Posts - MPN Voice | HealthUnlocked

MPN Voice

10,438 members • 14,387 posts

All posts for July 2023

Memorial Sloan Kettering (MSK) Patient Portal

Hi. Feeling out of sorts today because I cannot get into my Memorial Sloan Kettering (MSK) portal to see some new test results that were published (I was...

Hi. Feeling out of sorts today because I cannot get into my Memorial Sloan Kette...

LIGEBA

•9 months ago

2 Replies

could emails be answered by AI ?

I was up last night with someone who was unwell. Sent an email to Professor Harrison at Guys St Thomas Hospital,not expecting response till next week . At...

I was up last night with someone who was unwell. Sent an email to Professor Ha...

Mostew

•9 months ago

27 Replies

long term venesection

Has any one on long term venesections ever had a hemo lower your ferritin so low that venesections had to be halted.If this happened what was the solution...

Has any one on long term venesections ever had a hemo lower your ferritin so...

Scotch-Irish

•9 months ago

41 Replies

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SCT Indicators

I have had my follow up visit with the transplant team and they have found 6 x 100% matches in their 30s. So this is good and also humbling to think that...

I have had my follow up visit with the transplant team and they have found 6 x 1...

UKZA

•9 months ago

20 Replies

dose change

hi hope everyone is well I have a question about dose change in peggaus dr increase me to 67 instead of 45 has anyone felt a difference like more pain

hi hope everyone is well I have a question about dose change in peggaus dr incre...

Nc3500

•9 months ago

11 Replies

Exciting News from the MPN Research Foundation for us Jak2'ers

https://www.mpnresearchfoundation.org/news/targeting-the-jak2v617f-hematopoietic-stem-cell-through-integrins-based-combination/?utm_source=Constant+Contact&utm_

https://www.mpnresearchfoundation.org/news/targeting-the-jak2v617f-hematopoietic...

Hello94

•9 months ago

8 Replies

Swollen stomach

Hi I am Amanda from RotherhamI am 47 years old and have pv and am jack2 positive and also my white platelets are raised. I have only been to see a hematology...

Hi I am Amanda from RotherhamI am 47 years old and have pv and am jack2 positive...

Mandz12

•9 months ago

36 Replies

High Platelet Diagnosis Update….

I just thought I’d give an update after my latest phone call today with my Haematologist incase my info is helpful to anyone else going through similar…. A...

I just thought I’d give an update after my latest phone call today with my Haema...

Purdy13

•9 months ago

9 Replies

vertigo

hello we Are on holiday just now in Florida. Today my husband experienced vertigo it started off when he was sitting in the back of the car(he does feel sicky...

hello we Are on holiday just now in Florida. Today my husband experienced verti...

Green1988

•9 months ago

14 Replies

start of my SCT journey

Hi pawb I’m primary MF and Cal-r positive. I’ve been on Epo injections for 30 weeks which has kept my red cells in the high 90s. My platelets are in the low...

Hi pawb I’m primary MF and Cal-r positive. I’ve been on Epo injections for 30 w...

Grizly

•9 months ago

22 Replies

Insurance?

I know it’s a tricky subject, wondering if people in UK have any health/travel insurance tips or companies that they use? As always, thank you 🙏

I know it’s a tricky subject, wondering if people in UK have any health/travel i...

RazB

•9 months ago

7 Replies

Jak2 test it's been 11 days and no results yet.. I'm stressed the hell out...

So my red blood cells elevated 5.64, hemoglobin 16.0 and my hemocrit 49.6.Epo was normal my blood smear only says final Diagnosis polycythemia which I assume...

So my red blood cells elevated 5.64, hemoglobin 16.0 and my hemocrit 49.6.Epo wa...

Devilwoman72

•9 months ago

3 Replies

Good news on mutant allele reduction on Jakafi.

Hopetohelp's post about mutant allele % prompted me to share some good news. I was diagnosed with PV and JAK2 V617F in July 2021 after a heart attack caused by...

Hopetohelp's post about mutant allele % prompted me to share some good news. I w...

Sewingtime

•9 months ago

18 Replies

Stem Cell Transplant update

I am now close to 6 months from my sct. I feel well in myself except for side affects from steroids which I should be off in a week. They make it difficult...

I am now close to 6 months from my sct. I feel well in myself except for side a...

Scaredy_cat

•9 months ago

11 Replies

MPN expert?

I’ve decided to take the bull by the horns and contact an MPN expert to see their opinion on my case, the obvious one is Prof Harrison. Can anyone tell me if I...

I’ve decided to take the bull by the horns and contact an MPN expert to see thei...

lizzziep

•9 months ago

10 Replies

MRI and injuries

I'm Dx with PV jak2 and have been on low dose aspirin 2x daily/phlebotomies every 3 months or so for the last 20 years. My question has to do with inflammation...

I'm Dx with PV jak2 and have been on low dose aspirin 2x daily/phlebotomies ever...

ritaandscooter1

•9 months ago

7 Replies

Reducing Besremi dosing

Hi Community, I shared prior that I upped my Besremi dose from 150 to 180 the past two months. All was going well with several benefits which hadn't...

