Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for March 2024

"Managing Myeloproliferative Neoplams" - book edited by Ruben Mesa and Claire Harrison

Would anyone like my copy of the above book? I will send it to you.

Searcher56

•2 months ago

20 Replies

A little bit scared!

Hello, I have just been diagnosed with Intermediate Myelofibrosis, feeling very anxious and scared about my outlook, on day 3 of Ruxolitinib so far I seem to...

Hello, I have just been diagnosed with Intermediate Myelofibrosis, feeling very...

Teddylover1

•2 months ago

35 Replies

Another antibody for CALR is in clinical trials

Hi All, I just heard about another antibody treatment for CALR MF and ET that is in clinical trials with Janssen (J&J). Incyte of course also has one in the...

Hi All, I just heard about another antibody treatment for CALR MF and ET that is...

CanadaG

•2 months ago

9 Replies

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Switch from Besremi to Ruxolitinib

Dear all After 18 months on Besremi my oncologist and I made the decision to move on and so am starting on Rux. In brief, I titrated up from 100 ug (Sep...

Dear all After 18 months on Besremi my oncologist and I made the decision to mo...

gjh8733

•2 months ago

37 Replies

Update 8.0 - Next chapter

As you may remember from previous posts, my HCT has been creeping steadily up. It looked initially like 175mcg Besremi was going to work, but the last two...

As you may remember from previous posts, my HCT has been creeping steadily up. ...

hunter5582

•2 months ago

49 Replies

Haemachromatosis?

Hello. Just had most recent set of blood results and appointment with Haematologist today. Everything seemed to be normal re platelets, neutrophils,...

Hello. Just had most recent set of blood results and appointment with Haematolog...

Shanders

•2 months ago

2 Replies

Peg and rash

Hi,I dx 2011 with Et jak2. Treated with 500mg HU and aspirin until experiencing Amouris fugax (TIA). So then clopidogrel. Fatigue has always been my worst...

Hi,I dx 2011 with Et jak2. Treated with 500mg HU and aspirin until experiencing ...

gbeam

•2 months ago

16 Replies

Grounding? And other natural remedies?

Curious about results from "grounding." Grounding refers to absorbing the natural electrons from the earth (ground.) By standing barefoot outside, or by...

Curious about results from "grounding." Grounding refers to absorbing the natur...

PMac314

•2 months ago

14 Replies

Thank you and latest blood results

Thank you for sharing your experiences with Ruxolitinib. I have now completed 4 weeks on Rux, 20 mg twice a day for PMF intermediate 2. My bloods, already...

Thank you for sharing your experiences with Ruxolitinib. I have now completed ...

artydutch

•2 months ago

6 Replies

Low saturation with PV and Jakavi 20

I have had PV since two years. Rux started december '23. Good results with HB and HCT. HB is pretty low now 7.7 for a while. My weight has increased 10% wit...

I have had PV since two years. Rux started december '23. Good results with HB an...

Quitojohn

•2 months ago

11 Replies

Don’t Go It Alone

Hi I’ve just had the experience of going to an important consultant appointment accompanied by an MPN buddy. Not an official, matched by Maz, buddy, but a...

Hi I’ve just had the experience of going to an important consultant appointme...

Rachelthepotter

•2 months ago

20 Replies

Recent visit with my MPN Dr

(See end for context of this plot) I've been on Rux since Apr '23. At my recent Dr visit I asked more about Rux. My Dr is experienced with it and has many...

(See end for context of this plot) I've been on Rux since Apr '23. At my rece...

EPguy

•2 months ago

38 Replies

Pegasys side effects

I was switched from 500 Hydroxyurea/day to 90mg Pegasys every two weeks. The pain in hips and thighs is substantial - headache also, but not as bothersome as...

I was switched from 500 Hydroxyurea/day to 90mg Pegasys every two weeks. The pa...

Dusty777

•2 months ago

17 Replies

PV Research study

There was a full page article in my local newspaper to be part of an Phase 3 investigational drug study for ppl with PV. The drug is called rusfertide - it...

There was a full page article in my local newspaper to be part of an Phase 3 inv...

ERei

•2 months ago

8 Replies

Hydrea

Am on HU and had a small lump come up on my face had it removed and just had letter from dermatologist to confirm it was basil cell carcinoma I now have to...

Am on HU and had a small lump come up on my face had it removed and just had le...

Chel1

•2 months ago

21 Replies

just a question

this might sound silly but I got diagnosed in 2022, with ET an jac2 am on pegsy injection wkly , I have started to get pain only slight in my left arm and a...

this might sound silly but I got diagnosed in 2022, with ET an jac2 am on pegsy ...

Staroftheday

•2 months ago

11 Replies

Pegasys Journey

ET/JAK2+. I started Pegasys 45mcg 14wks ago and my platelet count was stabilised at 10wks (age 66yrs). I was given the option of Hydroxy or Pegasys, for me...

ET/JAK2+. I started Pegasys 45mcg 14wks ago and my platelet count was stabilise...

