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Webinar - 3.30pm 17th December - Making the best of your CLL medical appointments
This webinar will focus on how CLL patients can get the most out of their medical appointments, regardless of purpose, format and at whatever stage of your pathway. You can join us and register here: https://us02web.zoom.us/webinar/register/WN_5vLIQeuNQSi2os7pGy1VtQ The aims of the webinar are: · To
This webinar will focus on how CLL patients can get the most out of their medical appointments, regardless of purpose, format and at whatever stage of your pathway. You can join us and register here: https://us02web.zoom.us/webinar/register/WN_5vLIQeuNQSi2os7pGy1VtQ The aims of the webinar are: · To
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Webinar - 3.30pm 10th December - End of life care for leukaemia
Hi all this a delicate and very important topic. We all work together here with hope and information to help each other cope when with living with Leukaemia. One day that may change and we may require different information to prepare should treatment no longer be appropriate and options run out. This
Hi all this a delicate and very important topic. We all work together here with hope and information to help each other cope when with living with Leukaemia. One day that may change and we may require different information to prepare should treatment no longer be appropriate and options run out. This
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Support for CLL Patients
This HU site, where we share information, experiences and friendship is a massive support for many and with Christmas approaching and many of us shielding to a greater or lesser extent, I thought it might be a good time to look at other support available for CLL patients and caregivers. In the UK, [
This HU site, where we share information, experiences and friendship is a massive support for many and with Christmas approaching and many of us shielding to a greater or lesser extent, I thought it might be a good time to look at other support available for CLL patients and caregivers. In the UK, [
Jm954
Administrator
in
CLL Support
3 years ago
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Massage with Cll?
This could be a dumb question but do massages negatively impact people with Cll? Thoughts?
This could be a dumb question but do massages negatively impact people with Cll? Thoughts?
Koda1234
in
CLL Support
3 years ago
Dr. Koffman’s ASH 2021 Day 4 Highlights
Dr. Koffman’s ASH 2021 Day 4 Highlights: In this year’s Day 4 wrap-up, Dr. Koffman keeps us in touch with what currently stands front and center in the world of CLL-relevant clinical trials. His overview touches on combinations of novel agents, innovative treatment strategies, MRD status to guide therapy
Dr. Koffman’s ASH 2021 Day 4 Highlights: In this year’s Day 4 wrap-up, Dr. Koffman keeps us in touch with what currently stands front and center in the world of CLL-relevant clinical trials. His overview touches on combinations of novel agents, innovative treatment strategies, MRD status to guide therapy
bkoffman
CLL CURE Hero
in
CLL Support
3 years ago
Melatonin and CLL
I ran across this article - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6057911/ a bit technical but further down it talks about apoptosis of leukemia cells. Does anyone have any input on taking Melatonin - I am taking 10mg at night to help with sleep. Just a curious question. I am on W&W two years
I ran across this article - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6057911/ a bit technical but further down it talks about apoptosis of leukemia cells. Does anyone have any input on taking Melatonin - I am taking 10mg at night to help with sleep. Just a curious question. I am on W&W two years
CBME
in
CLL Support
3 years ago
UK Webinar this Friday - 3.30pm GMT 17th December - Making the best of your CLL medical appointments
Hi friends a reminder - You may find this Leukaemia Care webinar of interest. The webinar will focus on how CLL patients can get the most out of their medical appointments, regardless of purpose, format and at whatever stage of your pathway. You can join us and the discussion by registering here:
Hi friends a reminder - You may find this Leukaemia Care webinar of interest. The webinar will focus on how CLL patients can get the most out of their medical appointments, regardless of purpose, format and at whatever stage of your pathway. You can join us and the discussion by registering here:
HAIRBEAR_UK
Founder Admin
in
CLL Support
3 years ago
CLL Society ASH 2021 Highlights from Day 2 of ASH 2021! Dr. Brian Koffman gives up updates
ASH 2021 Highlights from Day 2 of ASH 2021! Dr. Brian Koffman gives up updates on the reversible non-covalently binding BTKi (Bruton’s tyrosine kinase inhibitor) pirtobrutinib (formerly LOXO-305), another reversable BTKi known as MK-1026 (formerly ARQ-531), 3-year follow-up data from the Ascend Trial
ASH 2021 Highlights from Day 2 of ASH 2021! Dr. Brian Koffman gives up updates on the reversible non-covalently binding BTKi (Bruton’s tyrosine kinase inhibitor) pirtobrutinib (formerly LOXO-305), another reversable BTKi known as MK-1026 (formerly ARQ-531), 3-year follow-up data from the Ascend Trial
bkoffman
CLL CURE Hero
in
CLL Support
3 years ago
Biotin as a boost for hair thinninh
I have been told Biotin is good for thinning hair.does anyone know of any reason it may affect my blood test results.I am on weekly 90mg peginterferon?
I have been told Biotin is good for thinning hair.does anyone know of any reason it may affect my blood test results.I am on weekly 90mg peginterferon?
caroline_284
in
MPN Voice
3 years ago
LLS Ciitizen: Emerging Research on COVID-19 and Blood Cancer on Thursday, September 30 at 1:00PM ET. UPDATE Research Now webinar,
Kay, MD (Mayo Clinic): An expert on chronic
lymphocytic
leukemia
(CLL), the most common and still incurable leukemia, Dr. Kay is studying immunologic response to COVID infection.
