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Allele burden 26%
MPL Et just seen BM result which says MPL allele burden 26% not quite sure if this is high or low or not important been offered HU or peg interferon trying to research. Thanks
MPL Et just seen BM result which says MPL allele burden 26% not quite sure if this is high or low or not important been offered HU or peg interferon trying to research. Thanks
Sprat19
in
MPN Voice
3 years ago
Is this just happening to me ?
Hi everyone, sorry if this is A little gory, but wondering if anyone else has been experiencing the same. On 29th sept while I was out I had dioreah pour from me, no warning, and not feeling unwell at all. Got home cleaned up :-( next day feeling unwell, can’t eat, woozy/giddy slept all day, the thing
Hi everyone, sorry if this is A little gory, but wondering if anyone else has been experiencing the same. On 29th sept while I was out I had dioreah pour from me, no warning, and not feeling unwell at all. Got home cleaned up :-( next day feeling unwell, can’t eat, woozy/giddy slept all day, the thing
Yvette49
in
MPN Voice
3 years ago
Jury summons.
So I’ve just been asked to do jury service. I live in north west London and it would be at courts in south east London which are over an hour away on the tube. I’ve not been on public transport for 18 months, apart from a few times. I don’t think I even went on the tube in rush hour pre pandemic so
So I’ve just been asked to do jury service. I live in north west London and it would be at courts in south east London which are over an hour away on the tube. I’ve not been on public transport for 18 months, apart from a few times. I don’t think I even went on the tube in rush hour pre pandemic so
Jonnymitts
in
MPN Voice
3 years ago
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What are your thoughts about Interferon Vs. Hydroxurea?
I’ve been reading different studies about this and most of them says Interferon is advisable for younger patients and for pregnancy but current practice is using Hydrea as a first line of defense instead of Interferon? I would love to hear your experience about this. I’m still on a low-dose aspirin
I’ve been reading different studies about this and most of them says Interferon is advisable for younger patients and for pregnancy but current practice is using Hydrea as a first line of defense instead of Interferon? I would love to hear your experience about this. I’m still on a low-dose aspirin
livelovelaugh1992
in
MPN Voice
3 years ago
ET and PV
Hi all I was diagnosed with ET last month after a positive JAK2 and various symptoms (of which I thought I was aneamic) so came as a shock. I have been on Interferon for 4 weeks and went back today and got told my red blood cell count is high and PV got mentioned! Can you have both or is it one or the
Hi all I was diagnosed with ET last month after a positive JAK2 and various symptoms (of which I thought I was aneamic) so came as a shock. I have been on Interferon for 4 weeks and went back today and got told my red blood cell count is high and PV got mentioned! Can you have both or is it one or the
sweetiecake
in
MPN Voice
3 years ago
Night Sweats
Hi everyone, I am looking for some feedback on night sweats. 42 years old (live in Ireland), diagnosed with ET in 2017, progressed to MF in 2020. Been having horrendous night sweats since February 2018. Under the care of Haematologist I have tried Jakafi, HU, and Interferon, none of which had any impact
Hi everyone, I am looking for some feedback on night sweats. 42 years old (live in Ireland), diagnosed with ET in 2017, progressed to MF in 2020. Been having horrendous night sweats since February 2018. Under the care of Haematologist I have tried Jakafi, HU, and Interferon, none of which had any impact
Navy12
in
MPN Voice
3 years ago
Video of the MPN Voice ‘Virtual’ Patients’ Forum – Liverpool/Chester/N Wales, now available to view
Held on Friday 15th October 2021 The video of the forum is now available to view on the MPN Voice YouTube channel. Click on the link below to view the video.
FORUM VIDEO
https://www.youtube.com/watch?v=pGpK-UeEhzs This MPN Voice online patients’ forum was hosted by Dr Nauman Butt and Dr Rachel
Held on Friday 15th October 2021 The video of the forum is now available to view on the MPN Voice YouTube channel. Click on the link below to view the video.