Carol0925

•2 months ago

18 Replies

Interferon alpha

I got diagnosed with ET Jak2 positive back in November and 42 years old. I've had my latest blood results back and my platlets are just under 600. Having read...

I got diagnosed with ET Jak2 positive back in November and 42 years old. I've ha...

Carlalawoo

•2 months ago

22 Replies

Day 0 SCT

So today I got my stem cells, fresh from my brother who had them harvested this morning so as fresh as can be. I just know the most difficult times are still...

So today I got my stem cells, fresh from my brother who had them harvested this ...

Flyingsteamer

•2 months ago

40 Replies

Not whining!

I'm not whining and idk how others feel but getting this diagnosis was like...o cancer sucks but then again at least this version is not terminal...so I'm...

I'm not whining and idk how others feel but getting this diagnosis was like...o ...

FCancer123

•2 months ago

20 Replies

REPLIES TO MY POST RE ACCESS TO BLOOD TEST ON INE.

I am overwhelmed by all the extremely helpful replies to my query from my “ blood brothers and sisters” on MPN Voice. I am about to try PKB initially as I did...

I am overwhelmed by all the extremely helpful replies to my query from my “ bloo...

azaelea

•2 months ago

1 Reply

IVIG with CALR ET

Has anyone with ET/MPN ever received IVIG? I have ET and my platelets are in the mid to high 500k range on 1000mg HU daily. IVIG has a risk for blood clots...

Has anyone with ET/MPN ever received IVIG? I have ET and my platelets are in th...

George1976

•2 months ago

3 Replies

ET and Dizzyness

Hi All - I have been experiencing dizzy spells for at least as long as I have been diagnosed. Sometimes when I stand up. Sometimes I just don't feel quite...

Hi All - I have been experiencing dizzy spells for at least as long as I have be...

Fjdjdjdjd

•2 months ago

16 Replies

Newly Diagnosed with ET

Hi all, Im new to the forum. My Haematologist suggested I have a look. I’m 48 had a stroke out of the blue was not unwell or had any medical conditions to...

Hi all, Im new to the forum. My Haematologist suggested I have a look. I’m 48...

Sunbathing

•2 months ago

23 Replies

Recent blood results

Hello, I am Jak 2 PV recently on Peg 45mcg fortnightly. Feeling okay just itching at times but noticed some of my blood results are below the range: WWC 3.5 ,...

Hello, I am Jak 2 PV recently on Peg 45mcg fortnightly. Feeling okay just itchin...

kamiilos

•2 months ago

4 Replies

Ruxalinitib for MF2

I would love to hear anyone’s experience with Rux. How soon did you notice a difference? Which were the most obvious side effects? How low did they allow...

I would love to hear anyone’s experience with Rux. How soon did you notice a dif...

artydutch

•2 months ago

7 Replies

Access to Blood Test results on line.

Hi everyone, I am wondering if anyone in the UK can tell me if there is any other way I can see my blood test results on line other than GP’s app, “My GP”. and...

Hi everyone, I am wondering if anyone in the UK can tell me if there is any othe...

azaelea

•2 months ago

38 Replies

Hydroxycarmide

Quick question, how long does it take hydroxycarmide to leave the system?Thanks Jan

Quick question, how long does it take hydroxycarmide to leave the system?Thanks...

Charliemills

•2 months ago

5 Replies

Other PV People's average dose of Peginterferon Alpha-2a?

Hi All, A brief overview of me, I was diagnosed with JAK2 & PV in November after being hospitalized with a clot in my splenic vein. I'm now having treatment...

Hi All, A brief overview of me, I was diagnosed with JAK2 & PV in November afte...

PVKween

•2 months ago

14 Replies

Allele Test for PV by Blood?

I went to my Hematologist today and asked whether there was an allele blood test for PV and the response I received was no. I thought I had read on these...

I went to my Hematologist today and asked whether there was an allele blood test...

Luthorville

•2 months ago

9 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2024

"Managing Myeloproliferative Neoplams" - book edited by Ruben Mesa and Claire Harrison

A little bit scared!

Another antibody for CALR is in clinical trials

Switch from Besremi to Ruxolitinib

Update 8.0 - Next chapter

Haemachromatosis?

Peg and rash

Grounding? And other natural remedies?

Thank you and latest blood results

Low saturation with PV and Jakavi 20

Don’t Go It Alone

Recent visit with my MPN Dr

Pegasys side effects

PV Research study

Hydrea

just a question

Pegasys Journey

Interferon alpha

Day 0 SCT

Not whining!

REPLIES TO MY POST RE ACCESS TO BLOOD TEST ON INE.

IVIG with CALR ET

ET and Dizzyness

Newly Diagnosed with ET

Recent blood results

Ruxalinitib for MF2

Access to Blood Test results on line.

Hydroxycarmide

Other PV People's average dose of Peginterferon Alpha-2a?

Allele Test for PV by Blood?

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