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Are you a CLL patient who is unsure of why you are on watch and wait?
Webinar: 3.30pm 12th April
Registration
: Understanding active monitoring ('watch and wait') in CLL https://us02web.zoom.us/webinar/register/WN_FVQdc25bR5Sbr3waCLL1eA The overall aim of this webinar is to support CLL patients to be better able to live well with active monitoring also known
Webinar: 3.30pm 12th April
Registration
: Understanding active monitoring ('watch and wait') in CLL https://us02web.zoom.us/webinar/register/WN_FVQdc25bR5Sbr3waCLL1eA The overall aim of this webinar is to support CLL patients to be better able to live well with active monitoring also known
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
2 years ago
Clinical Trail Updates for Patients
This is a different webinar that the one by Dr. Mesa on March 30. From our friends at MPN Advocacy & Education International Tuesday, March 29, 2022, 11:30 am- 1:00 pm EST Clinical Trial Updates for Patients If you or a loved one have myelofibrosis, polycythemia vera, or essential thrombocythemia
This is a different webinar that the one by Dr. Mesa on March 30. From our friends at MPN Advocacy & Education International Tuesday, March 29, 2022, 11:30 am- 1:00 pm EST Clinical Trial Updates for Patients If you or a loved one have myelofibrosis, polycythemia vera, or essential thrombocythemia
hunter5582
in
MPN Voice
2 years ago
By 5 years, about 14% of patients have undetectable JAK2 mutations.
« Now with this interferon tolerance improved, your abilities improve, response is excellent, and there is a potential for more. I highlighted in my presentation a molecular response. Molecular response is where you are decreasing the JAK2allele burden. That's the percent of cells in a sample of the
« Now with this interferon tolerance improved, your abilities improve, response is excellent, and there is a potential for more. I highlighted in my presentation a molecular response. Molecular response is where you are decreasing the JAK2allele burden. That's the percent of cells in a sample of the
Manouche
in
MPN Voice
2 years ago
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CoQ10 dosage and when to take ?
I have CLL and my hematologist approved CoQ10. CoQ10 is recommended in Mayo litererature, for those with no counter-indications. But I lack good information about how many mg CoQ10 that I could ingest daily, and when to take the cap or caps . Thus, I would appreciate guidance. Also suggestions
I have CLL and my hematologist approved CoQ10. CoQ10 is recommended in Mayo litererature, for those with no counter-indications. But I lack good information about how many mg CoQ10 that I could ingest daily, and when to take the cap or caps . Thus, I would appreciate guidance. Also suggestions
janvog
in
CLL Support
2 years ago
Webinar re. MPN Clinical Trials as an Option
Should you consider an MPN clinical trial? In this webinar, Dr. Ruben Mesa will provide an overview of clinical trials—including the phases—and define common trial terms and types. Dr. Mesa will also share advice for trial participation and give an update on the latest advances in MPN research. Dr
Should you consider an MPN clinical trial? In this webinar, Dr. Ruben Mesa will provide an overview of clinical trials—including the phases—and define common trial terms and types. Dr. Mesa will also share advice for trial participation and give an update on the latest advances in MPN research. Dr
hunter5582
in
MPN Voice
2 years ago
Cellular and humoral immune response to SARS-CoV-2 mRNA vaccines in patients treated with either Ibrutinib or Rituximab
For more than a year we have been reminding each other that even if we don't produce antibodies in response to covid vaccination, we may still produce a cellular response, that is a response that puts our T-cells on guard to fight a covid infection. The study cited below provides data to back up
For more than a year we have been reminding each other that even if we don't produce antibodies in response to covid vaccination, we may still produce a cellular response, that is a response that puts our T-cells on guard to fight a covid infection. The study cited below provides data to back up
gardening-girl
in
CLL Support
2 years ago
Is ET a Cancer
Good Day! To all .. My name is Ryna, from Singapore . I need some information with regards to Essential Thrombocytosis. 1/3/2022 : I was diagnosed with ET . Platelet Count : 548 , JAK2 positive . My hematologies did not prescribe me with any medication as she told me I don’t need any medication
Good Day! To all .. My name is Ryna, from Singapore . I need some information with regards to Essential Thrombocytosis. 1/3/2022 : I was diagnosed with ET . Platelet Count : 548 , JAK2 positive . My hematologies did not prescribe me with any medication as she told me I don’t need any medication
Ryna-Ally
in
MPN Voice
2 years ago
Evusheld shots - What now?
