Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for March 2022

Is weight reduction possible whilst taking hydroxycarbamide for ET?

Even though this is a vanity question, but for those of us who stress out over gaining weight on this drug, I do hope there is a solution to my problem. I'm...

Even though this is a vanity question, but for those of us who stress out over g...

Hidden

•2 years ago

7 Replies

Bracelet

This may be of use to some of our MP N family I got this off Amazon £15 ready engraved inside is meds list you take in case of accident it's all there and is...

This may be of use to some of our MP N family I got this off Amazon £15 ready en...

ChillyAsh34

•2 years ago

7 Replies

Is Bone Marrow Biopsy painful?

Hey guys. So I am here again and I am quite nervous about my needed bone marrow biopsy test. My Hematologist come up with this decision since we already tested...

Hey guys. So I am here again and I am quite nervous about my needed bone marrow ...

Anonymous022719-

•2 years ago

49 Replies

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Et + Cutaneous Mastocytosis

Blessed Day to everyone! Does anyone here having ET and cutaneous Mastocytosis or systemic Mastocytosis? Can I know what symptoms currently you facing ? Did...

Blessed Day to everyone! Does anyone here having ET and cutaneous Mastocytosis ...

Ryna-Ally

•2 years ago

10 Replies

Is ET a Cancer

Good Day! To all .. My name is Ryna, from Singapore . I need some information with regards to Essential Thrombocytosis. 1/3/2022 : I was diagnosed with ET...

Good Day! To all .. My name is Ryna, from Singapore . I need some information w...

Ryna-Ally

•2 years ago

37 Replies

Hemp oil and Hemp gummies sweets

Hi, I know there have been a few posts regarding the use of hemp oil and products containing it. My hubby has purchased some oil and sweets and I’m hesitant...

Hi, I know there have been a few posts regarding the use of hemp oil and product...

Aime

•2 years ago

7 Replies

Recreational drugs

Does anyone use cannabis or other recreational drugs, who has PV and takes rivaroxyban and Pegasys interferon? I am curious, but think no point asking my...

Does anyone use cannabis or other recreational drugs, who has PV and takes rivar...

Dream23

•2 years ago

13 Replies

Besremi -Six Week Update

I had another CMP and CBC yesterday. Background: I got my first Besremi shot on January 28. I asked to start at 50 mcg. Second shot was 60 mcg and third was...

I had another CMP and CBC yesterday. Background: I got my first Besremi shot on ...

Elizka

•2 years ago

12 Replies

PV, Covid, Ruxolitinib and Sotrovimab

Hello everyone. After two years of careful precautions I finally got Covid ten days ago. Needless to say I was pretty worried and knew I needed to get one of...

Hello everyone. After two years of careful precautions I finally got Covid ten d...

Rob58

•2 years ago

16 Replies

Update on bruise

I’m pleased to report the bruise on finger has nearly gone in a week from start . No more popping up !!! For those who didn’t see post last week I posted a...

I’m pleased to report the bruise on finger has nearly gone in a week from start ...

Mostew

•2 years ago

2 Replies

Interferon Travel Temps, Freezing Risk?

There have been discussions here of travel with INF. I recently used the ice pack that comes with Besremi in a lunch cooler for my Dr office visit. After that...

There have been discussions here of travel with INF. I recently used the ice pac...

EPguy

•2 years ago

7 Replies

Bone pain and chills

Hello, all. I’m post Et Mf for the last 3 years. I was taking Fedratinib and hydroxyurea for a while but my doctor took me off of the Fedratinib in October....

Hello, all. I’m post Et Mf for the last 3 years. I was taking Fedratinib and hyd...

Cja1956

•2 years ago

14 Replies

Peg-Interferon therapy, contraindications

I have read several posts about the positive experience from peg-ifn therapy (whether Pegasys or, more recently, Besremi) , as more of us MPN'ers are...

I have read several posts about the positive experience from peg-ifn therapy (wh...

Aldebaran25

•2 years ago

8 Replies

2nd Besremi shot

I did it couple days ago. It remains at 50mcg as I am transitioning off HU. I did at home so no experts were watching. I had none of the mild flu like...

I did it couple days ago. It remains at 50mcg as I am transitioning off HU. I ...

EPguy

•2 years ago

12 Replies

Peg injections - two in one day

Hi all, I’m on peginterferon Alfa-2a for ET and a few weeks ago my dose was increased to 180mg. The hospital pharmacy deliver my medication and I can only...

Hi all, I’m on peginterferon Alfa-2a for ET and a few weeks ago my dose was incr...

