Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,731 posts

All posts for May 2021

Replying to a post

Thanks to anyone who replied to my post , I am trying to rep,y to you but am unable to post a reply , keeps telling me something has gone wrong

Thanks to anyone who replied to my post , I am trying to rep,y to you but am una...

Juliet46

•3 years ago

1 Reply

Radiotherapy for sarcomatoid sccs related to ruxolitinib: would welcome dosage experiences

Hi. Thank you in advance for your time. I’m having 50 grays of radiation split into 20 doses ( 5 days a week) to prevent further recurrences of SCCs. on my...

Hi. Thank you in advance for your time. I’m having 50 grays of radiation split i...

Rachelthepotter

•3 years ago

10 Replies

Interferon side effects?

Hi everyone - I’m new to this community but have been reading your posts for several months and have already learned so much from all of you. Thanks! I was...

Hi everyone - I’m new to this community but have been reading your posts for sev...

jevans59

•3 years ago

13 Replies

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Medication

Is anyone on rivaroxaban, bisoprolol, hydroxycarbamide and amlodopine please ?

Juliet46

•3 years ago

2 Replies

Can’t sleep!

Hello. I am so very tired..feel like a zombie! I’ve been on hydroxy for 8 weeks now for E T. I sleep maybe 4 hours a night.. Is insomnia a side effect of this...

Hello. I am so very tired..feel like a zombie! I’ve been on hydroxy for 8 weeks ...

Cokopops

•3 years ago

10 Replies

Is it possible to get travel insurance with a diagnosis of Myleofibrosis?

I have recently been diagnosed with MF after 10 years of ET. Horrible shock and still coming to terms with it - been in tears most of today! Anyway have...

I have recently been diagnosed with MF after 10 years of ET. Horrible shock and ...

Monaco50

•3 years ago

16 Replies

Has anyone that’s prone to depression taken PEG INF / Pegasys?

I guess I’m clutching at straws here but I’m not keen and will probably decide to not start Ruxolitinib at this time, so that just leaves Peg. I will post an...

I guess I’m clutching at straws here but I’m not keen and will probably decide ...

Magentas

•3 years ago

14 Replies

HYDROXY ADVICE.

Just need a little advice on taking my hydroxy. I have been taking 500mg once a day for about 18months, just had a call from my consultant to say to increase...

Just need a little advice on taking my hydroxy. I have been taking 500mg once a ...

Kizzy10

•3 years ago

43 Replies

Should I take hu

Hi do not be scared to take chemotherapy tablets I am in my 50s and been on them for many years they do make you tired but my consultant told me if possible...

Hi do not be scared to take chemotherapy tablets I am in my 50s and been on them...

Scottishterrier

•3 years ago

1 Reply

Newly diagnosed and shocked

I am in top shape. Have been a runner for 30 years and still doing long distances. Really upset learning I need to take a chemo drug for this. Has anyone 60+...

I am in top shape. Have been a runner for 30 years and still doing long distanc...

Sunnylesser

•3 years ago

23 Replies

Worried I have colon cancer

I’m new to this site, but I’ve been having lower left abdominal pain for about 2 months and my platelet count came back high again (492) I will be 22 soon and...

I’m new to this site, but I’ve been having lower left abdominal pain for about 2...

alexisrene57

•3 years ago

11 Replies

I have finally taken the plunge

After all your incredible comments about my artwork I have now set up a Facebook page called “Canine Paintings for Cancer”. It explains the care the MacMillan...

After all your incredible comments about my artwork I have now set up a Facebook...

jillydabrat

•3 years ago

18 Replies

Looking for advice - has anyone stopped taking hydroxyurea

Hi everyone, my husband is 28 and was diagnosed with ET CALR 2 years ago and since then he’s been on hydroxyurea and aspirin. The doctor said he will have to...

Hi everyone, my husband is 28 and was diagnosed with ET CALR 2 years ago and sin...

tigerlove3

•3 years ago

17 Replies

INTERFERON-ALPHA TREATMENT RESULTS IN THE DEPLETION OF DORMANT JAK2-MUTANT HSC IN A MURINE MODEL OF POLYCYTHEMIA VERA

« The majority of patients with Bcr-Abl negative myeloproliferative neoplasms (MPN) have a JAK2-V617F mutation. Targeted therapy with JAK-inhibitors have been...

« The majority of patients with Bcr-Abl negative myeloproliferative neoplasms (M...

Manouche

•3 years ago

18 Replies

Pre-fibrotic MF

So I finally seen my Hemo, and the results show I've got Pre-fibrotic MF. Im JAK2 positive. So he would like to put me on ruxolitinib on my next visit....

So I finally seen my Hemo, and the results show I've got Pre-fibrotic MF. Im JAK...

Kriddle01

•3 years ago

11 Replies

I might get myself one of these.

🤣🤣

wendycu

•3 years ago

5 Replies

High platelet count

Hi again, regarding my high platelets of 650 i have recently 2 weeks ago been put on amitripyline 10mg to treat my migraines could this have elvated my...

