Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for November 2023

painkillers for toothache

I have ET and am on Pegasys Interferon. Hello My question is, I have very bad toothache and can’t see a dentist for a couple of weeks ! I want to take a...

I have ET and am on Pegasys Interferon. Hello My question is, I have very bad...

Abrams

•1 year ago

20 Replies

Dizziness Nausea

Have PV and been on Hydroxycarbamide since 2021 and tolerated well. Last few month have dizziness and Nausea on and off and not good. prescribed Domperidone....

Have PV and been on Hydroxycarbamide since 2021 and tolerated well. Last few mon...

Paraic2021

•1 year ago

27 Replies

Returned JAK2 increasing

A couple of months ago I posted that a small amount of JAK2 had reappeared just over a year post transplant. This has now increased to 21%. My blood counts are...

A couple of months ago I posted that a small amount of JAK2 had reappeared just ...

Otterfield

•1 year ago

45 Replies

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Good end to 2023

I got what will be my final labs for the year yesterday! And I was so relieved and happy. Hct 42.9 (and holding 😆), wbcs 4.4 and platelets 347! Last year...

I got what will be my final labs for the year yesterday! And I was so relieved ...

KLCTJC

•1 year ago

15 Replies

peginf and high leukocytes

Hello mpn people, I have ET. Started peg inf three weeks ago after 2.5 years on Anagrelide. Reduced ana from two to one a day Friday and am taking 45 mg inf a...

Hello mpn people, I have ET. Started peg inf three weeks ago after 2.5 years on...

ts75

•1 year ago

8 Replies

elevated basophils

hi all, I’ve just recently received my latest blood test results which came back with elevated basophils of 0.13. I’m PV, Jak2, low risk, 42yrs old and...

hi all, I’ve just recently received my latest blood test results which came ba...

Steve_Essex

•1 year ago

8 Replies

Disappointed

I should have had a phone call from Guys yesterday about trial drugs but nobody called. 😞 maybe I’ll hear something soon.

I should have had a phone call from Guys yesterday about trial drugs but nobody ...

lizzziep

•1 year ago

10 Replies

How long does it take to be referred to Guys hospital?

Hi I’m seeing my haematologist just before Christmas and am going to ask for shared care with Guys hospital. I just wondered how long it usually takes to hear...

Hi I’m seeing my haematologist just before Christmas and am going to ask for sha...

Na56

•1 year ago

23 Replies

Raynauds

hi has anyone developed Raynauds syndrome from ET ?

Nc3500

•1 year ago

9 Replies

Dizzy/full head

Happy Holiday Season to you all. I was diagnosed 12/20 started with phlebotomy only and then my choice with my Hemo/Onocoligist decided to go right on...

Happy Holiday Season to you all. I was diagnosed 12/20 started with phlebotomy ...

josup26

•1 year ago

14 Replies

Update - Critical illness cover

Just an update. I was diagnosed with ET Calr back in August- I had a critical illness cover with Zurich Life. I sent away my claim in September & Last week...

Just an update. I was diagnosed with ET Calr back in August- I had a critical il...

RadRuby

•1 year ago

2 Replies

High neutrophil count😱

My wife's last blood test showed her platelets were up at @800 And her neutrophil count at over 70, her Hgb was 116, hematocrit was 0.38 which is high for her,...

My wife's last blood test showed her platelets were up at @800 And her neutrophi...

jointpain

•1 year ago

3 Replies

bloods

my haemoglobin is 156 and rbc is 5.05 but platelets down to 430 - thoughts?

Carthe

•1 year ago

5 Replies

Modbury123

Hello this is the first time I have submitted a request maybe you can help me solve this please . I have ET plus JAK2 I take 500gm Hydroxycarbamide plus...

Hello this is the first time I have submitted a request maybe you can help me so...

Modbury123

•1 year ago

11 Replies

ET JAK2neg and Nucleated rbc’s

Hello everyone - my partner was diagnosedET JAK2 negative in 2009. The early years were difficult as the platelet count was in the very very high hundreds and...

Hello everyone - my partner was diagnosedET JAK2 negative in 2009. The early yea...

Richinspirit

•1 year ago

2 Replies

Allele fraction and Medicare

I decided to see if I could find my Medicare Advantage provider's policy on allele fraction and came up with a page from their policies and procedures manual...

I decided to see if I could find my Medicare Advantage provider's policy on alle...

sbs_patient

•1 year ago

10 Replies

Blood

My hematocric is low and I have had my hydroxycarbamide reduced ,now a blood test shows i am low in iron and have to have an iron infusion,has anyone else...