FORUM VIDEO
https://www.youtube.com/watch?v=pGpK-UeEhzs This MPN Voice online patients’ forum was hosted by Dr Nauman Butt and Dr Rachel
Mazcd
MPNVoice
in
MPN Voice
3 years ago
Stubborn platelets
I have been taking 45 mps interferon for Et for 3 months and my platelet count has started to rise haemo wants to increase this to 90 not too happy as I am struggling with mood swings, itching, no libedo. Does any one take 60 mls?
I have been taking 45 mps interferon for Et for 3 months and my platelet count has started to rise haemo wants to increase this to 90 not too happy as I am struggling with mood swings, itching, no libedo. Does any one take 60 mls?
ciye
in
MPN Voice
3 years ago
Flu shot while taking Pegasus interferon?
Is it OK to have flu shot while taking Pegasus? I had 2 covid shot of Pfizer. Thanks
Is it OK to have flu shot while taking Pegasus? I had 2 covid shot of Pfizer. Thanks
Sam2022
in
MPN Voice
3 years ago
Peg interferon (cold) transportable storage
Hi Please could anyone advise me on the most efficient way to transport your peg interferon while travelling,to keep it cold. Thankyou
Hi Please could anyone advise me on the most efficient way to transport your peg interferon while travelling,to keep it cold. Thankyou
Bobadog
in
MPN Voice
3 years ago
Jack 2 medicine?
Hello. Diagnosis with p. V for 5years. Take peg interferon. My hematologist told there are several research to find medicine for the jak2. Is any one no something about it or send me to studies on the subject. Thank you
Hello. Diagnosis with p. V for 5years. Take peg interferon. My hematologist told there are several research to find medicine for the jak2. Is any one no something about it or send me to studies on the subject. Thank you
eladhil
in
MPN Voice
3 years ago
Peg Interferon and flu jab
Hi All, I was offered the flu jab this year and decided I wanted to have it. However, now I’m wondering whether it’s ok to get it with Interferon. The leaflet of Interferon states that live vaccinations should not be given with the medication and I believe the flu vaccine isn’t live? I haven’t had any
Hi All, I was offered the flu jab this year and decided I wanted to have it. However, now I’m wondering whether it’s ok to get it with Interferon. The leaflet of Interferon states that live vaccinations should not be given with the medication and I believe the flu vaccine isn’t live? I haven’t had any
Nay123
in
MPN Voice
3 years ago
Any Experience with Pegasys and Wound Healing? UPDATED BELOW
Hello to all you good people, I am a 68 year old male diagnosed with p-vera almost a year ago. I had a series of phlebotomies and have been taking pegasys for almost 6 months (present dose 90 pcg). A month ago I saw a dermatologist who found a melanoma on my left calf. Two weeks ago I had surgery to
Hello to all you good people, I am a 68 year old male diagnosed with p-vera almost a year ago. I had a series of phlebotomies and have been taking pegasys for almost 6 months (present dose 90 pcg). A month ago I saw a dermatologist who found a melanoma on my left calf. Two weeks ago I had surgery to
gvibes
in
MPN Voice
3 years ago
ADT having no measurable effect on severity of COVID-19 in men with APC. Neither Better nor Worse.
Influence of androgen deprivation therapy on the severity of COVID-19 in prostate cancer patients https://onlinelibrary.wiley.com/doi/10.1002/pros.24232 TAKE-HOME MESSAGE This is a retrospective analysis of the effects of androgen deprivation therapy (ADT) on COVID-19 disease severity in patients with
Influence of androgen deprivation therapy on the severity of COVID-19 in prostate cancer patients https://onlinelibrary.wiley.com/doi/10.1002/pros.24232 TAKE-HOME MESSAGE This is a retrospective analysis of the effects of androgen deprivation therapy (ADT) on COVID-19 disease severity in patients with
MateoBeach
in
Advanced Prostate Cancer
3 years ago
Sleeplessness
Struggling to sleep on interferon, also really rough dry skin. On 45 been taking it for 9 weeks. Shattered !!!
