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An Explosion of Options for MPNs Forthcoming
« The Virtual ASH Meeting was just held in early December. It demonstrated that although we missed the in-person interactions, the progress in the world of hematology was exceptional! Forward progress for Myeloproliferative neoplasms (myelofibrosis (MF), polycythemia vera (PV), and essential thrombocythemia
« The Virtual ASH Meeting was just held in early December. It demonstrated that although we missed the in-person interactions, the progress in the world of hematology was exceptional! Forward progress for Myeloproliferative neoplasms (myelofibrosis (MF), polycythemia vera (PV), and essential thrombocythemia
Manouche
in
MPN Voice
4 years ago
Good end to a bad year... My MRD Results are in!
As many of you know, I enrolled in a clinical trial for experimental treatment with the goal to reduce MRD to zero. (Minimal (or Measurable) residual disease Description:Minimal residual disease is the name given to small numbers of leukaemic cells that remain in the person during treatment, or after
As many of you know, I enrolled in a clinical trial for experimental treatment with the goal to reduce MRD to zero. (Minimal (or Measurable) residual disease Description:Minimal residual disease is the name given to small numbers of leukaemic cells that remain in the person during treatment, or after
MikeHoff
in
CLL Support
4 years ago
RUXOLITINIB & Pulmonary Hypertension (PH)
Post by MPN-MATE Admin » Mon Dec 14, 2020 9:34 am Morning all... :D Lately, or perhaps I should have said, more recently while cycling... I have noticed days when my heart rate really blows out past previous maximums... Some days, I would feel in awesome ability after a ride, but then others, (&
Post by MPN-MATE Admin » Mon Dec 14, 2020 9:34 am Morning all... :D Lately, or perhaps I should have said, more recently while cycling... I have noticed days when my heart rate really blows out past previous maximums... Some days, I would feel in awesome ability after a ride, but then others, (&
socrates_8
in
MPN Voice
4 years ago
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Picture of blast cell
I took this picture from a cat who had leukemia. Their blood cells are identical to ours. As you can see the blast cell is huge compared to the other white blood cells. That is because it is immature and has been released from the bone marrow too soon. Blasts should not be seen circulating in the blood
I took this picture from a cat who had leukemia. Their blood cells are identical to ours. As you can see the blast cell is huge compared to the other white blood cells. That is because it is immature and has been released from the bone marrow too soon. Blasts should not be seen circulating in the blood
clubdino
in
MPN Voice
4 years ago
Pot Belly
Hi Does anyone have a problem with a pot belly. I have found recently that my trousers are tight and I am sure my spleen is not the cause. I have MF on Ruxolitinib 5mg 2 per day, eprex injections once a week and zario 3 times a week.
Hi Does anyone have a problem with a pot belly. I have found recently that my trousers are tight and I am sure my spleen is not the cause. I have MF on Ruxolitinib 5mg 2 per day, eprex injections once a week and zario 3 times a week.
WeeHarry
in
MPN Voice
4 years ago
CLL and Roundup lawsuit
For those living in the U.S. there's a time sensitive deadline—12/31/2020, I think—to initiate a new legal action brewing against the makers of Roundup for people who have, or have had, CLL. Check out this site: https://justicecounts.com/roundup/roundup-settlement-amounts/ Even more importantly, here's
For those living in the U.S. there's a time sensitive deadline—12/31/2020, I think—to initiate a new legal action brewing against the makers of Roundup for people who have, or have had, CLL. Check out this site: https://justicecounts.com/roundup/roundup-settlement-amounts/ Even more importantly, here's
Pogee
in
CLL Support
4 years ago
Webinar - 6pm Tuesday 15th December - "Accessing your GP"
Dear friends please join us for this free webinar Leukaemia Care and Lymphoma Action are hosting this webinar to bring GPs and those affected by blood cancers together to share perspectives of how to make best use of Primary Care services during the current pandemic. Registration: https://us02web.zoom.us
