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Published today: COVID-19 UK CLL patient experience survey 3 interim report
We are pleased to share latest results and info graphics of answers to survey 3 in this series of surveys by the collaboration of CLL patients with the UK CLL Forum, CLL Support and Leukaemia Care .. This report also compares noticeable change since survey 2. The first survey was launched on 27th
We are pleased to share latest results and info graphics of answers to survey 3 in this series of surveys by the collaboration of CLL patients with the UK CLL Forum, CLL Support and Leukaemia Care .. This report also compares noticeable change since survey 2. The first survey was launched on 27th
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
How COVID-19 Has Impacted Clinical Trials for Chronic Lymphocytic Leukemia
[i]"Many patients with chronic
lymphocytic
leukemia
(CLL) rely on the outcomes of clinical trials that examine new ways to treat the disease.
[i]"Many patients with chronic
lymphocytic
leukemia
(CLL) rely on the outcomes of clinical trials that examine new ways to treat the disease.
AussieNeil
Partner
in
CLL Support
4 years ago
FDA Accepts Application for Ropeginterferon Alfa-2b for Polycythemia Vera
The FDA has accepted a Biologics License Application (BLA) for ropeginterferon alfa-2b (P1101) for use as a treatment for patients with polycythemia vera (PV) in the absence of symptomatic splenomegaly, according to PharmaEssentia Corporation, the manufacturer of the novel pegylated interferon. https
The FDA has accepted a Biologics License Application (BLA) for ropeginterferon alfa-2b (P1101) for use as a treatment for patients with polycythemia vera (PV) in the absence of symptomatic splenomegaly, according to PharmaEssentia Corporation, the manufacturer of the novel pegylated interferon. https
Manouche
in
MPN Voice
4 years ago
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Richter's transformation???
I posted a related question a few days ago but I am increasingly concerned about a Richter's transformation so altering it a bit to see if anyone can shed more light... Cll diagnosed 2012 Bendamustine/Gazyva 2015 IGg steadily declining, now at 74 September 2019: atypical lymphoid proliferation resulting
I posted a related question a few days ago but I am increasingly concerned about a Richter's transformation so altering it a bit to see if anyone can shed more light... Cll diagnosed 2012 Bendamustine/Gazyva 2015 IGg steadily declining, now at 74 September 2019: atypical lymphoid proliferation resulting
CoCoLuna11
in
CLL Support
4 years ago
UK webinar - CLL treatment a changing landscape
Posted on behalf of HAIRBEAR_UK When: Jun 29, 2020 11:00 AM London We invite you to Join us for an upcoming webinar on chronic lymphocytic leukaemia (CLL) treatment. Register here https://us02web.zoom.us/webinar/register/WN_m2_TU8zlTauJ37YOyD_vGw We will joined by: Professor Anna Schuh, consultant haematologist
Posted on behalf of HAIRBEAR_UK When: Jun 29, 2020 11:00 AM London We invite you to Join us for an upcoming webinar on chronic lymphocytic leukaemia (CLL) treatment. Register here https://us02web.zoom.us/webinar/register/WN_m2_TU8zlTauJ37YOyD_vGw We will joined by: Professor Anna Schuh, consultant haematologist
Jm954
Administrator
in
CLL Support
4 years ago
CLL Medications and Corona Virus
This is the link to the article for any of you interested: https://patientpower.info/chronic-
lymphocytic
-
leukemia
/ask-the-expert/coronavirus-separating-fact-from-fiction-for-cll-patients#read-transcript-anchor When I read other articles written by doctors about this concept of strong immune systems
This is the link to the article for any of you interested: https://patientpower.info/chronic-
lymphocytic
-
leukemia
/ask-the-expert/coronavirus-separating-fact-from-fiction-for-cll-patients#read-transcript-anchor When I read other articles written by doctors about this concept of strong immune systems
wizzard166
in
CLL Support
4 years ago
New to Chronic leukemia
Hi all. I'm new to all this and hoping to connect with ppl that understand what I'm going thru. I lost my right leg to bone lesion, failed bone transplants and osteomyelitis. Doc have always bee looking for in your face cancer cause. Everything with me has been borderline. It's been confusing for all
Hi all. I'm new to all this and hoping to connect with ppl that understand what I'm going thru. I lost my right leg to bone lesion, failed bone transplants and osteomyelitis. Doc have always bee looking for in your face cancer cause. Everything with me has been borderline. It's been confusing for all
Wowo23
in
CLL Support
4 years ago
Atypical lymphoid proliferation - colon, and neck?