Struggling to sleep on interferon, also really rough dry skin. On 45 been taking it for 9 weeks. Shattered !!!
ciye
in
MPN Voice
3 years ago
T-cell /Cellular Immune Responses in Patients with CLL from the Pfizer-BioNTech COVID-19 Vaccine (BNT162b mRNA Covid19 Vaccine)
From Dr Tamar Tadmor, Head of the Israeli CLL study group at iwCLL. Patients with CLL suffer from varying degrees of immune deficiency, either due to their treatment or due to the the primary disease These include: 1. functional defects of B and T lymphocytes, NK cells, neutrophils and macrophages, 2
From Dr Tamar Tadmor, Head of the Israeli CLL study group at iwCLL. Patients with CLL suffer from varying degrees of immune deficiency, either due to their treatment or due to the the primary disease These include: 1. functional defects of B and T lymphocytes, NK cells, neutrophils and macrophages, 2
Jm954
Administrator
in
CLL Support
3 years ago
Extremely worried about the value of IL-6 and IL-8 explored, what should I do?
I'm 34 years old only, and have been in MF3 since 2017 diagnosed. Very bad state I was megalosplenia when I diagnosed. Now I take Ruxolitinib 7.5mg/bid /day and interferon per several days. The hemogram was controlled lower than normal, especially platelet. I have taken Ruxolitinib for 3 years, obviously
I'm 34 years old only, and have been in MF3 since 2017 diagnosed. Very bad state I was megalosplenia when I diagnosed. Now I take Ruxolitinib 7.5mg/bid /day and interferon per several days. The hemogram was controlled lower than normal, especially platelet. I have taken Ruxolitinib for 3 years, obviously
merlisa
in
MPN Voice
3 years ago
Monday Dessert: Pandan Jelly in Coconut Milk. 🌱😋❤️🌺
Hello everyone, hope you have a great start of the week! 🤗 Yesterday I visited my parents and they gave me some pandan leaves from their friend’s garden, so I just made pandan jelly dessert. It is served hot or cold. 😋👍 Recipe: Boil pandan leaves in water and add vegan agar powder to make jelly.
Hello everyone, hope you have a great start of the week! 🤗 Yesterday I visited my parents and they gave me some pandan leaves from their friend’s garden, so I just made pandan jelly dessert. It is served hot or cold. 😋👍 Recipe: Boil pandan leaves in water and add vegan agar powder to make jelly.
Hidden
Star
in
Vegan Foods for Life
3 years ago
Switched from Hydroxyurea to Pegylated Interferon (PEGASYS)
Hi, I'm wanting to hear from people who have changed treatments. I'm especially keen to know what doses you were taking of HU and what doses of PI. I have polycythemia vera with JAK2 variant. I was diagnosed sometime ago. Maybe 7 years. Have had various treatments including venesection, interferon alpha
Hi, I'm wanting to hear from people who have changed treatments. I'm especially keen to know what doses you were taking of HU and what doses of PI. I have polycythemia vera with JAK2 variant. I was diagnosed sometime ago. Maybe 7 years. Have had various treatments including venesection, interferon alpha
SuzanneMPD
in
MPN Voice
3 years ago
MPN Awareness Day, September 9, 2021 - A special story
(One day early :) Today is MPN Awareness Day. A time to spread awareness. Hope, inspiration and passion in living are just a few of our allies. In honor of our community, I want to re-share (Sept. 2019) a very inspiring story from Leona, who subscribed to the PV Reporter newsletter back in 2013 and remains
(One day early :) Today is MPN Awareness Day. A time to spread awareness. Hope, inspiration and passion in living are just a few of our allies. In honor of our community, I want to re-share (Sept. 2019) a very inspiring story from Leona, who subscribed to the PV Reporter newsletter back in 2013 and remains
PVReporter
in
MPN Voice
3 years ago
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