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Hydroxycarbamide
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Besremi trial
Two New Trials Testing Ropeginterferon (Besremi) in PV and ETMar 3, 2023John Mascarenhas, MDAssociate Professor & Director of the Adult Leukemia Program0 seconds of 8 minutes, 40 secondsDESCRIPTIONTRANSCRIPTDr. Mascarenhas: Hi, I'm John Mascarenhas, a professor of medicine at the Icahn School of Medicine
Two New Trials Testing Ropeginterferon (Besremi) in PV and ETMar 3, 2023John Mascarenhas, MDAssociate Professor & Director of the Adult Leukemia Program0 seconds of 8 minutes, 40 secondsDESCRIPTIONTRANSCRIPTDr. Mascarenhas: Hi, I'm John Mascarenhas, a professor of medicine at the Icahn School of Medicine
wateron
in
MPN Voice
1 year ago
Kidneys affected by Hydroxyurea?
Was admitted to hospital last week due to severely low sodium levels and creatinine levels were way off normal. Admitting diagnosis was acute kidney failure. Nephrologists were not sure what was causing the change in my kidney’s health. They wondered if the Hydroxyurea could be playing a part
Was admitted to hospital last week due to severely low sodium levels and creatinine levels were way off normal. Admitting diagnosis was acute kidney failure. Nephrologists were not sure what was causing the change in my kidney’s health. They wondered if the Hydroxyurea could be playing a part
KHardey
in
MPN Voice
1 year ago
Thank you!
After reading on this forum the importance of working with an MPN specialist and accessing the database provided I have changed my provider. It makes a world of difference! My new doctor confirmed the polycythemia diagnosis via bone marrow biopsy but also found No JAK2 mutation. The hydroxyurea that
After reading on this forum the importance of working with an MPN specialist and accessing the database provided I have changed my provider. It makes a world of difference! My new doctor confirmed the polycythemia diagnosis via bone marrow biopsy but also found No JAK2 mutation. The hydroxyurea that
Hidden
in
MPN Voice
1 year ago
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Switching from HU To Pegasys: Skin Cancer Risk
Six months ago I was diagnosed with ET Jak2. I’m high risk (age, prior stroke) and I started Hydroxyurea 500mg/day. All my counts came down nicely and my main symptom (brain fog) resolved. I had minimal HU side effects (a bit of initial hair thinning. dry skin/hair, a few mouth ulcers easily managed
Six months ago I was diagnosed with ET Jak2. I’m high risk (age, prior stroke) and I started Hydroxyurea 500mg/day. All my counts came down nicely and my main symptom (brain fog) resolved. I had minimal HU side effects (a bit of initial hair thinning. dry skin/hair, a few mouth ulcers easily managed
Minify
in
MPN Voice
1 year ago
venesections over the long term
my red blood cell count is now down to 0.44 I have in the past tried
hydroxycarbamide
but had to stop when my platelet level dropped significantly has anyone else been in such a situation and what have the doctors recommended for the long term?
my red blood cell count is now down to 0.44 I have in the past tried
hydroxycarbamide
but had to stop when my platelet level dropped significantly has anyone else been in such a situation and what have the doctors recommended for the long term?
Paul1214
in
MPN Voice
2 years ago
Hydroxycarbamide twice a day - am & pm?
I began taking
hydroxycarbamide
in October 2022, one tablet per day. In December my dosage went up to 9 per week and the consultant said that I didn't have to take two together in the morning, I could have one in the morning and one at night twice a week.
I began taking
hydroxycarbamide
in October 2022, one tablet per day. In December my dosage went up to 9 per week and the consultant said that I didn't have to take two together in the morning, I could have one in the morning and one at night twice a week.
HoundSept2022
in
MPN Voice
1 year ago
ET JAK2 Now Starting Peg Via IV?
First Hydroxyurea and horrible severe side effects overwhelmed me. Switched to Anagrelide with less intense side effects on low dose but upon dose increase triggered serious heart and liver effects. Stopped Anagrelide in December, have been off of ET drug since then. Side effects have gone away,
First Hydroxyurea and horrible severe side effects overwhelmed me. Switched to Anagrelide with less intense side effects on low dose but upon dose increase triggered serious heart and liver effects. Stopped Anagrelide in December, have been off of ET drug since then. Side effects have gone away,
Mishie14
in
MPN Voice
1 year ago
Interesting
Clinical Review of ropeginterferon alfa-2b Suggests Amended Dosing Schedule May Support Improved Clinical Outcomes in Polycythemia Vera Review of studies published in Frontiers in Oncology highlights dosing considerations that may help more patients achieve earlier complete hematological response
Clinical Review of ropeginterferon alfa-2b Suggests Amended Dosing Schedule May Support Improved Clinical Outcomes in Polycythemia Vera Review of studies published in Frontiers in Oncology highlights dosing considerations that may help more patients achieve earlier complete hematological response
wateron
in
MPN Voice
1 year ago
2nd dose of interferon
l have awful flu like symptoms, headache and migraine a week following my first Pegasys injection also ceased
Hydroxycarbamide
on the same day. 2nd injection this Thursday.
l have awful flu like symptoms, headache and migraine a week following my first Pegasys injection also ceased
Hydroxycarbamide
on the same day. 2nd injection this Thursday.