I just had the two Evusheld shots this week. I had CLL for several years and last November completed a 15 month clinical trial (041702) with Ibrutinib, Obinituzumab and Venetoclax. Happily, at the end I was declared uMRD. I have had 3 Pfizer shots and then a Moderna a month ago. None of these generated
I just had the two Evusheld shots this week. I had CLL for several years and last November completed a 15 month clinical trial (041702) with Ibrutinib, Obinituzumab and Venetoclax. Happily, at the end I was declared uMRD. I have had 3 Pfizer shots and then a Moderna a month ago. None of these generated
Iupiter
in
CLL Support
2 years ago
Unusual results on standard differential -- would love feedback (and, if possible, reassurance?)
Hey, all, yesterday I was a bit shaken by results that were, for me, unusual, coinciding with the most clipped doctor visit ever had, so left full of unanswered questions. My lymphs had gone quite up (okay, that's CLL progressing) and WBD went well up too (okay, CLL progressing) BUT, neutrophils, which
Hey, all, yesterday I was a bit shaken by results that were, for me, unusual, coinciding with the most clipped doctor visit ever had, so left full of unanswered questions. My lymphs had gone quite up (okay, that's CLL progressing) and WBD went well up too (okay, CLL progressing) BUT, neutrophils, which
Vlaminck
in
CLL Support
2 years ago
MPN Progression Webinar
Hunter very helpfully posted the recording of this webinar https://healthunlocked.com/mpnvoice/posts/147644509/mpn-progression-webinar-recording Much is familiar to us. Here are some high lights. It's long so seems worth a new post. My notes are sort of fragmented. Most comments here are from Dr
Hunter very helpfully posted the recording of this webinar https://healthunlocked.com/mpnvoice/posts/147644509/mpn-progression-webinar-recording Much is familiar to us. Here are some high lights. It's long so seems worth a new post. My notes are sort of fragmented. Most comments here are from Dr
EPguy
in
MPN Voice
2 years ago
LLS Dr. Greenberger and Dr. Saltzman update on COVID-19 pandemic, the LLS Antibody Research Study, patients responses to the COVID vaccines
Protecting Patients: COVID and Vaccine Updates to the (USA) LLS Ciitizen Study https://www.ciitizen.com/lls/?utm_source=LLS&utm_medium=Partner%20Marketing&utm_campaign - Join us as we speak to Dr. Lee Greenberger, the Chief Scientific Officer of The Leukemia & Lymphoma Society, and Dr. Larry Saltzman
Protecting Patients: COVID and Vaccine Updates to the (USA) LLS Ciitizen Study https://www.ciitizen.com/lls/?utm_source=LLS&utm_medium=Partner%20Marketing&utm_campaign - Join us as we speak to Dr. Lee Greenberger, the Chief Scientific Officer of The Leukemia & Lymphoma Society, and Dr. Larry Saltzman
lankisterguy
Volunteer
in
CLL Support
2 years ago
New Dana Farber Research
This is a link to the article: https://blog.dana-farber.org/insight/2022/01/anti-microbial-drug-targets-key-driver-of-chronic-
lymphocytic
-
leukemia
/?utm_source=newsletter&utm_medium=email&utm_content=Read%20Now&utm_campaign=spotlight Carl
This is a link to the article: https://blog.dana-farber.org/insight/2022/01/anti-microbial-drug-targets-key-driver-of-chronic-
lymphocytic
-
leukemia
/?utm_source=newsletter&utm_medium=email&utm_content=Read%20Now&utm_campaign=spotlight Carl
wizzard166
in
CLL Support
2 years ago
JAKAFI not working
Dr changed my med from HU (2000mg) to Jakafi (15mg) 2 months ago, but the blood test result worsening. Hb, white blood, Hct etc. keep up. Even platelets up from 600 to 1.198. Does anyone have same experienced...? What do you do..? Please advise. Thanks
Dr changed my med from HU (2000mg) to Jakafi (15mg) 2 months ago, but the blood test result worsening. Hb, white blood, Hct etc. keep up. Even platelets up from 600 to 1.198. Does anyone have same experienced...? What do you do..? Please advise. Thanks
william-Indo
in
MPN Voice
2 years ago
"Becoming Your Own (CLL)Project Manager" by Doreen Zetterlund is part of CLL Society & Huntsman Cancer Institute's Monday Nov. 8th CLL Forum
Doreen's presentation is part of Huntsman Cancer Institute's (HCI) 5th Annual Patient & Caregiver Ed Forum presented in partnership with CLL Society and focused on chronic
lymphocytic
leukemia
(CLL). Dr.