My hematocric is low and I have had my hydroxycarbamide reduced ,now a blood tes...

ChillyAsh34

•1 year ago

5 Replies

follow up appointment

I have been on hydroxycarbamide for six weeks and had a follow up appointment today. My platelet count was 456 but now up to 476. My medication was one 500mg...

I have been on hydroxycarbamide for six weeks and had a follow up appointment to...

Maxpenny

•1 year ago

12 Replies

Happy Thanksgiving

We have much to be thankful for. Significant progress understanding and treating MPNs is underway. Newly available treatment options are benefiting us...

We have much to be thankful for. Significant progress understanding and tre...

hunter5582

•1 year ago

45 Replies

Claim on my Life Insurance?

I was advised with my MPN cancer diagnosis ' I may be able to claim on my L&G life insurance in the UK? Not sure if this is correct, can anyone advise? TIA...

I was advised with my MPN cancer diagnosis ' I may be able to claim on my L&G li...

Pappafraser

•1 year ago

4 Replies

Questions about pegasys please

Hi everyone I have Et and have been on hydroxycarbemide 9 tablets a week for the last 20 months. As my platelets have increased to 461 my haematologist is...

Hi everyone I have Et and have been on hydroxycarbemide 9 tablets a week for the...

Na56

•1 year ago

12 Replies

Update appointment

Hi all Just update on my appointment my platelets now on 896 with a few symptoms but I've had quite few infections too plus a kidney stone and ovaries cysts,...

Hi all Just update on my appointment my platelets now on 896 with a few symptoms...

Jody00

•1 year ago

2 Replies

Tapering off Jakafi

I have progressed to Acute Myelo Luekemia (AML) from PMF . So, I am supposed to stop taking the 15mg Jakafi for the chemo treatment of the AML. I skipped a...

I have progressed to Acute Myelo Luekemia (AML) from PMF . So, I am supposed to ...

Jwake2

•1 year ago

11 Replies

RSV vaccine

Are those with MPNs more susceptible to RSV? Should we get the vaccine?

Whitehair51

•1 year ago

2 Replies

vaccine

Hello Everyone, Happy Thanksgiving to those that celebrate! My question is about the Covid vaccine. I do plan to get it soon, yet would like to know if...

Hello Everyone, Happy Thanksgiving to those that celebrate! My question is abo...

Pogm

•1 year ago

3 Replies

Good news - I think!

I’ve just had a follow up call from Guys about my recent appointment there. One of the consultants is going to phone me next week about going on a trial for...

I’ve just had a follow up call from Guys about my recent appointment there. One ...

lizzziep

•1 year ago

27 Replies

dehydration - update

I note on my fbc readings my hct is higher end too which can mean dehydration…. So any thoughts on deyhdration and raised platelets? Can being mildly...

I note on my fbc readings my hct is higher end too which can mean dehydration…. ...

Carthe

•1 year ago

34 Replies

sudden purple mark over eye

hi - background is that I’m being watched for slightly elevated platelets and wbc but I’ve tested neg for gene mutations and had a normal bmb several years...

hi - background is that I’m being watched for slightly elevated platelets and wb...

Labbymom

•1 year ago

2 Replies

Update 7.7.5 = Benign

Thanks to all who responded to my last post. The news on the growth removed from my face was good news. It was benign, a Seborrheic Keratosis that suddenly...

Thanks to all who responded to my last post. The news on the growth removed fro...

hunter5582

•1 year ago

46 Replies

Happiest Holidays Family

Happy Thanksgiving, I hope everyone has a Joyful Holiday filled with Love 💗 Christy

Happy Thanksgiving, I hope everyone has a Joyful Holiday filled with Love 💗 Chr...

DiveGoddess

•1 year ago

7 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2023

painkillers for toothache

Dizziness Nausea

Returned JAK2 increasing

Good end to 2023

peginf and high leukocytes

elevated basophils

Disappointed

How long does it take to be referred to Guys hospital?

Raynauds

Dizzy/full head

Update - Critical illness cover

High neutrophil count😱

bloods

Modbury123

ET JAK2neg and Nucleated rbc’s

Allele fraction and Medicare

Blood

follow up appointment

Happy Thanksgiving

Claim on my Life Insurance?

Questions about pegasys please

Update appointment

Tapering off Jakafi

RSV vaccine

vaccine

Good news - I think!

dehydration - update

sudden purple mark over eye

Update 7.7.5 = Benign

Happiest Holidays Family

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