Hidden
in
MPN Voice
2 years ago
Red skin impression shoulders
I'm ET CALR on
Hydroxycarbamide
, clopidogrel and omezaprole. Also sore burning feet, more so right foot under the ball rear of toes. Thanks Mark
I'm ET CALR on
Hydroxycarbamide
, clopidogrel and omezaprole. Also sore burning feet, more so right foot under the ball rear of toes. Thanks Mark
Smudger0122
in
MPN Voice
2 years ago
Very scared for life. Need assistance
Hi. I'm 23 year old male. I've been known to have polycythemia since 2018, records showing high hb since 2016 itself.I made several trips to the hematologist. Initially I've been suggested just jak2v617f and exon 12 mutations and epo level that came 10.5 m/iu I changed the doctor because he wouldn't
Hi. I'm 23 year old male. I've been known to have polycythemia since 2018, records showing high hb since 2016 itself.I made several trips to the hematologist. Initially I've been suggested just jak2v617f and exon 12 mutations and epo level that came 10.5 m/iu I changed the doctor because he wouldn't
Xuzy
in
MPN Voice
1 year ago
Second opinion
I am on
hydroxycarbamide
, which they have kept increasing the dosage, but it is failing to keep my platelet levels etc in check.
I am on
hydroxycarbamide
, which they have kept increasing the dosage, but it is failing to keep my platelet levels etc in check.
Georgehb
in
MPN Voice
2 years ago
Is weight loss even possible?
Greetings all, Coming up to 2 yrs on
hydroxycarbamide
and JAK 2 + and it seems like I'm hitting a brick wall with even maintaining my pre-medication weight.
Greetings all, Coming up to 2 yrs on
hydroxycarbamide
and JAK 2 + and it seems like I'm hitting a brick wall with even maintaining my pre-medication weight.
Hidden
in
MPN Voice
2 years ago
Change from PV?
I was diagnosed 3 years ago with PV due to being Jak2+ & having an elevated hematocrit. I was later diagnosed as MPN - U based on my April 2022 BMB. I had no scarring in my bone marrow either.I was on hydroxyurea for a year but stopped in November due to persistent nausea. I only take aspirin. Now my
I was diagnosed 3 years ago with PV due to being Jak2+ & having an elevated hematocrit. I was later diagnosed as MPN - U based on my April 2022 BMB. I had no scarring in my bone marrow either.I was on hydroxyurea for a year but stopped in November due to persistent nausea. I only take aspirin. Now my
ERei
in
MPN Voice
2 years ago
Can you keep focus in large group settings?
I take
hydroxycarbamide
, blood thinners and statins. I really struggle to focus in a large group setting e.g. a party or meeting. People talk to me and I feel as though they go out of focus. I can nod, show appropriate reactions etc but communication on my end is limited.
I take
hydroxycarbamide
, blood thinners and statins. I really struggle to focus in a large group setting e.g. a party or meeting. People talk to me and I feel as though they go out of focus. I can nod, show appropriate reactions etc but communication on my end is limited.
Conneryfan
in
MPN Voice
2 years ago
brain fog
I’d love to know how usual it is to have brain fog when on
Hydroxycarbamide
I’d love to know how usual it is to have brain fog when on
Hydroxycarbamide
April-May
in
MPN Voice
2 years ago
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 week, and my platelets are now down into the 500s. I had an appointment last week with my hematologist/oncologist and brought to her attention that
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 week, and my platelets are now down into the 500s. I had an appointment last week with my hematologist/oncologist and brought to her attention that
Maximo06
in
MPN Voice
2 years ago
Recombinant Interferon-β in the Treatment of Polycythemia Vera
Simple Summary: « The myeloproliferative neoplasms (MPNs) are chronic blood cancers characterized by elevated blood cell counts and, after decades, the development of bone marrow failure. Blood clots are common and contribute massively to the symptom burden. Treatment with interferon (IFN) alpha-2
Simple Summary: « The myeloproliferative neoplasms (MPNs) are chronic blood cancers characterized by elevated blood cell counts and, after decades, the development of bone marrow failure. Blood clots are common and contribute massively to the symptom burden. Treatment with interferon (IFN) alpha-2
Manouche
in
MPN Voice
2 years ago
Hydroxyurea. And Red Blood Cells
Does Hydroxyurea lower red blood cells and how long does it take.
Does Hydroxyurea lower red blood cells and how long does it take.
Rainyday22
in
MPN Voice
2 years ago
Allele Burden (this is a different question - I PROMISE!!!)
3 years ago my blood was tested for Jak2. The report said: "My JAK2 mutation comprises > 60% of [u]
total JAK2
[/u], suggestive of a homozygous/hemizygous mutation. Patients with this type of mutation usually have more aggressive disease." I went on hydroxyurea in Dec 2021. My bloodwork was
3 years ago my blood was tested for Jak2. The report said: "My JAK2 mutation comprises > 60% of [u]
total JAK2
[/u], suggestive of a homozygous/hemizygous mutation. Patients with this type of mutation usually have more aggressive disease." I went on hydroxyurea in Dec 2021. My bloodwork was
ERei
in
MPN Voice
2 years ago
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