Doreen's presentation is part of Huntsman Cancer Institute's (HCI) 5th Annual Patient & Caregiver Ed Forum presented in partnership with CLL Society and focused on chronic
lymphocytic
leukemia
(CLL). Dr.
bkoffman
CLL CURE Hero
in
CLL Support
3 years ago
10 Years With CLL: Two Trials & Lifesaving CAR T-Cell Therapy
And I think you probably, of anybody I know, you've gone down the windy road of chronic
lymphocytic
leukemia
for so long. Let's see, starting in what year? 2011. Deborah Sims: Yeah, I'm coming up to my 10 years now. Andrew Schorr: Oh my.
And I think you probably, of anybody I know, you've gone down the windy road of chronic
lymphocytic
leukemia
for so long. Let's see, starting in what year? 2011. Deborah Sims: Yeah, I'm coming up to my 10 years now. Andrew Schorr: Oh my.
lankisterguy
Volunteer
in
CLL Support
2 years ago
Revolution of Chronic Lymphocytic LeukemiaTherapy: the Chemo-Free Treatment Paradigm
leukemia
(CLL).
leukemia
(CLL).
Tupelomojo
in
CLL Support
3 years ago
To remove my port or not?
Hello, I am a 66 year old male, CLL for about 10 years, was in W &W until Feb, 2021, then completed 6 months treatment with Bendamustine and Rituximab in July 2021, two follow up appts. since then both went well with MRD at 0.07%. I had a Infusaport (port) placed for my treatment. My question is for
Hello, I am a 66 year old male, CLL for about 10 years, was in W &W until Feb, 2021, then completed 6 months treatment with Bendamustine and Rituximab in July 2021, two follow up appts. since then both went well with MRD at 0.07%. I had a Infusaport (port) placed for my treatment. My question is for
napa
in
CLL Support
2 years ago
New User Name (EPguy) and MPN as a Continuum
I'm starting my Besremi journey as in a recent post. I realize that my user name may have been a distraction, since quite reasonably it suggested I have a Dx of ET. In fact my Dx is PV, by both my first Hem and my present MPN specialist. I do have some features of each as I've discussed before.
I'm starting my Besremi journey as in a recent post. I realize that my user name may have been a distraction, since quite reasonably it suggested I have a Dx of ET. In fact my Dx is PV, by both my first Hem and my present MPN specialist. I do have some features of each as I've discussed before.
EPguy
in
MPN Voice
2 years ago
COVID-19 UPDATES - The latest experimental therapies - not CLL specific, but potential treatment for COVID-19 in many cancer patients
COVID-19 UPDATES Dr. Leyfman Discusses the Increased Risk of COVID-19 and Cancer Patients In our third and final interview with , experimental therapies for COVID-19 are discussed. While not CLL specific, Dr. Leyfman does present potential options for treating COVID-19 in cancer patients broadly.
COVID-19 UPDATES Dr. Leyfman Discusses the Increased Risk of COVID-19 and Cancer Patients In our third and final interview with , experimental therapies for COVID-19 are discussed. While not CLL specific, Dr. Leyfman does present potential options for treating COVID-19 in cancer patients broadly.
lankisterguy
Volunteer
in
CLL Support
2 years ago
Ruxolitinib and weight gain
Hello all I have been on ruxolitinib for a year and hydroxy for 5 years. I had lost weight as I now also gave cll. I was very pleased to be feeling better, bloods behaving themselves and have gained the 1/2 stone I had lost. But now I have gained another 1/2 stone. I went out to an event, I kept distanced
Hello all I have been on ruxolitinib for a year and hydroxy for 5 years. I had lost weight as I now also gave cll. I was very pleased to be feeling better, bloods behaving themselves and have gained the 1/2 stone I had lost. But now I have gained another 1/2 stone. I went out to an event, I kept distanced
Mal42
in
MPN Voice
2 years ago
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