Dear friends please join us for this free webinar Leukaemia Care and Lymphoma Action are hosting this webinar to bring GPs and those affected by blood cancers together to share perspectives of how to make best use of Primary Care services during the current pandemic. Registration: https://us02web.zoom.us
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Living in the USA with CLL and want to know where to sign up for your COVID-19 Vaccination? A State-by-State List
From MedPage Today: [i]Every state has posted information on its plan; many (though not all) list ways to sign up. Here are links to each state's vaccination web page.[/i] https://www.medpagetoday.com/infectiousdisease/covid19/90791 CLL Society's Official Statement:
Should I get the vaccine? Which
From MedPage Today: [i]Every state has posted information on its plan; many (though not all) list ways to sign up. Here are links to each state's vaccination web page.[/i] https://www.medpagetoday.com/infectiousdisease/covid19/90791 CLL Society's Official Statement:
Should I get the vaccine? Which
AussieNeil
Partner
in
CLL Support
3 years ago
AOP Orphan announces 5-year results on BESREMi® in PV at the ASH Annual Meeting 2020
Besremi showed clear advantages in efficacy and safety/tolerability versus best-available-treatment (mostly hydroxyurea) in this long-term treatment analysis in the randomized-controlled setting. * Freedom of phlebotomy with hematocrit below 45% was achieved in 81.8% of patients receiving Besremi vs
Besremi showed clear advantages in efficacy and safety/tolerability versus best-available-treatment (mostly hydroxyurea) in this long-term treatment analysis in the randomized-controlled setting. * Freedom of phlebotomy with hematocrit below 45% was achieved in 81.8% of patients receiving Besremi vs
Manouche
in
MPN Voice
4 years ago
Interferon in Polycythemia Vera (PV) Yields Improved Myelofibrosis-Free and Overall Survival
« Conclusion: Our results support early use of rIFN-a as a safe, disease-modifying treatment of rigorously defined PV to delay and potentially prevent Post PV myelofibrosis, and prolong overall survival of PV pts » https://ash.confex.com/ash/2020/webprogram/Paper141796.html
« Conclusion: Our results support early use of rIFN-a as a safe, disease-modifying treatment of rigorously defined PV to delay and potentially prevent Post PV myelofibrosis, and prolong overall survival of PV pts » https://ash.confex.com/ash/2020/webprogram/Paper141796.html
Manouche
in
MPN Voice
4 years ago
Dr wanting to reduce my pain medication
I suffer with a degenerative disease of my lumbar spine I have been through the pain management system twice. At first I was perscribed 400mg of MST Continus, 12.5ml of Oramorph, codeine, amitripyline, gabapentin which was a very large prescription. After a while I went and on my own fruition I reduced
I suffer with a degenerative disease of my lumbar spine I have been through the pain management system twice. At first I was perscribed 400mg of MST Continus, 12.5ml of Oramorph, codeine, amitripyline, gabapentin which was a very large prescription. After a while I went and on my own fruition I reduced
Daz75
in
Pain Concern
4 years ago
Inconclusive results from BMB
My bone narrow biopsy results were inconclusive. Positive in Jak 2. Negative tests results for lymphoma and leukemia. Red blood cell, white blood cell and platelets are all high. They cannot determine what exact disorder I have. As a result, there has been no recommendation on what to do with medication
My bone narrow biopsy results were inconclusive. Positive in Jak 2. Negative tests results for lymphoma and leukemia. Red blood cell, white blood cell and platelets are all high. They cannot determine what exact disorder I have. As a result, there has been no recommendation on what to do with medication
margaritampn
in
MPN Voice
4 years ago
"It will change everything" - two scientific blockbusters we'll all benefit from
Mainly of interest to geeks, but of import to everyone. Blockbuster # 1: CRISPR-Cas9 Within weeks we expect to have several effective vaccines against the coronavirus, vaccines made from scratch and rushed to market within 12 months. Hitherto, such a development schedule for a new vaccine was unthinkable
Mainly of interest to geeks, but of import to everyone. Blockbuster # 1: CRISPR-Cas9 Within weeks we expect to have several effective vaccines against the coronavirus, vaccines made from scratch and rushed to market within 12 months. Hitherto, such a development schedule for a new vaccine was unthinkable
bennevisplace
in
CLL Support
4 years ago
Is there a link between PV and Alopecia areata (AA)?