Kay, MD (Mayo Clinic): An expert on chronic
lymphocytic
leukemia
(CLL), the most common and still incurable leukemia, Dr. Kay is studying immunologic response to COVID infection.
lankisterguy
Volunteer
in
CLL Support
3 years ago
Information on Acute Myeloid Leukaemia
After PV for many years , Myelofibrosis for two years , I now have AML. On Ruxolitinib and EPO injections I’m having panic attacks, it seems no treatment is available apart from transfusions. Is anybody else in a similar situation, and how are you managing.
After PV for many years , Myelofibrosis for two years , I now have AML. On Ruxolitinib and EPO injections I’m having panic attacks, it seems no treatment is available apart from transfusions. Is anybody else in a similar situation, and how are you managing.
Mysi
in
MPN Voice
3 years ago
Antibody test update. Good News!
I have just received my result for the Covid Cancer Antibody Survey which I posted about last week. I am very pleased to say I have antibodies. It doesn’t say in what percentage but I am relieved to know I have some protection as I was sure it would be negative. I was notified by email and text very
I have just received my result for the Covid Cancer Antibody Survey which I posted about last week. I am very pleased to say I have antibodies. It doesn’t say in what percentage but I am relieved to know I have some protection as I was sure it would be negative. I was notified by email and text very
azaelea
in
MPN Voice
3 years ago
Covid & vaccine efficacy for CLL patients
Apologies if this has already been flagged up but people may find this report from the US CLL Society useful https://cllsociety.org/2021/07/ash-2020-dr-lindsey-roeker-on-covid-19-vaccine-efficacy-in-patients-with-chronic-
lymphocytic
-
leukemia
-cll/
Apologies if this has already been flagged up but people may find this report from the US CLL Society useful https://cllsociety.org/2021/07/ash-2020-dr-lindsey-roeker-on-covid-19-vaccine-efficacy-in-patients-with-chronic-
lymphocytic
-
leukemia
-cll/
Ptcad
in
CLL Support
3 years ago
Webinar 3.30pm 12th November - CAR-T therapy update
Today 3.30pm - free spaces available Want to learn more about the current UK status of CAR-T therapy? Join our webinar where our expert panel will explain how the therapy works, what is involved and how it is used to treat leukaemia. You can register here: https://t.co/0C0mu1r3Ds?amp=1 We will be joined
Today 3.30pm - free spaces available Want to learn more about the current UK status of CAR-T therapy? Join our webinar where our expert panel will explain how the therapy works, what is involved and how it is used to treat leukaemia. You can register here: https://t.co/0C0mu1r3Ds?amp=1 We will be joined
HAIRBEAR_UK
in
Leukaemia Support
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
SCT risks
My husband and I are just back from Southampton after another appointment with my SCT specialist. This was the one where he went through all the risks of the procedure, including the statistic that 20% die. Although I knew this already from Prof Harrison, it was difficult to be reminded. He did say that
My husband and I are just back from Southampton after another appointment with my SCT specialist. This was the one where he went through all the risks of the procedure, including the statistic that 20% die. Although I knew this already from Prof Harrison, it was difficult to be reminded. He did say that
Otterfield
in
MPN Voice
3 years ago
Where does CLL apoptosis take place?
After watching the video (Living With Chronic
Lymphocytic
Leukemia
) I’m curious as to where the CLL cells death (apoptosis) takes place? In the blood? In the marrow? In the lymph nodes? In the spleen? All of the above? The part of the video (below*) is what got me thinking about this. “Dr.
After watching the video (Living With Chronic
Lymphocytic
Leukemia
) I’m curious as to where the CLL cells death (apoptosis) takes place? In the blood? In the marrow? In the lymph nodes? In the spleen? All of the above? The part of the video (below*) is what got me thinking about this. “Dr.
Lavinia-Blue
in
CLL Support
3 years ago
Two things. White blood count creeping up. And waiting for results from spike protein test.
I just went for my regular hematologist appointment. My white blood count hovered between 18 and 20. Today it was 23. My doctor isn't worried but is having me come back in 3 months instead of 4. She said not to worry but I see a slight upward trend. Any advice? Also I'm waiting for my results from
I just went for my regular hematologist appointment. My white blood count hovered between 18 and 20. Today it was 23. My doctor isn't worried but is having me come back in 3 months instead of 4. She said not to worry but I see a slight upward trend. Any advice? Also I'm waiting for my results from
elm1
in
CLL Support
3 years ago
UK Webinar - 3.30pm GMT 17th December - Making the best of your CLL medical appointments
Hi friends you may find this Leukaemia Care webinar of interest. The webinar will focus on how CLL patients can get the most out of their medical appointments, regardless of purpose, format and at whatever stage of your pathway. You can join us and the discussion by registering here: https://us02web.zoom.us
Hi friends you may find this Leukaemia Care webinar of interest. The webinar will focus on how CLL patients can get the most out of their medical appointments, regardless of purpose, format and at whatever stage of your pathway. You can join us and the discussion by registering here: https://us02web.zoom.us
HAIRBEAR_UK
Founder Admin
in
CLL Support
3 years ago
Rituxan
Hello everyone. I am 6 years with CLL. My skin issues keep getting worse and my Oncologist has just recommended a 4 week (once per week) infusion of Rituxan. Does anyone have experience with this? Thankful this is a minor issue. Thank you!
Hello everyone. I am 6 years with CLL. My skin issues keep getting worse and my Oncologist has just recommended a 4 week (once per week) infusion of Rituxan. Does anyone have experience with this? Thankful this is a minor issue. Thank you!
mkuhlman
in
CLL Support
3 years ago
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