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Experiences with
Hydroxycarbamide
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dry hair
don’t know if this helps anyone lots of ladies asked about hair going very dry and brittle especially on
hydroxycarbamide
I have found a simple solution my hair is very glossy and very good condition,put a teaspoon of olive oil in a dish ,a teaspoon of argon oil and a teaspoon of aloe Vera gel the sort
don’t know if this helps anyone lots of ladies asked about hair going very dry and brittle especially on
hydroxycarbamide
I have found a simple solution my hair is very glossy and very good condition,put a teaspoon of olive oil in a dish ,a teaspoon of argon oil and a teaspoon of aloe Vera gel the sort
ChillyAsh34
in
MPN Voice
1 year ago
PV and shingles
Hi. I am on Hydroxyurea unfortunately, since a year ago, one capsule, although I certainly need a second one with my platelets nearing 750. It lowers my immune system, years ago it did the same and I stopped it then. After a terrible cold with persistent cough this winter, that lasted one month, now
Hi. I am on Hydroxyurea unfortunately, since a year ago, one capsule, although I certainly need a second one with my platelets nearing 750. It lowers my immune system, years ago it did the same and I stopped it then. After a terrible cold with persistent cough this winter, that lasted one month, now
Kelly2
in
MPN Voice
1 year ago
Ramipril
Hello I wondered if anyone takes Ramipril alongside
Hydroxycarbamide
. Thank you
Hello I wondered if anyone takes Ramipril alongside
Hydroxycarbamide
. Thank you
Juliet46
in
MPN Voice
2 years ago
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Shocking Price of Jakafi
So I am in the USA. I have ET diagnosed in 2018. Have taken Hydroxyurea since then. I have been having lots of side effects from Hydrea, so my Dr. suggested a possible change to Jakafi. When I called my mail order pharmacy to price it, I was told that for a 90 day supply it would be $20,857, of which
So I am in the USA. I have ET diagnosed in 2018. Have taken Hydroxyurea since then. I have been having lots of side effects from Hydrea, so my Dr. suggested a possible change to Jakafi. When I called my mail order pharmacy to price it, I was told that for a 90 day supply it would be $20,857, of which
dogsandhorses
in
MPN Voice
1 year ago
Abbas Weighs Options in Patient With JAK2-Mutated Polycythemia Vera
During a Targeted Oncology™ Case-Based Roundtable™ event, Jonathan Abbas, MD, discussed data on therapies for a patient with polycythemia vera who did not adequately respond to hydroxyurea. https://www.targetedonc.com/view/abbas-weighs-options-in-patient-with-jak2-mutated-polycythemia-vera
During a Targeted Oncology™ Case-Based Roundtable™ event, Jonathan Abbas, MD, discussed data on therapies for a patient with polycythemia vera who did not adequately respond to hydroxyurea. https://www.targetedonc.com/view/abbas-weighs-options-in-patient-with-jak2-mutated-polycythemia-vera
Manouche
in
MPN Voice
1 year ago
Really??: Pruritus May Mark Severe Symptomology in Myeloproliferative Neoplasms"- From "Hematology Advisor"- Some surprising findings...
In myeloproliferative neoplasms (MPNs), patients reporting pruritus had more symptoms, greater symptoms severity, and were more likely to experience disease evolution, according to results of a questionnaire-based study published in Journal of the European Academy of Dermatology and Venerology[i]. [The
In myeloproliferative neoplasms (MPNs), patients reporting pruritus had more symptoms, greater symptoms severity, and were more likely to experience disease evolution, according to results of a questionnaire-based study published in Journal of the European Academy of Dermatology and Venerology[i]. [The
PhysAssist
in
MPN Voice
1 year ago
Besremi Side Effects
Hello, I would like to hear from anyone who has experience with Besremi. After 9 years on Hydroxyurea, it stopped working for me. I now have some scarring in the bone marrow, as per biopsy. I am a 60 year old female, and now on Besremi since February 1, 2023 , about 10 weeks. However, two weeks ago
Hello, I would like to hear from anyone who has experience with Besremi. After 9 years on Hydroxyurea, it stopped working for me. I now have some scarring in the bone marrow, as per biopsy. I am a 60 year old female, and now on Besremi since February 1, 2023 , about 10 weeks. However, two weeks ago
Artelu
in
MPN Voice
1 year ago
Redundant colon anyone?
