Posts - MPN Voice | HealthUnlocked

MPN Voice

10,595 members • 14,639 posts

All posts for June 2021

Advice wanted

Hello 1st time on this site but am feeling a bit more positive reading some of the posts. I am JAK positive Myeloproliferative Disorder and Portal Vein...

Hello 1st time on this site but am feeling a bit more positive reading some of t...

taytokavo

•3 years ago

11 Replies

just been diagnosed E>T

hi, this is my second time writing on here, just last week i have been diagnosed with E.T, so i have been feeling ill for a long time, and thought it was the...

hi, this is my second time writing on here, just last week i have been diagnosed...

doglover49

•3 years ago

34 Replies

I haven't written in awhile

I have been on here in awhile. I do get on the forum often. I was diagnosed in 2013 with ET and Jake positive. I started aspirin and not long after that...

I have been on here in awhile. I do get on the forum often. I was diagnosed in ...

Wilma66

•3 years ago

27 Replies

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Ruxolitinib discontinuation in polycythemia vera:

« After discontinuation, only 4 patients (18 %) received subsequent cytoreductive therapy, including hydroxyurea in one patient and pegylated interferon α-2a...

« After discontinuation, only 4 patients (18 %) received subsequent cytoreductiv...

Manouche

•3 years ago

1 Reply

Holistic treatments

Hello is anyone having holistic treatments which have been beneficial? I have had reflexology, gentle massage, acupuncture and cranio sacral therapy and...

Hello is anyone having holistic treatments which have been beneficial? I have ha...

Dream23

•3 years ago

16 Replies

Help! Possible enlarged spleen?

41 y/o m, PV, JAK2+, pegasys 90mcg weekly and twice daily baby aspirin - history of MI and stroke Hey all - looking for some insight on some recent mid-back...

41 y/o m, PV, JAK2+, pegasys 90mcg weekly and twice daily baby aspirin - history...

JT_Marlin

•3 years ago

9 Replies

“I think we’ll cure leukemia in my lifetime”

“Is there anything else you’d like to share about leukemia treatment? I'm very excited because I think we’ll cure leukemia in my lifetime. We’ve already come...

“Is there anything else you’d like to share about leukemia treatment? I'm very ...

Manouche

•3 years ago

7 Replies

RUXOLITINIB

Two weeks ago I was lucky enough to be accepted for the drug Ruxolitinib. Previously I was on Hydroxycarbamide which my body rejected and caused breathing...

Two weeks ago I was lucky enough to be accepted for the drug Ruxolitinib. Previo...

Heather270240

•3 years ago

11 Replies

Updated Phase 2 Data Supporting Long-Term Efficacy of Rusfertide in Polycythemia Vera

Summary of Results: Therapeutic phlebotomies were essentially eliminated and a target hematocrit of less than 45 percent was maintained for the vast majority...

Summary of Results: Therapeutic phlebotomies were essentially eliminated and a ...

Manouche

•3 years ago

7 Replies

Is anyone concerned on the side-effect of taking hydroxyurea for long time?

Is anyone concerned on the side-effect of taking hydroxyurea for long time? I am taking 500mg/day and scared with the toxicity of this medicine in long term....

Is anyone concerned on the side-effect of taking hydroxyurea for long time? I am...

Sam2022

•3 years ago

22 Replies

Hydroxycarbamide and anaemia

I was prescribed hydroxycarbamide last November as my platelets were 870.They have slowly come down but at the moment are staying at 510. The haematologist...

I was prescribed hydroxycarbamide last November as my platelets were 870.They ha...

Hidden

•3 years ago

15 Replies

What does ‘high platelets’ mean? Please

Hi After blood test results the doctor phoned me to tell me the results show high platelets, 485.Until yesterday hadn’t heard of them! Googled ‘high...

Hi After blood test results the doctor phoned me to tell me the results show hi...

JoJenx

•3 years ago

12 Replies

Freedom Day in the UK

Is anyone else worried about the relaxation of the current restrictions this month? I am hoping the work from home guidance will still stand but if people...

Is anyone else worried about the relaxation of the current restrictions this mon...

Jenny_F

•3 years ago

27 Replies

TOWARDS A POTENTIAL OPERATIONAL CURE IN PATIENTS WITH POLYCYTHAEMIA VERA?

Conclusion A sizable proportion of patients with PV achieved operational cure after 5 years’ ropeginterferon alfa-2b treatment. Lower age and lower allele...

Conclusion A sizable proportion of patients with PV achieved operational cure af...

Manouche

•3 years ago

7 Replies

Treatment options in Scotland for PV....

Hi everyone. I'm looking for a bit of help please. I have PV, diagnosed in Jan 2017, and am 42 years old. Currently taking daily baby aspirin and venesections...

Hi everyone. I'm looking for a bit of help please. I have PV, diagnosed in Jan ...

Skyehope

•3 years ago

41 Replies

I have myelofibrosis and am on 20mgs if Ruxolitinib twice daily. However, my spleen has grown to enormous proportions and the Ruxolitini

My Haematologist is putting me on Cytidine. What is the frequency of taking this?

My Haematologist is putting me on Cytidine. What is the frequency of taking this...

billybrock

•3 years ago

9 Replies

Should Hydrea lower my WBC’s?

I have ET JAK2+ on Hydrea. My platelets have lowered but not WBC’s.

Wewo01

•3 years ago

11 Replies

Update 5.6

I am getting along pretty well. Just did my first set of labs since initiating the PEG-IFN. Was at three injections when labs were done. Too soon to tell, but...