Hi, I haven't posted here yet. I was diagnosed with CLL at age 43 in 2012 (13Q, Unmutated) and was treated in 2015 with Bendamustine/Gazyva. I had a routine colonoscopy Fall 2019 and had a 3.7 cm lymphoid infiltrate in colon. I had a terminal ileum and right colon resection and after a long wait on
Hi, I haven't posted here yet. I was diagnosed with CLL at age 43 in 2012 (13Q, Unmutated) and was treated in 2015 with Bendamustine/Gazyva. I had a routine colonoscopy Fall 2019 and had a 3.7 cm lymphoid infiltrate in colon. I had a terminal ileum and right colon resection and after a long wait on
CoCoLuna11
in
CLL Support
4 years ago
Management of CLL Patients Early in the COVID-19 Pandemic: An International Survey of CLL Experts
John Pagel, https://cllsociety.org/2020/05/ash-2019-dr-pagel-discusses-intermittent-dosing-of-the-pi3k-inhibitor-me401-in-chronic-
lymphocytic
-
leukemia
-cll/ we learn that PI3 kinase inhibitors are potent medications that control CLL, but their widespread adoption has been slowed by their potential side
John Pagel, https://cllsociety.org/2020/05/ash-2019-dr-pagel-discusses-intermittent-dosing-of-the-pi3k-inhibitor-me401-in-chronic-
lymphocytic
-
leukemia
-cll/ we learn that PI3 kinase inhibitors are potent medications that control CLL, but their widespread adoption has been slowed by their potential side
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
The Myeloproliferative Neoplasm Landscape: A Patient’s Eye View
Post by MPN-MATE Admin » Sat May 30, 2020 10:24 am Last Post for today before I go for a very fresh cycle ... :D This Post is about an article that has endeavoured to look at MPNs through the /Lens' of the MPN patient. Best wishes Steve
[i]The Myeloproliferative Neoplasm Landscape: A Patient’s
Post by MPN-MATE Admin » Sat May 30, 2020 10:24 am Last Post for today before I go for a very fresh cycle ... :D This Post is about an article that has endeavoured to look at MPNs through the /Lens' of the MPN patient. Best wishes Steve
[i]The Myeloproliferative Neoplasm Landscape: A Patient’s
socrates_8
in
MPN Voice
4 years ago
Ruxolitinib and Covid-19 - Trial
The Times has an article today regarding a trial in London. I remember there was a post here - ? April - saying it was one of the many drugs being looked at, but I certainly hadn't seen anything else since. I imagine those of us who are on it will wonder whether that might already be a benefit to us
The Times has an article today regarding a trial in London. I remember there was a post here - ? April - saying it was one of the many drugs being looked at, but I certainly hadn't seen anything else since. I imagine those of us who are on it will wonder whether that might already be a benefit to us
Hidden
in
MPN Voice
4 years ago
How To Know When You are Getting Old.
I was given a tea towel as a gift which featured the following............ I hope you enjoy reading it as much as I did. Actually many things are very true and I wasn't offended and found it hilarious! Everything hurts! What doesn't hurt doesn't work, The gleam in your eye is the sun shining on your
I was given a tea towel as a gift which featured the following............ I hope you enjoy reading it as much as I did. Actually many things are very true and I wasn't offended and found it hilarious! Everything hurts! What doesn't hurt doesn't work, The gleam in your eye is the sun shining on your
RoadRunner44
in
Lung Conditions Community Forum
4 years ago
CLL virtual town hall THIS Saturday
https://patientpower.info/events/event/chronic-
lymphocytic
-
leukemia
-town-hall-meeting/2020-03-28/0930. Don't miss it! And send your questions to cll@patientpower.info. We are all in this together!
https://patientpower.info/events/event/chronic-
lymphocytic
-
leukemia
-town-hall-meeting/2020-03-28/0930. Don't miss it! And send your questions to cll@patientpower.info. We are all in this together!
