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CLL and Hyperbaric chamber
Hi Diagnosed in 2013 and on W&W but blood tests not so good and expecting to get some sort of treatment soon. Trying out using Hyperbaric Chamber, will do 20 sessions and then drop to 1 per week as advised so will be interesting to compare blood results before and after. Any body had similar experience
Hi Diagnosed in 2013 and on W&W but blood tests not so good and expecting to get some sort of treatment soon. Trying out using Hyperbaric Chamber, will do 20 sessions and then drop to 1 per week as advised so will be interesting to compare blood results before and after. Any body had similar experience
roblaw
in
CLL Support
3 years ago
Chronic Lymphocytic Leukaemia (CLL) 2020 Australian Study by Centre for Community Driven Research has been published
With thanks to the many members of our community who contributed their time last year to this comprehensive survey of those living with CLL and their carers, the CLL PEEK study, which includes a 44 minute overview video presentation, has now been published here: www.cc-dr.org/2020aucll/ While of most
With thanks to the many members of our community who contributed their time last year to this comprehensive survey of those living with CLL and their carers, the CLL PEEK study, which includes a 44 minute overview video presentation, has now been published here: www.cc-dr.org/2020aucll/ While of most
AussieNeil
Administrator
in
CLL Support
3 years ago
Tetanus Injestion
While speaking to other
Leukaemia
sufferers I discovered that 4 other sufferers including myself got a tetanus injection a short while before been diagnosed with cll. One other got connective tissue disorder. I am just putting this out there to see if anyone else had the same experience.
While speaking to other
Leukaemia
sufferers I discovered that 4 other sufferers including myself got a tetanus injection a short while before been diagnosed with cll. One other got connective tissue disorder. I am just putting this out there to see if anyone else had the same experience.
EPPL
in
CLL Ireland
3 years ago
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The Lambda variant is now in 29 countries, but what evidence do we have that it’s more dangerous?
...........................................A variant of interest is one that has mutations that are predicted or known to affect things such as transmissibility (how easily the virus spreads), severity of disease, ability to evade immunity from past infections or vaccines, or confound diagnostic tests
...........................................A variant of interest is one that has mutations that are predicted or known to affect things such as transmissibility (how easily the virus spreads), severity of disease, ability to evade immunity from past infections or vaccines, or confound diagnostic tests
2greys
in
Lung Conditions Community Forum
3 years ago
Experimental Immunotherapy Cures Girl Of Autoimmune Disease
Cell therapy with CAR-T cells is already being successfully used to treat
leukaemia
and lymphoma.’ In March 2021, Thu-Thao V was treated at Universitätsklinikum Erlangen with CAR-T cells. Following the therapy, the CAR-T cell numbers rapidly increased and remained circulating in her system.
Cell therapy with CAR-T cells is already being successfully used to treat
leukaemia
and lymphoma.’ In March 2021, Thu-Thao V was treated at Universitätsklinikum Erlangen with CAR-T cells. Following the therapy, the CAR-T cell numbers rapidly increased and remained circulating in her system.
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
3 years ago
Ruxolitinib and vaccine efficacy
Has anyone extracted anything useful from the blizzard of recent press coverage and small-scale studies with immunosuppressed individuals, about what exactly is the vaccine efficacy for those of us on Ruxolitinib? I am thoroughly confused and how safe I am now that I’ve been double vaccinated. Can our
Has anyone extracted anything useful from the blizzard of recent press coverage and small-scale studies with immunosuppressed individuals, about what exactly is the vaccine efficacy for those of us on Ruxolitinib? I am thoroughly confused and how safe I am now that I’ve been double vaccinated. Can our
Rob58
in
MPN Voice
3 years ago
BTK inhibitors for the treatment of CLL - the current state of play of 'brutinibs'
-nicole-lamanna
UPDATE 25 Feb 2022:
Understanding mechanisms of resistance to Pirtobrutinib in Chronic Lymphocytic
Leukaemia
https://healthunlocked.com/cllsupport/posts/147628107/understanding-mechanisms-of-resistance-to-pirtobrutinib-in-chronic-lymphocytic-
leukaemia
UPDATE 22 March 2022: The
-nicole-lamanna
UPDATE 25 Feb 2022:
Understanding mechanisms of resistance to Pirtobrutinib in Chronic Lymphocytic
Leukaemia
https://healthunlocked.com/cllsupport/posts/147628107/understanding-mechanisms-of-resistance-to-pirtobrutinib-in-chronic-lymphocytic-
leukaemia
UPDATE 22 March 2022: The
CLLerinOz
Volunteer
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
Administrator
in
Leukaemia CARE
3 years ago
Saxenda weight loss medication
I have myelofibrosis and take hydroxycarbamide. Can anyone tell me if there are any reasons why i should not have Saxenda which is a medicine to help you loose weight. Its a GLP1 hormone ( i understand) can anyone point me in the right direction. There are no drug interactions
I have myelofibrosis and take hydroxycarbamide. Can anyone tell me if there are any reasons why i should not have Saxenda which is a medicine to help you loose weight. Its a GLP1 hormone ( i understand) can anyone point me in the right direction. There are no drug interactions
Ginny70
in
MPN Voice
3 years ago
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
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
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
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
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
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