Hi Community, I shared prior that I upped my Besremi dose from 150 to 180 the ...

Elizka

•9 months ago

11 Replies

Dry mouth

Hi, I'm on Besremi, now at 150 every two weeks (down from 180 as WBC got too low). I have had dry eyes for awhile, but suddenly I'm noticing my mouth is...

Hi, I'm on Besremi, now at 150 every two weeks (down from 180 as WBC got too l...

Elizka

•9 months ago

14 Replies

High Risk?

I’ve seen the consultant today, all the NSG results are now back. He said they showed I was definitely transforming to MF, also that some markers showed I was...

I’ve seen the consultant today, all the NSG results are now back. He said they s...

lizzziep

•9 months ago

23 Replies

A little lost

Hi all, A few months ago my haematologist adding at the end of a letter to my GP that I am “likely to represent a mild early myeloproliferative disorder.”...

Hi all, A few months ago my haematologist adding at the end of a letter to my G...

inlimbo123

•9 months ago

8 Replies

Weight issues anyone?

Since starting hydroxycarbamide (Jan 2021) and like many others, I've gained weight. (My specialist considers this is better than losing weight on this drug)....

Since starting hydroxycarbamide (Jan 2021) and like many others, I've gained wei...

Hidden

•9 months ago

27 Replies

BMB conflicts blood test result on JAK2

My 22 yo old had a DVST which started us down the path of determining why he got the clot and if there are any underlying conditions. Initially in hospital...

My 22 yo old had a DVST which started us down the path of determining why he got...

Bindi77

•9 months ago

18 Replies

Mylo Fibrosis, et al

Hello. I'm new to this community and frankly new to social networking on health. My abbreviated story is that I transitioned to Mylo Fibrosis (MF) a few years...

Hello. I'm new to this community and frankly new to social networking on health....

luvinretirement

•9 months ago

12 Replies

pegasys and migraines

I see from a recent post response that there are others on Pegasys who have suffered from migraines. I have been on 45 mcg weekly for a few months and have...

I see from a recent post response that there are others on Pegasys who have suff...

Smithjoa

•9 months ago

9 Replies

Confused about diagnosis

I was diagnosed with JAK2+ MPN in August 22 as a result of abnormal routine blood tests. I am a female aged 75. I am attending a haematologist in his rooms in...

I was diagnosed with JAK2+ MPN in August 22 as a result of abnormal routine bloo...

Blackroc

•9 months ago

26 Replies

Jak2/tet2 mutation

Hello this is Ben from VA! I was diagnosed with MPN last year and use Besremi every 2 weeks. I have jak2/tet2 mutations which makes me feel confused and...

Hello this is Ben from VA! I was diagnosed with MPN last year and use Besremi ev...

Ben2022

•9 months ago

5 Replies

castor, oil patch

hi was wondering if anyone has ever done this it keeps popping up on my phone that it reduces inflammation and detox his liver. I’m not sure if we can do this...

hi was wondering if anyone has ever done this it keeps popping up on my phone th...

Nc3500

•9 months ago

2 Replies

Anagralide

I’ve just bee diagnosed with ET and about to start Anagralide. Does anyone have any advice or information from when they started taking it?

I’ve just bee diagnosed with ET and about to start Anagralide. Does anyone have...

GrannyG1

•9 months ago

9 Replies

Does hair loss stop or improve if changing from hydroxycarbemide to Pegasus?

Hi everyone I have ET and diagnosed 18 months ago. The 9 tablets of hydroxycarbemide per week have now brought my platelets down from 690 to just under 400...

Hi everyone I have ET and diagnosed 18 months ago. The 9 tablets of hydroxycar...

Na56

•9 months ago

22 Replies

Spontaneous remission of some blood counts after Dx

This just is a question of curiosity I've discussed briefly before. If any members have seen something like this it would be interesting to know. I've asked...

This just is a question of curiosity I've discussed briefly before. If any memb...

EPguy

•9 months ago

11 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2023

Memorial Sloan Kettering (MSK) Patient Portal

could emails be answered by AI ?

long term venesection

SCT Indicators

dose change

Exciting News from the MPN Research Foundation for us Jak2'ers

Swollen stomach

High Platelet Diagnosis Update….

vertigo

start of my SCT journey

Insurance?

Jak2 test it's been 11 days and no results yet.. I'm stressed the hell out...

Good news on mutant allele reduction on Jakafi.

Stem Cell Transplant update

MPN expert?

MRI and injuries

Reducing Besremi dosing

Dry mouth

High Risk?

A little lost

Weight issues anyone?

BMB conflicts blood test result on JAK2

Mylo Fibrosis, et al

pegasys and migraines

Confused about diagnosis

Jak2/tet2 mutation

castor, oil patch

Anagralide

Does hair loss stop or improve if changing from hydroxycarbemide to Pegasus?

Spontaneous remission of some blood counts after Dx

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