Posts - MPN Voice | HealthUnlocked

MPN Voice

11,252 members•15,729 posts

All posts for January 2023

Questions regarding pegylated interferon

Sorry if this has already been asked, I have done a search on here, but there are so many posts to wade through; it became a little boggling! I've just had a...

Sorry if this has already been asked, I have done a search on here, but there ar...

LRH77

•2 years ago

30 Replies

Hydroxy v Interferon

Hello again, I wrote a post with same title 7 months ago and had a great and really helpful response and I want to thank you all. I had read and reread all...

Hello again, I wrote a post with same title 7 months ago and had a great and rea...

RazB

•2 years ago

8 Replies

Besremi One Year Update

Hi all, I've got my first Besremi injection on January 27, 2022. As I've shared before, currently no issues with the drug, but early on an uptick in...

Hi all, I've got my first Besremi injection on January 27, 2022. As I've sha...

Elizka

•2 years ago

14 Replies

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Meds or not meds.

I was diagnosed 2009 (or thereabouts) with JAK2 mutation discovered after BMB because of enlarged spleen. Platelets have been around 450-500 for all those...

I was diagnosed 2009 (or thereabouts) with JAK2 mutation discovered after BMB be...

Franju

•2 years ago

34 Replies

Why do we have mutations?

Why do we all have these bone marrow mutations? It cannot all be due to family DNA bad luck. My haemo told me that he is certain that my mutation is due to...

Why do we all have these bone marrow mutations? It cannot all be due to family D...

Andrew8

•2 years ago

18 Replies

Possible ET but triple negative

Ive been reading posts on this forum having been sent to haematologist as have high platelet levels. Consultant was quite sure a blood test would come back...

Ive been reading posts on this forum having been sent to haematologist as have h...

Scarlett500

•2 years ago

22 Replies

Anyone have experience of taking Imiquimod when taking hydroxycarbamide?

I don't post on here often but have now been diagnosed with VAIN2. I am currently being treated with hydroxycarbamide & low dose aspirin for JAK2 positive MPN...

I don't post on here often but have now been diagnosed with VAIN2. I am currentl...

Devilgirl

•2 years ago

2 Replies

Starting phlebotomies soon but not sure if this is the right approach?

Hi all, I'm 65 and was diagnosed last summer via bone marrow biopsy and genetic testing as having JAK2 positive ET. I started taking hydroxyurea 3 times a...

Hi all, I'm 65 and was diagnosed last summer via bone marrow biopsy and genetic ...

Maximo06

•2 years ago

5 Replies

Experience of withdrawal from inhibitor treatment?

Who has slowly withdrawn from inhibitor treatment after using inhibitor, such as Rux.

Who has slowly withdrawn from inhibitor treatment after using inhibitor, such as...

merlisa

•2 years ago

14 Replies

LDH Levels

I'm going on three weeks with Pegasys (90mcg once per week) and still taking two pills of Hydrea as well as an aspirin per day. My platelets continue to go...

I'm going on three weeks with Pegasys (90mcg once per week) and still taking two...

Zeppelin11

•2 years ago

3 Replies

Interferon and CMR according to ChatGPT

”Interferon is a type of protein that is produced by the body's immune system in response to viral infections. It has been used as a treatment for certain...

”Interferon is a type of protein that is produced by the body's immune system in...

Manouche

•2 years ago

1 Reply

BMB is Over

So I had the BMB yesterday and the procedure itself was not so bad. The medical facility I go to does many of these so the doctors and nurses are very...

So I had the BMB yesterday and the procedure itself was not so bad. The medical...

Mtnlife

•2 years ago

6 Replies

Besremi question

I plan to start Besremi next week when I am off the next day. Does anyone have a suggestion on when to take it? Like at night, with or without food or does...

I plan to start Besremi next week when I am off the next day. Does anyone have ...

KLCTJC

•2 years ago

8 Replies

Feeling numbed and pain on the hands often at nights , had black nails on my hands and toes

I am taking hydroxy since August last year to present, Monday , Wednesday Friday 3x Saturday ,Sunday ,Tuesday And Thursday 2x. I have my black nails on hands...

I am taking hydroxy since August last year to present, Monday , Wednesday Frida...

kid12kg

•2 years ago

9 Replies

Bone Marrow Transplant

A wonderful uplifting post to read first thing in the morning. You've made my day!

A wonderful uplifting post to read first thing in the morning. You've made my da...

Sivasi

•2 years ago

2 Replies

BONE MARROW TRANSPLANT

Good evening to you , I hope you are all well. I would like to share my special news with you all , today I completed day 2 of my conditioning ahead of my BMT...

Good evening to you , I hope you are all well. I would like to share my special...

kevinbros

•2 years ago

62 Replies

JAK2 allele burden

Got my latest lab results. Allele burden is now 1,6%, was 1,0% three years ago. Slightly relieved, although I am afraid the growth is probably closer to...

Got my latest lab results. Allele burden is now 1,6%, was 1,0% three years ago. ...

Bigcheat

•2 years ago

18 Replies

Understanding BMB

Hi, Reading other members' interpretations of their BMB reports has led me to look at mine more closely, and would value your input. I had my second one over a...