andrewschorr
in
CLL Support
4 years ago
Poikilocytosis and Burr cells
I have CLL, the slow moving type since 2013; am 68 yrs old. My blood work is not that much out of the normal range and I feel fine. Had my standard checkup last week with a new oncologist who order a standard CBC plus a couple of other new blood tests; testing for the existance of poikilocytosis cells
I have CLL, the slow moving type since 2013; am 68 yrs old. My blood work is not that much out of the normal range and I feel fine. Had my standard checkup last week with a new oncologist who order a standard CBC plus a couple of other new blood tests; testing for the existance of poikilocytosis cells
markjeep51
in
CLL Support
4 years ago
The Benefits of Exercise with CLL and COVID-19
Exercise and Chronic
Leukemia
(CLL) - Relationships Among Physical Activity, Fitness, & Inflammation, and Their Impacts on CLL Patients https://ashpublications.org/blood/article/132/Supplement%201/5540/263135/Exercise-and-Chronic-
Lymphocytic
-
Leukemia
-CLL High levels of midlife fitness
Exercise and Chronic
Leukemia
(CLL) - Relationships Among Physical Activity, Fitness, & Inflammation, and Their Impacts on CLL Patients https://ashpublications.org/blood/article/132/Supplement%201/5540/263135/Exercise-and-Chronic-
Lymphocytic
-
Leukemia
-CLL High levels of midlife fitness
AussieNeil
Partner
in
CLL Support
4 years ago
Hydroxyurea and Zoloft
Hi everyone, Has anyone experienced using hydroxyurea with Zoloft ? Does it have any interaction? My mom is going through anxiety due to some family problems and I was thinking it would be beneficial for her to start using Zoloft to lower her stress level but I’m not sure if it can have any side effect
Hi everyone, Has anyone experienced using hydroxyurea with Zoloft ? Does it have any interaction? My mom is going through anxiety due to some family problems and I was thinking it would be beneficial for her to start using Zoloft to lower her stress level but I’m not sure if it can have any side effect
Lovelymom4
in
MPN Voice
4 years ago
If you want to learn about CLL text or video
/ http://cllsociety.org/cll-101/ - If you do better with explanatory videos Start here: https://patientpower.info/chronic-
lymphocytic
-
leukemia
/what-is-chronic-
lymphocytic
-
leukemia
/ Patient Power is a for-profit patient education website offers instructive videos and more on many health topics
/ http://cllsociety.org/cll-101/ - If you do better with explanatory videos Start here: https://patientpower.info/chronic-
lymphocytic
-
leukemia
/what-is-chronic-
lymphocytic
-
leukemia
/ Patient Power is a for-profit patient education website offers instructive videos and more on many health topics
lankisterguy
Volunteer
in
CLL Support
4 years ago
Hepcidin Mimetic PTG-300 Shows Early Promise in Polycythemia Vera
"PTG-300 is a big deal, and it is something different," said study investigator, Ronald Hoffman, MD, of The Icahn School of Medicine at Mount Sinai. "It was unanticipated that a regulator of iron metabolism could be used to treat patients with PV. This is the merging of 2 fields: science and hematology
"PTG-300 is a big deal, and it is something different," said study investigator, Ronald Hoffman, MD, of The Icahn School of Medicine at Mount Sinai. "It was unanticipated that a regulator of iron metabolism could be used to treat patients with PV. This is the merging of 2 fields: science and hematology
Manouche
in
MPN Voice
4 years ago
Small Things, Big Difference
Dear all it is a pleasure to share this booklet put together by the CLL community and Abbvie, This may help us all when dealing with the unknown. It’s the small things that make a big difference to the everyday lives of those living with CLL, from those recently diagnosed, to those who have been
Dear all it is a pleasure to share this booklet put together by the CLL community and Abbvie, This may help us all when dealing with the unknown. It’s the small things that make a big difference to the everyday lives of those living with CLL, from those recently diagnosed, to those who have been
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
PV with high MCV,high RDW ,all other parameters normal - what does it mean ?
Was diagnosed with PV in 2019 in February 2019. Was put on Hydroxyurea. Now in February my blood reports are looking much better with all other parameters normal , but however only my MCV (108.7) and MCH (37.5) are higher than before .Also the RDW (14.9) is higher than before. All other blood parameters
Was diagnosed with PV in 2019 in February 2019. Was put on Hydroxyurea. Now in February my blood reports are looking much better with all other parameters normal , but however only my MCV (108.7) and MCH (37.5) are higher than before .Also the RDW (14.9) is higher than before. All other blood parameters
Iwillwin123
in
MPN Voice
4 years ago
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