FashionLover

•2 years ago

13 Replies

Update 6.3 - Good News

Besremi dose 3 was on March 2. Still at 100mcg, which seems to be the right dose. On March 1, HCT was back down to 42.3%. PLT stable at 406. LYMPH sill...

Besremi dose 3 was on March 2. Still at 100mcg, which seems to be the right dos...

hunter5582

•2 years ago

54 Replies

Aquagenic pruritus/Polycythemia

Hello, I have recently started having severe itching (like prickling/burning) after showering. Initially I thought there was something in the water but after...

Hello, I have recently started having severe itching (like prickling/burning) af...

Gotroot

•2 years ago

22 Replies

Good News re Shingrix vaccine

Well thought I would let you know GP called to say that they have ordered the vaccine and should be in tomorrow and booked me in for my first jab on the 9th...

Well thought I would let you know GP called to say that they have ordered the v...

Superwoman

•2 years ago

5 Replies

Phlebotomies keeping HCT at great level!

Hi My Friends! I have been having phlebotomies every few weeks. It varies depending on my HCT level. I am taking a very low dose of HU; 500mg 4 time a week. I...

Hi My Friends! I have been having phlebotomies every few weeks. It varies depend...

Wewo01

•2 years ago

6 Replies

Starting soon!

I had a telephone consultation with my SCT consultant today to talk about my preliminary debulking chemotherapy. I will probably be admitted in about three...

I had a telephone consultation with my SCT consultant today to talk about my pre...

Otterfield

•2 years ago

35 Replies

Top 10 Facts that Patients with Myeloproliferative Neoplasms Need to Know About Pacritinib (Vonjo)

Presentation by Dr. ruben mesa for those with MF interested in the recently FDA approved pacritinib. https://www.youtube.com/watch?v=BkA88WKMGcU

Presentation by Dr. ruben mesa for those with MF interested in the recently FDA ...

hunter5582

•2 years ago

4 Replies

I am hoping this can help someone

Hi, I was recently diagnosed with ET and started taking Hydrea on December 1st 2021. I was already having fatigue which I feel got worse after I starting...

Hi, I was recently diagnosed with ET and started taking Hydrea on December 1st 2...

lindabomba

•2 years ago

20 Replies

Letter for fourth covid jab

Morning all, Just a small query, dose anyone have a copy of the Blood cancer UK letter that was sent to us regarding immune compromised people with blood...

Morning all, Just a small query, dose anyone have a copy of the Blood cancer UK ...

Superwoman

•2 years ago

16 Replies

MPN Progression Webinar

Hunter very helpfully posted the recording of this webinar https://healthunlocked.com/mpnvoice/posts/147644509/mpn-progression-webinar-recording Much is...

Hunter very helpfully posted the recording of this webinar https://healthunlocke...

EPguy

•2 years ago

5 Replies

Thriving with a MPN Webinar

A Webinar of interest from our friends at Patient Empowerment Network. Wednesday March 2 at 1:00pm EDT...

A Webinar of interest from our friends at Patient Empowerment Network. Wednesd...

hunter5582

•2 years ago

1 Reply

New Here - recent diagnoses FOLLOWUP POST

Following up here after some great advise and kind words to calm my fears after recent test result showed that I was Jak 2 positive. As expected, I was...

Following up here after some great advise and kind words to calm my fears after ...

Jaffar21342

•2 years ago

4 Replies

First course of Meds

I have just completed my first round of blood tests (fortnightly) and my first consultation since my diagnosis, thankfully the platelet count seems to be...

I have just completed my first round of blood tests (fortnightly) and my first c...

Yoganana1

•2 years ago

18 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2022

Is weight reduction possible whilst taking hydroxycarbamide for ET?

Bracelet

Is Bone Marrow Biopsy painful?

Et + Cutaneous Mastocytosis

Is ET a Cancer

Hemp oil and Hemp gummies sweets

Recreational drugs

Besremi -Six Week Update

PV, Covid, Ruxolitinib and Sotrovimab

Update on bruise

Interferon Travel Temps, Freezing Risk?

Bone pain and chills

Peg-Interferon therapy, contraindications

2nd Besremi shot

Peg injections - two in one day

Update 6.3 - Good News

Aquagenic pruritus/Polycythemia

Good News re Shingrix vaccine

Phlebotomies keeping HCT at great level!

Starting soon!

Top 10 Facts that Patients with Myeloproliferative Neoplasms Need to Know About Pacritinib (Vonjo)

I am hoping this can help someone

Letter for fourth covid jab

MPN Progression Webinar

Thriving with a MPN Webinar

New Here - recent diagnoses FOLLOWUP POST

First course of Meds

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