Hi, Reading other members' interpretations of their BMB reports has led me to lo...

JP1952

•2 years ago

1 Reply

Kia Ora Koutou!

Kia Ora MPN whanau 😊it’s taken me a little while to write this post but I’d first like to introduce myself - hi 👋🏼 my name is Kylee and I am a 39 yr old New...

Kia Ora MPN whanau 😊it’s taken me a little while to write this post but I’d fir...

KyleeR

•2 years ago

9 Replies

MD Anderson visit

Today went well. I had all of my articles which Dr V looked at and did his own research too. He agreed with me! I am getting to start Beremi! I am so...

Today went well. I had all of my articles which Dr V looked at and did his own ...

KLCTJC

•2 years ago

13 Replies

Urgent! Help deciding on Pegasys dose today

Hi gang, I have an appointment with my Haem in a couple of hours to prescribe pegasys and I’m trying to decide what the best starting dose will be. Would...

Hi gang, I have an appointment with my Haem in a couple of hours to prescribe p...

IrishSarah

•2 years ago

18 Replies

BMB in Two Days

I have my bmb scheduled for two days from now. My anxiety is "through the roof". I believe my hematologist originally thought I have ET. I am Calr 1 positive....

I have my bmb scheduled for two days from now. My anxiety is "through the roof"....

Mtnlife

•2 years ago

37 Replies

BMB results

Just had a call from specialist nurse to say bmb results were in and they showed more fibrosis than the last one 6 months ago, but not full blown...

Just had a call from specialist nurse to say bmb results were in and they showed...

lizzziep

•2 years ago

7 Replies

Just diagnosed with ET

Hi Some final tests must still be done on my blood but it seems my diagnosis is ET. 48 years old male. It was a shock I must say cause I was healthy all my...

Hi Some final tests must still be done on my blood but it seems my diagnosis is...

Myers75

•2 years ago

25 Replies

Not so good news - after 11 months of Besremi, WBC, RBC, Hemoglobin, and HCT were all below normal

For the last 11 months, WBC, RBC, Hemoglobin, and HCT were all trending lower; and in general CBC and CMP numbers have been normal for the last 9 months until...

For the last 11 months, WBC, RBC, Hemoglobin, and HCT were all trending lower; a...

Pat032018

•2 years ago

16 Replies

AFIB, Besremi refused by insurance, and more

On December 1, I felt breathless, climbing stairs quickly and caring for my husband (who had open heart surgery in November). I felt like my heart was...

On December 1, I felt breathless, climbing stairs quickly and caring for my hu...

Elizka

•2 years ago

7 Replies

up coming appointment

Looking for some good vibes before my appointment on Thursday at MD Anderson. I notified them on the articles I have supporting INF alpha being used in MS...

Looking for some good vibes before my appointment on Thursday at MD Anderson. I...

KLCTJC

•2 years ago

12 Replies

Update 7.3 Good news this time

My HCT had been creeping up over time as my iron levels improved. 12/19 HCT=47.9% and HGB=15.5. Since it was now consistently above target for PV, time to do...

My HCT had been creeping up over time as my iron levels improved. 12/19 HCT=47....

hunter5582

•2 years ago

54 Replies

Handy resource for MPNs

https://www.lls.org/sites/default/files/2021-10/PS81_MPN_Booklet_2021.pdf This is a recent - all you wanted to know abt diagnosis and treatment of MPNs-...

https://www.lls.org/sites/default/files/2021-10/PS81_MPN_Booklet_2021.pdf This ...

Rachelthepotter

•2 years ago

10 Replies

Ruxolitinib/Pegylated Interferon Alpha 2a Reduces Spleen Length in Myelofibrosis

« Such deep molecular responses, to our knowledge, have never been seen in patients with myelofibrosis before,” Kiladjian noted » »A previously developed...

« Such deep molecular responses, to our knowledge, have never been seen in pati...

Manouche

•2 years ago

1 Reply

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2023

Questions regarding pegylated interferon

Hydroxy v Interferon

Besremi One Year Update

Meds or not meds.

Why do we have mutations?

Possible ET but triple negative

Anyone have experience of taking Imiquimod when taking hydroxycarbamide?

Starting phlebotomies soon but not sure if this is the right approach?

Experience of withdrawal from inhibitor treatment?

LDH Levels

Interferon and CMR according to ChatGPT

BMB is Over

Besremi question

Feeling numbed and pain on the hands often at nights , had black nails on my hands and toes

Bone Marrow Transplant

BONE MARROW TRANSPLANT

JAK2 allele burden

Understanding BMB

Kia Ora Koutou!

MD Anderson visit

Urgent! Help deciding on Pegasys dose today

BMB in Two Days

BMB results

Just diagnosed with ET

Not so good news - after 11 months of Besremi, WBC, RBC, Hemoglobin, and HCT were all below normal

AFIB, Besremi refused by insurance, and more

up coming appointment

Update 7.3 Good news this time

Handy resource for MPNs

Ruxolitinib/Pegylated Interferon Alpha 2a Reduces Spleen Length in Myelofibrosis

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