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Captivate Trial MRD status
I've been part of the CAPTIVATE trial since 2018. My treatment ended in May 2019....Ibrutinib for 12 months and Venetoclax for 9. I just received several test results including Flow Citometry and I am still MRD negative after 2 years. This trial was simply awesome and a life saver. I was originally
I've been part of the CAPTIVATE trial since 2018. My treatment ended in May 2019....Ibrutinib for 12 months and Venetoclax for 9. I just received several test results including Flow Citometry and I am still MRD negative after 2 years. This trial was simply awesome and a life saver. I was originally
lamboman
in
CLL Support
3 years ago
A CLL Patient Story Sprinkled with Shakespeare!
A Patient Story Sprinkled with Shakespeare! Doreen Zetterlund, an actress, long-time CLL patient advocate, and member of a CLL Society Support Group, inspires us with her strategy to frontload her CLL knowledge to be certain that she will be well informed as to her best possible care, regardless of how
A Patient Story Sprinkled with Shakespeare! Doreen Zetterlund, an actress, long-time CLL patient advocate, and member of a CLL Society Support Group, inspires us with her strategy to frontload her CLL knowledge to be certain that she will be well informed as to her best possible care, regardless of how
bkoffman
CLL CURE Hero
in
CLL Support
3 years ago
Probiotics, MF and Ruxolitinib
Just something that came up while I was chatting briefly to my haematology nurse. I asked her if taking probiotics was a good idea for me, fully expecting her to say yes. However, it was a definite no, because my gut bacteria will not be the normal mixture. We didn't continue the conversation as she
Just something that came up while I was chatting briefly to my haematology nurse. I asked her if taking probiotics was a good idea for me, fully expecting her to say yes. However, it was a definite no, because my gut bacteria will not be the normal mixture. We didn't continue the conversation as she
Otterfield
in
MPN Voice
3 years ago
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Weight gain with ruxolitinib
Hi can anyone help please? I've been on ruxolitinib since November and my weight is creeping up. I have always eaten well and exercise alot but this change is getting me down. If anyone has any advice I'd really appreciate it, thanks all x
Hi can anyone help please? I've been on ruxolitinib since November and my weight is creeping up. I have always eaten well and exercise alot but this change is getting me down. If anyone has any advice I'd really appreciate it, thanks all x
soomoo
in
MPN Voice
3 years ago
Is humira safe to take? Re potential lymphoma and leukemia?
Hi all. I am very new to this platform but so grateful to have a place to ask some difficult questions to people who may understand. I have just started humira after reacting badly to mabthera. I have also previously been on methotrexate, azaoress, nivaquin abd high dose steroids to name a few. I have
Hi all. I am very new to this platform but so grateful to have a place to ask some difficult questions to people who may understand. I have just started humira after reacting badly to mabthera. I have also previously been on methotrexate, azaoress, nivaquin abd high dose steroids to name a few. I have
lee2021
in
LUPUS UK
3 years ago
Treatment and ocular lymphocytic leukemia
My diagnosis in 2017Trisomy12 unmutated 500000 wbc 397 absolute lymphocite Count 6.1 hemoglobin I joined a threefold trial Ibrutinib, Obinutuzumab and Venetoclax. When I had uveitis on both eyes I felt it was temporarily but treatment was necessary. I didnt know then that there is ocular CLL and that
My diagnosis in 2017Trisomy12 unmutated 500000 wbc 397 absolute lymphocite Count 6.1 hemoglobin I joined a threefold trial Ibrutinib, Obinutuzumab and Venetoclax. When I had uveitis on both eyes I felt it was temporarily but treatment was necessary. I didnt know then that there is ocular CLL and that
mickimauser11
in
CLL Support
3 years ago
Should you be minimizing your consumption of lipids?
