to a great Myeloma/ MGUS specialist at Moffitt. I was diagnosed...

JAB6

•5 months ago

5 Replies

Where are you Hunter?

Kelly2

•5 months ago

12 Replies

5FU/CAL, any experience? (5 fluorouracil/calcipotriene)

Just wondering if anyone has had treatment for actinic keratosis on the nose or face? I just started treatment for multiple AK's on the nose with FU/CAL cream...

Just wondering if anyone has had treatment for actinic keratosis on the nose or ...

Meatloaf9

•5 months ago

8 Replies

Aspirin and Lansoprazole

Does everyone who is taking aspirin also take lansoprazole ? I wasn’t prescribed it but asked my GP a few years after I started aspirin and she did prescribe...

Does everyone who is taking aspirin also take lansoprazole ? I wasn’t prescribe...

jodary

•5 months ago

38 Replies

Blood Groups and MPN

Hi, anyone seen any research on different blood groups and propensity for / correlation with MPN? I have seen only one abstract of some Indian research from...

Hi, anyone seen any research on different blood groups and propensity for / corr...

Hidden

•5 months ago

6 Replies

VTarpey

Hi just wondering if anyone can advise me I'm on 90mg of interferon every 2 weeks since March this year my platelets are fluctuating between 850 and 1000...

Hi just wondering if anyone can advise me I'm on 90mg of interferon every 2 week...

VTAR24

•5 months ago

9 Replies

Increased Fibrosis. ET Progression ?

Hi All, I have read a lot of posts. This is my first time posting. I'm a 46yr/male and was diagnosed in May of 2023 with ET Jak2+ at age 45. I had ignored...

Hi All, I have read a lot of posts. This is my first time posting. I'm a 46yr/ma...

Scout422

•5 months ago

10 Replies

To share interesting experience!

Good morning my MPN family, Yesterday my husband tested positive for Covid, then I decided to take test too and was positive. After that I went to contact my...

Good morning my MPN family, Yesterday my husband tested positive for Covid, the...

light

•5 months ago

11 Replies

And breathe …..

On a blood test from my GP 3 weeks ago the results showed blasts, where previously I hadn’t had any. Obviously this caused me a great deal of worry. I had...

On a blood test from my GP 3 weeks ago the results showed blasts, where previous...

lizzziep

•5 months ago

8 Replies

Starting Rux Next Month

After five years of phlebotomy only with PV I started besremi two years ago at the minimum dose since I wanted to take a more early intervention approach....

After five years of phlebotomy only with PV I started besremi two years ago at ...

mfh7

•5 months ago

26 Replies

critical illness

hi my husband was diagnosed with pv last year 2023 we are trying to claim off our insurance to critical illness but I’m just afraid they will turn it down...

hi my husband was diagnosed with pv last year 2023 we are trying to claim off ou...

Jojo1006

•5 months ago

4 Replies

The dilemma of hypoalbuminemia

Hello everyone, I have a history of MPN for many years, I have noticed that my liver protein, total protein, albumin, and prealbumin levels are all...

Hello everyone, I have a history of MPN for many years, I have noticed that my l...

merlisa

•5 months ago

1 Reply

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2024

Test day

Cardiac Cath this Friday

Restarting Pegasus

Besremi Price Increase

Ulcers and Gastritis

Brothers great news

antiviral meds covid

Free kappa light chain

Paxlovid

Summer COVID UK

Momelotinib ~ tips or hints?

THANK YOU TO ALL RE: Covid Anti Viral Meds.

Done being passive

Medical Exemption Certificate

Intolerant to IFN? Rux/IFN combo might help

Covid. Do we still have to receive Antiviral medication?

Looking for research on link between ET/hydroxy and skin cancer

Gout and hydroxycarbamide

MonoclonalGammopathyof Undetermined Significance Update

Where are you Hunter?

5FU/CAL, any experience? (5 fluorouracil/calcipotriene)

Aspirin and Lansoprazole

Blood Groups and MPN

VTarpey

Increased Fibrosis. ET Progression ?

To share interesting experience!

And breathe …..

Starting Rux Next Month

critical illness

The dilemma of hypoalbuminemia

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