I am getting along pretty well. Just did my first set of labs since initiating t...

hunter5582

•3 years ago

28 Replies

Maz: For those of us on Hydrea

Maz, I wonder if you could get some clarification from Professor Claire Harrison on the risk of Leukemic progression in the long term use of hydrea. I ask this...

Maz, I wonder if you could get some clarification from Professor Claire Harrison...

mhos61

•3 years ago

32 Replies

Jakavi. - PV

Hi … can anyone tell me “why” jakavi is easily accessible and affordable in the U.K. ??? Or even Europe????? Would really like to know … I’m in Ontario Canada...

Hi … can anyone tell me “why” jakavi is easily accessible and affordable in the ...

Hidden

•3 years ago

10 Replies

ET and Hypothyroidism

Hi Does anyone with ET also have hypothyroidism. I have been hypothyroid for over 30 years. Diagnosed with ET for about 9 years and only took aspirin until...

Hi Does anyone with ET also have hypothyroidism. I have been hypothyroid for ov...

jodary

•3 years ago

25 Replies

Myelofibrosis and Cataract Surgery Question

Hi. I am new here and appreciate this forum. I have myelofibrosis and just had cataract surgery. Before the surgery I had didn't always see perfectly...

Hi. I am new here and appreciate this forum. I have myelofibrosis and just had...

CocoJ

•3 years ago

6 Replies

Long term Hydroxycarbamide treatment

Although I do not write often, I read the posts every day and feel comforted that other people are experiencing and sharing their stories and experiences. I...

Although I do not write often, I read the posts every day and feel comforted th...

Bobthecob

•3 years ago

16 Replies

Short sharp random pains

Hi. Jak2neg Carl positive 1500mg hydroxycarbamide M-F 1000 SATURDAY 500 SUNDAY Does anyone experience a short sharp repetative random pains. They are like a...

Hi. Jak2neg Carl positive 1500mg hydroxycarbamide M-F 1000 SATURDAY 500 SUNDAY...

Lynne-G

•3 years ago

6 Replies

Random question

Hey everyone. I was just wondering if you need a biopsy to determine if you have Essential or Reactive thrombocythemia. My consultant is very dismissive of...

Hey everyone. I was just wondering if you need a biopsy to determine if you ha...

Assoonas

•3 years ago

23 Replies

Inflammatory Pathophysiology as a Contributor to MPN

« Clinical evidence that JAK2 inhibition by ruxolitinib in MF neither reliably reduces malignant clonal burden nor eliminates cytokine elevations, suggests...

« Clinical evidence that JAK2 inhibition by ruxolitinib in MF neither reliably r...

Manouche

•3 years ago

6 Replies

Red rash

Does anyone find they have a rash on the bottom half of their legs I am ET JAK2 diagnosed since June 2019 and take Hydroxy and aspirin this rash is under the...

Does anyone find they have a rash on the bottom half of their legs I am ET JAK2 ...

Tilly_Rose

•3 years ago

13 Replies

U.S. FDA Accepts PharmaEssentia’s BLA Resubmission for Besremi

The FDA has assigned a six-month review period for the resubmitted application and provided November 13, 2021 as the target Prescription Drug User Fee Act...

The FDA has assigned a six-month review period for the resubmitted application a...

Manouche

•3 years ago

2 Replies

Protagonist Therapeutics Receives FDA Breakthrough Therapy Designation for Rusfertide in Polycythemia Vera

"We are thrilled to receive the Breakthrough Therapy Designation for rusfertide in PV, a serious disease where the need for different and better treatment...

"We are thrilled to receive the Breakthrough Therapy Designation for rusfertide ...

Manouche

•3 years ago

3 Replies

Old Gent!

I am 79 years old and was diagnosed with PRV and tested positive with JAK2. 59% in May 2016.I had 10 sessions of VENESECTION and since July 2016 have been...

I am 79 years old and was diagnosed with PRV and tested positive with JAK2. 59%...

cs1941

•3 years ago

11 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2021

Advice wanted

just been diagnosed E>T

I haven't written in awhile

Ruxolitinib discontinuation in polycythemia vera:

Holistic treatments

Help! Possible enlarged spleen?

“I think we’ll cure leukemia in my lifetime”

RUXOLITINIB

Updated Phase 2 Data Supporting Long-Term Efficacy of Rusfertide in Polycythemia Vera

Is anyone concerned on the side-effect of taking hydroxyurea for long time?

Hydroxycarbamide and anaemia

What does ‘high platelets’ mean? Please

Freedom Day in the UK

TOWARDS A POTENTIAL OPERATIONAL CURE IN PATIENTS WITH POLYCYTHAEMIA VERA?

Treatment options in Scotland for PV....

I have myelofibrosis and am on 20mgs if Ruxolitinib twice daily. However, my spleen has grown to enormous proportions and the Ruxolitini

Should Hydrea lower my WBC’s?

Update 5.6

Maz: For those of us on Hydrea

Jakavi. - PV

ET and Hypothyroidism

Myelofibrosis and Cataract Surgery Question

Long term Hydroxycarbamide treatment

Short sharp random pains

Random question

Inflammatory Pathophysiology as a Contributor to MPN

Red rash

U.S. FDA Accepts PharmaEssentia’s BLA Resubmission for Besremi

Protagonist Therapeutics Receives FDA Breakthrough Therapy Designation for Rusfertide in Polycythemia Vera

Old Gent!

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