For the scientific basis for minimizing lipids when you have CLL, see the following study: https://ashpublications.org/blood/article/132/Supplement%201/3117/263679/Chronic-Lymphocytic-
Leukaemia
-Relies-on-Lipid
For the scientific basis for minimizing lipids when you have CLL, see the following study: https://ashpublications.org/blood/article/132/Supplement%201/3117/263679/Chronic-Lymphocytic-
Leukaemia
-Relies-on-Lipid
HowardR
in
CLL Support
3 years ago
Development of the world's first digital model of a cancer cell
The computer model, developed under the lead management of researchers at TU Graz, simulates the cyclical changes in the membrane potential of a cancer cell using the example of human lung adenocarcinoma and opens up completely new avenues in cancer research. Computer models have been standard tools
The computer model, developed under the lead management of researchers at TU Graz, simulates the cyclical changes in the membrane potential of a cancer cell using the example of human lung adenocarcinoma and opens up completely new avenues in cancer research. Computer models have been standard tools
2greys
in
Lung Conditions Community Forum
3 years ago
Looking for alternatives with BTK C481 resistant CLL
Looking for alternatives. I have had 3 prior treatments from FCR to other chemo to Veneclax and Imbrutnib which was working great until my counts went up again. Turns out I have developed a BTK mutation. Been seeking out trials and wanted to try loxo-305 (Pirtobrutinib) but it was all filled up and they
Looking for alternatives. I have had 3 prior treatments from FCR to other chemo to Veneclax and Imbrutnib which was working great until my counts went up again. Turns out I have developed a BTK mutation. Been seeking out trials and wanted to try loxo-305 (Pirtobrutinib) but it was all filled up and they
micg
in
CLL Support
3 years ago
Confusion over vaccine efficacy for MPNS
I recognise that there is a huge difference between people with an MPN and those with
leukaemia
(for example). However, Blood Cancer UK have included MPNS as people who are likely to be in danger from COVID19 even after being fully vaccinated.
I recognise that there is a huge difference between people with an MPN and those with
leukaemia
(for example). However, Blood Cancer UK have included MPNS as people who are likely to be in danger from COVID19 even after being fully vaccinated.
amarylis
in
MPN Voice
3 years ago
The Leukemia & Lymphoma Society’s National Patient Registry COVID-19 vaccination antibody results - published today (Greenberg et al)
As a valued member of The Leukemia & Lymphoma Society’s National Patient Registry, a project of the Michael J. Garil Patient Data Collective, we wanted you to be among the first to know about COVID-19 vaccination antibody results we published today (Greenberg et al., 2021). https://i7.t.hubspotemail.net
As a valued member of The Leukemia & Lymphoma Society’s National Patient Registry, a project of the Michael J. Garil Patient Data Collective, we wanted you to be among the first to know about COVID-19 vaccination antibody results we published today (Greenberg et al., 2021). https://i7.t.hubspotemail.net
lankisterguy
Volunteer
in
CLL Support
3 years ago
Scientists identify 160 new drugs that could be repurposed against COVID-19
Cambridge scientists have identified 200 approved drugs predicted to work against COVID-19—of which only 40 are currently being tested in COVID-19 clinical trials. In a study published today in Science Advances, a team led by researchers at the University of Cambridge’s Milner Therapeutics Institute
Cambridge scientists have identified 200 approved drugs predicted to work against COVID-19—of which only 40 are currently being tested in COVID-19 clinical trials. In a study published today in Science Advances, a team led by researchers at the University of Cambridge’s Milner Therapeutics Institute
2greys
in
Lung Conditions Community Forum
3 years ago
Hyaluronic Acid and CLL
I have been using a Revitalift over the counter face serum that is 1.5% Hyaluronic Acid sold as a treatment for wrinkles and aging skin. I seem to remember somewhere that there is a tie to CLL. Does anyone have any info on this? TIA
I have been using a Revitalift over the counter face serum that is 1.5% Hyaluronic Acid sold as a treatment for wrinkles and aging skin. I seem to remember somewhere that there is a tie to CLL. Does anyone have any info on this? TIA
CBME
in
CLL Support
3 years ago
New genetic research for CLL progression
https://www.hull.ac.uk/work-with-us/more/media-centre/news/2021/hull-york-medical-school-identifies-genetic-tendency-in-
leukaemia
-cells
https://www.hull.ac.uk/work-with-us/more/media-centre/news/2021/hull-york-medical-school-identifies-genetic-tendency-in-
leukaemia
-cells
deveritt
in
CLL Support
3 years ago
Last Call - Places available for today's UK CLL treatments update webinar
Once logged in head to
Leukaemia
Care's Facebook page at 3:30pm on 26th April and find the live video (it will be at the top of our feed). Please note, we will not be able to give individual medical advice.