Hi again, regarding my high platelets of 650 i have recently 2 weeks ago been pu...

iffs

•3 years ago

7 Replies

Ferments (kefir, komucha, fermented veges)

Has anyone tried these - and what effect have they had on you? I am having these with great success - I did not know I could feel so well since starting them...

Has anyone tried these - and what effect have they had on you? I am having these...

Hidden

•3 years ago

12 Replies

My latest painting

Between knitting my Christmas mice I have carried on painting and this is my latest and biggest. It took me over 20 hours to do over 3 weeks because I had to...

Between knitting my Christmas mice I have carried on painting and this is my lat...

jillydabrat

•3 years ago

33 Replies

Advice on precautions

Hi everyone i hope you're all enjoying the weekend. Im looking for a bit of advice or experience please from those who have have MF/taking jakafi before...

Hi everyone i hope you're all enjoying the weekend. Im looking for a bit of adv...

Marchhare7

•3 years ago

14 Replies

AstraZeneca

Thats me had my second dose today ! feel ok so far just tired but I feel tired most of the time anyway .

Thats me had my second dose today ! feel ok so far just tired but I feel tired m...

indy22

•3 years ago

6 Replies

PharmaEssentia Resubmits Application to the U.S. FDA For Ropeginterferon alfa-2b-njft to Treat Polycythemia Vera (PV)

« The resubmission follows receipt of a complete response letter in March, in which the FDA sought additional information about the administration format with...

« The resubmission follows receipt of a complete response letter in March, in wh...

Manouche

•3 years ago

4 Replies

Support Option whilst taking Meds

I am very newly diagnosed with PV, currently having weekly venesection but yet to start meds and because of my interest in good health and natural options for...

I am very newly diagnosed with PV, currently having weekly venesection but yet t...

Talllboy71

•3 years ago

7 Replies

You’ve still got time to sign up for our #5kMay Fundraising for MPN Voice

We are half way through May, but you’ve still got time to sign up for #5kMay just click on the link below!! The fundraising team would like to say a huge Thank...

We are half way through May, but you’ve still got time to sign up for #5kMay jus...

Mazcd

Partner•3 years ago

Be the first to reply

Antibody test

Received the NHS antibody test today. Just done the finger prick blood test and now have to wait ten to 15 minutes for the test results. The accompanying...

Received the NHS antibody test today. Just done the finger prick blood test an...

jillydabrat

•3 years ago

15 Replies

A day of surprises

Hi all Yesterday I had the first face to face consultation since the pandemic. I must say I was wary of the reasons for this but went along anyway. The...

Hi all Yesterday I had the first face to face consultation since the pandemic. ...

ConniesDad

•3 years ago

14 Replies

HRT and MPNs

I am just watching the Davina programme about menopause and was wondering what the risks are of HRT for someone like me with ET. I am 50 this year and possibly...

I am just watching the Davina programme about menopause and was wondering what t...

Jenny_F

•3 years ago

16 Replies

BMB date arranged for 31 May

I’ve been given a date for the BMB with a follow up phone call two weeks later, but as I won’t have seen my haematologist before then, I was wondering if...

I’ve been given a date for the BMB with a follow up phone call two weeks later, ...

Megabyte

•3 years ago

11 Replies

Aspirin

Hi all just come back from seeing my hematologist , I was preparing myself to start hydroxycarbamide but he’s now decided to just carry on with aspirin as he...

Hi all just come back from seeing my hematologist , I was preparing myself to st...

lyncd66

•3 years ago

8 Replies

Has anyone discontinued Hydroxyurea? Why?

So ive been taking Hydroxy for over 2 years now and my quality of life improved during that time. This past six months however, its taking a dive. Muscle pain...

So ive been taking Hydroxy for over 2 years now and my quality of life improved ...

BloodZero

•3 years ago

41 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2021

Replying to a post

Radiotherapy for sarcomatoid sccs related to ruxolitinib: would welcome dosage experiences

Interferon side effects?

Medication

Can’t sleep!

Is it possible to get travel insurance with a diagnosis of Myleofibrosis?

Has anyone that’s prone to depression taken PEG INF / Pegasys?

HYDROXY ADVICE.

Should I take hu

Newly diagnosed and shocked

Worried I have colon cancer

I have finally taken the plunge

Looking for advice - has anyone stopped taking hydroxyurea

INTERFERON-ALPHA TREATMENT RESULTS IN THE DEPLETION OF DORMANT JAK2-MUTANT HSC IN A MURINE MODEL OF POLYCYTHEMIA VERA

Pre-fibrotic MF

I might get myself one of these.

High platelet count

Ferments (kefir, komucha, fermented veges)

My latest painting

Advice on precautions

AstraZeneca

PharmaEssentia Resubmits Application to the U.S. FDA For Ropeginterferon alfa-2b-njft to Treat Polycythemia Vera (PV)

Support Option whilst taking Meds

You’ve still got time to sign up for our #5kMay Fundraising for MPN Voice

Antibody test

A day of surprises

HRT and MPNs

BMB date arranged for 31 May

Aspirin

Has anyone discontinued Hydroxyurea? Why?

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