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Experiences with
Hydroxycarbamide
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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
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
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
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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
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
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
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
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
1 year ago
scalp problem in Hydroxy
very dry scalp on
Hydroxycarbamide
! Any one else with Et/PV have scalp problems? my scalp is very crusty and I’m sure it’s the drug Hydroxy that’s caused this. Any advise welcome. Haze.
very dry scalp on
Hydroxycarbamide
! Any one else with Et/PV have scalp problems? my scalp is very crusty and I’m sure it’s the drug Hydroxy that’s caused this. Any advise welcome. Haze.
HazeBlue
in
MPN Voice
2 years ago
ET & Covid
Hi all..I was diagnosrd with ET and Jak2 positive and prescribed daily 500mg
Hydroxycarbamide
and 75mg aspirin..platelets 6 weeks ago at 565. I have just tested positive for Covid and.await a NHS call regarding antivirals.
Hi all..I was diagnosrd with ET and Jak2 positive and prescribed daily 500mg
Hydroxycarbamide
and 75mg aspirin..platelets 6 weeks ago at 565. I have just tested positive for Covid and.await a NHS call regarding antivirals.
Alfiesarah
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
1 year ago
Essential Thrombocythaemia
Hi, I have just been diagnosed with a rear blood condition called Essential Thrombocythaemia (ET The courses of treatment offered to me are
Hydroxycarbamide
and Pegasys.
Hi, I have just been diagnosed with a rear blood condition called Essential Thrombocythaemia (ET The courses of treatment offered to me are
Hydroxycarbamide
and Pegasys.
Snowking
in
Leukaemia CARE
2 years ago
Taking Hydroxycarbamide?…
My Doctor now prescribed me
Hydroxycarbamide
(alongside aspirin 75 mg) to avoid risk of thrombosis. This medicine is pure poison and I’d rather take only the aspirin. I’m also looking for any natural substance to help. Any ideas or opinions would be appreciated.
My Doctor now prescribed me
Hydroxycarbamide
(alongside aspirin 75 mg) to avoid risk of thrombosis. This medicine is pure poison and I’d rather take only the aspirin. I’m also looking for any natural substance to help. Any ideas or opinions would be appreciated.
Holden65
in
MPN Voice
2 years ago
Choice of treatment
I have chosen venesection rather than increase
hydroxycarbamide
which was advised. I asked option of going onto interferon having read the posts here over the last few months but was advised by the consultant that there are more adverse side affects interferon? Is she correct?
I have chosen venesection rather than increase
hydroxycarbamide
which was advised. I asked option of going onto interferon having read the posts here over the last few months but was advised by the consultant that there are more adverse side affects interferon? Is she correct?
Swim360
in
MPN Voice
2 years ago
Is ET hereditary ?
I currently take
hydroxycarbamide
, but it seems that he isn't on any medication for it. I understand this is a very rare condition, so alarm bells are ringing as to whether it is hereditary. Thank you .
I currently take
hydroxycarbamide
, but it seems that he isn't on any medication for it. I understand this is a very rare condition, so alarm bells are ringing as to whether it is hereditary. Thank you .
Catbells66
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
1 year 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
1 year 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
1 year ago
MF from ET
I have early stage MF from ET, and I‘ve had a headache for 12 days, with pressure over the left eye, and lightning flashes in the left eye. I just wondered if anyone else has had this? My doctor wants me to start taking aspirin twice a day now, & if that doesn’t work he will start me on hydroxyurea.
I have early stage MF from ET, and I‘ve had a headache for 12 days, with pressure over the left eye, and lightning flashes in the left eye. I just wondered if anyone else has had this? My doctor wants me to start taking aspirin twice a day now, & if that doesn’t work he will start me on hydroxyurea.
Arthandiwe
in
Fight MPN
1 year ago
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