Hi, Back in Summer 2019 I was diagnosed with Alopecia areata (AA). Then in Feb 2020 a blood test picked up high red blood cells / haemoglobin and haematocrits. In October just gone I was told I almost certainly have PV despite being negative for JAK2. (I have low EPO too). I see my consultant later
Hi, Back in Summer 2019 I was diagnosed with Alopecia areata (AA). Then in Feb 2020 a blood test picked up high red blood cells / haemoglobin and haematocrits. In October just gone I was told I almost certainly have PV despite being negative for JAK2. (I have low EPO too). I see my consultant later
Lettie_WP
in
MPN Voice
4 years ago
DR wanting to reduce my medication
I suffer with a degenerative disease of my lumbar spine I have been through the pain management system twice. At first I was perscribed 400mg of MST Continus, 12.5ml of Oramorph, codeine, amitripyline, gabapentin which was a very large prescription. After a while I went and on my own fruition I reduced
I suffer with a degenerative disease of my lumbar spine I have been through the pain management system twice. At first I was perscribed 400mg of MST Continus, 12.5ml of Oramorph, codeine, amitripyline, gabapentin which was a very large prescription. After a while I went and on my own fruition I reduced
Daz75
in
Cloudy with a Chance of Pain
4 years ago
My Dr wanting to reduce my pain medication
I suffer with a degenerative disease of my lumbar spine I have been through the pain management system twice. At first I was perscribed 400mg of MST Continus, 12.5ml of Oramorph, codeine, amitripyline, gabapentin which was a very large prescription. After a while I went and on my own fruition I reduced
I suffer with a degenerative disease of my lumbar spine I have been through the pain management system twice. At first I was perscribed 400mg of MST Continus, 12.5ml of Oramorph, codeine, amitripyline, gabapentin which was a very large prescription. After a while I went and on my own fruition I reduced
Daz75
in
Action on Pain
4 years ago
Help deciding about Transplant
I was diagnosed with Primary MF aged 49, 6 years ago. I am well managed on Ruxolitinib 30 mg daily, Aspirin and Acyclovir. My consuhas recently referred me to a transplant construct discuss a possible transplant. I am trying make my decision, which I am finding so difficult. As I am well controlled
I was diagnosed with Primary MF aged 49, 6 years ago. I am well managed on Ruxolitinib 30 mg daily, Aspirin and Acyclovir. My consuhas recently referred me to a transplant construct discuss a possible transplant. I am trying make my decision, which I am finding so difficult. As I am well controlled
Cazbolac
in
MPN Voice
4 years ago
2 Physicians with CLL! Join CLL Society for a CLL Society/ FaceBook Live event Dec. 16 and hear their stories live!
2 Physicians with CLL! Join us for a CLL Society/ Facebook Live Event Wednesday Dec. 16. Watch Dr. Brian Koffman and a fellow physician, both with CLL, share stories of the impact of their diagnosis and the strategies they implemented for increasing their knowledge about CLL and arranging proper care
2 Physicians with CLL! Join us for a CLL Society/ Facebook Live Event Wednesday Dec. 16. Watch Dr. Brian Koffman and a fellow physician, both with CLL, share stories of the impact of their diagnosis and the strategies they implemented for increasing their knowledge about CLL and arranging proper care
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
Best use of time while waiting on FISH panel
Hello all, I just found this group, and am so grateful for this type of resource! My husband (41) of 2 months was diagnosed with cll on Friday. I'm so overwhelmed with the terms and information and I don't know where to begin. He is going in this week for the FISH test. My question is, what can we do
Hello all, I just found this group, and am so grateful for this type of resource! My husband (41) of 2 months was diagnosed with cll on Friday. I'm so overwhelmed with the terms and information and I don't know where to begin. He is going in this week for the FISH test. My question is, what can we do
MrsCc6
in
CLL Support
4 years ago
American Society of Hematology (ASH) 2020 Virtual meeting key updates in the treatment of CLL
The Virtual 62nd Annual American Society of Hematology (ASH) meeting has showcased key updates in the treatment and management of hematological malignancies.
The content of VJHemOnc is intended for healthcare professionals- so these presentations are in "Med-Speak"
Overview of all 20 video
The Virtual 62nd Annual American Society of Hematology (ASH) meeting has showcased key updates in the treatment and management of hematological malignancies.
The content of VJHemOnc is intended for healthcare professionals- so these presentations are in "Med-Speak"
Overview of all 20 video
lankisterguy
Volunteer
in
CLL Support
4 years ago
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