Once logged in head to
Leukaemia
Care's Facebook page at 3:30pm on 26th April and find the live video (it will be at the top of our feed). Please note, we will not be able to give individual medical advice.
HAIRBEAR_UK
Founder Admin
in
CLL Support
3 years ago
What Factors Impact CLL Treatment Options? -- Patient Empowerment Network --Dr. Lyndsey Roeker is a hematologic oncologist at Memorial Sloan
What Factors Impact CLL Treatment Options? May 14, 2021 click to view video https://powerfulpatients.org/2021/05/14/what-factors-impact-cll-treatment-options/ What are the factors that impact chronic lymphocytic leukemia (CLL) treatment options? Dr. Lindsey Roeker notes important considerations that
What Factors Impact CLL Treatment Options? May 14, 2021 click to view video https://powerfulpatients.org/2021/05/14/what-factors-impact-cll-treatment-options/ What are the factors that impact chronic lymphocytic leukemia (CLL) treatment options? Dr. Lindsey Roeker notes important considerations that
lankisterguy
Volunteer
in
CLL Support
3 years ago
UPDATE: WARWICK's ASCT Journey...
Mon Jun 28, 2021 9:18 pm Hello MPNers Since my last post I left hospital but after 10 days 5 days at my parents house till my kids got over sniffles and 5 days at home my liver function deranged significantly again so I was readmitted to Westmead Public Hospital. Today is day 22 of my stay back at hospital
Mon Jun 28, 2021 9:18 pm Hello MPNers Since my last post I left hospital but after 10 days 5 days at my parents house till my kids got over sniffles and 5 days at home my liver function deranged significantly again so I was readmitted to Westmead Public Hospital. Today is day 22 of my stay back at hospital
socrates_8
in
MPN Voice
3 years ago
Nubie
Hello, I am new to this site. Although I was diagnosed with CLL 20 years ago. Currently receiving immunoglobulin infusions monthly
Hello, I am new to this site. Although I was diagnosed with CLL 20 years ago. Currently receiving immunoglobulin infusions monthly
Mother1943
in
CLL Support
3 years ago
Frontline Ibrutinib/Venetoclax Elicits Durable Responses in CLL With Undetectable MRD
[i]
Fixed-duration ibrutinib plus venetoclax produced superior progression-free survival when compared with chlorambucil plus obinutuzumab in the frontline treatment of patients with chronic lymphocytic leukemia, with durable responses observed in those who achieved undetectable minimal residual
[i]
Fixed-duration ibrutinib plus venetoclax produced superior progression-free survival when compared with chlorambucil plus obinutuzumab in the frontline treatment of patients with chronic lymphocytic leukemia, with durable responses observed in those who achieved undetectable minimal residual
lankisterguy
Volunteer
in
CLL Support
3 years ago
Long-Term Data Showcase the Clinical Utility of Fixed-Duration Venetoclax/Obinutuzumab in Treatment-Naïve CLL
[i]
Fixed-duration venetoclax plus obinutuzumab demonstrated prolonged remissions compared with chemoimmunotherapy in elderly patients with previously untreated chronic lymphocytic leukemia and comorbidities.
presented by Othman Al-Sawaf, MD reported July 6, 2021 by Jessica Hergert https
[i]
Fixed-duration venetoclax plus obinutuzumab demonstrated prolonged remissions compared with chemoimmunotherapy in elderly patients with previously untreated chronic lymphocytic leukemia and comorbidities.
presented by Othman Al-Sawaf, MD reported July 6, 2021 by Jessica Hergert https
lankisterguy
Volunteer
in
CLL Support
3 years ago
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