Two years ago I started my
hydroxycarbamide
regimen for ET and at the time I was a sveldt 54 kg. Now 2 years down the track not only have a added 5 kg to that number, but have adopted a 'balloon' belly, which is uncomfortably bloated. Thankfully there is no pain.
Two years ago I started my
hydroxycarbamide
regimen for ET and at the time I was a sveldt 54 kg. Now 2 years down the track not only have a added 5 kg to that number, but have adopted a 'balloon' belly, which is uncomfortably bloated. Thankfully there is no pain.
Hidden
in
MPN Voice
1 year ago
Hydroxyurea
I was finally diagnosed after asking my dr‘s why my platelets stayed so high. Finally a new internal medicine doc sent me to a hemotologist/oncologist. +JAK2. I am taking my first Hydroxyurea capsule tonight. Does any thing happen right away? Thanks
I was finally diagnosed after asking my dr‘s why my platelets stayed so high. Finally a new internal medicine doc sent me to a hemotologist/oncologist. +JAK2. I am taking my first Hydroxyurea capsule tonight. Does any thing happen right away? Thanks
Plate
in
MPN Voice
1 year ago
Introduction and question
Hello everyone. My name is Tiffany. I've been reading through some of the posts relevant to my interests but haven't had a need to post myself until now. My mother was diagnosed with polycythemia (follow-up tests show she does have JAK2 mutation) this past August, right around her 74th birthday
Hello everyone. My name is Tiffany. I've been reading through some of the posts relevant to my interests but haven't had a need to post myself until now. My mother was diagnosed with polycythemia (follow-up tests show she does have JAK2 mutation) this past August, right around her 74th birthday
onlineallthetime
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
1 year ago
HU to Peg Transition Problems -
Hello I am asking for help with difficulties I am having transitioning from hydroxyurea to Pegasys. I am 58, male, CalR-ET, diagnosed in 2008, started HU in 2011. After about 9 years stable on HU (0.75 g/day), with platelets in the range 850-1050 and generally feeling OK, I developed resistance to
Hello I am asking for help with difficulties I am having transitioning from hydroxyurea to Pegasys. I am 58, male, CalR-ET, diagnosed in 2008, started HU in 2011. After about 9 years stable on HU (0.75 g/day), with platelets in the range 850-1050 and generally feeling OK, I developed resistance to
LongETinUS
in
MPN Voice
1 year ago
Update
I look back fondly on the days when I was only worried about having n MPN. In the past few weeks I developed a blood clot. That has led to initiation of hydroxyurea. Fortunately, I am tolerating that well and platelets are starting to come down. Then I asked that intermittent pain on my left side be
I look back fondly on the days when I was only worried about having n MPN. In the past few weeks I developed a blood clot. That has led to initiation of hydroxyurea. Fortunately, I am tolerating that well and platelets are starting to come down. Then I asked that intermittent pain on my left side be
Mtnlife
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
CALR ET and hydroxyurea
Had my quarterly hemo visit today, bloods overall were good but platelets are just under 1.2M. My new hematologist at MD here in Houston is starting me on hydroxyurea and I am a little nervous about it. He expressed that interferon is an option down the line but wanted to start here because he wants
Had my quarterly hemo visit today, bloods overall were good but platelets are just under 1.2M. My new hematologist at MD here in Houston is starting me on hydroxyurea and I am a little nervous about it. He expressed that interferon is an option down the line but wanted to start here because he wants
dbus1417
in
MPN Voice
1 year ago
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
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
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
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
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