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Painful hands
I have had Lupus SLE for 16 years. My main problems are skin related. At the moment I am not on any medication as all of the ones I have tried ( and there have been many) seem to have unpleasant side effects. My Rhemy now wants me to try Rituximab which I am scared to try but will probably end up having
I have had Lupus SLE for 16 years. My main problems are skin related. At the moment I am not on any medication as all of the ones I have tried ( and there have been many) seem to have unpleasant side effects. My Rhemy now wants me to try Rituximab which I am scared to try but will probably end up having
littlemissp
in
LUPUS UK
4 years ago
Immunophenotyping
Hi, just got my result from immunophenotying said it show classic 5 of 5 for CLL do not know what that means diagnosed with SLL in December 2016. have had doubling of lymphocytes and WBC since March this year and also some night sweat very easily fatigued, should be starting Acalabrutinib shortly seeing
Hi, just got my result from immunophenotying said it show classic 5 of 5 for CLL do not know what that means diagnosed with SLL in December 2016. have had doubling of lymphocytes and WBC since March this year and also some night sweat very easily fatigued, should be starting Acalabrutinib shortly seeing
jaybrjod
in
CLL Support
4 years ago
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.
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.
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
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We are mutating SARS-CoV-2, but it is evolving back.
Scientists investigating the evolution of the virus that causes Covid19 say that its mutation seems to be directed by human proteins that degrade it, but natural selection of the virus enables it to bounce back. The findings could help in the design of vaccines against the virus. All organisms mutate
Scientists investigating the evolution of the virus that causes Covid19 say that its mutation seems to be directed by human proteins that degrade it, but natural selection of the virus enables it to bounce back. The findings could help in the design of vaccines against the virus. All organisms mutate
2greys
in
Lung Conditions Community Forum
4 years ago
Atypical cases of necrotizing sweet syndrome in patients with myelodysplastic syndrome and acute myeloid leukaemia
In approx. 15-20% of SWEET'S SYNDROME patients, their condition can be triggered by CANCER, one of the commonest being myelodyplastic syndromes which can progress to acute myeloid
leukaemia
.
In approx. 15-20% of SWEET'S SYNDROME patients, their condition can be triggered by CANCER, one of the commonest being myelodyplastic syndromes which can progress to acute myeloid
leukaemia
.
Shell567
Sweet's Syndrome UK
in
Sweet's Syndrome UK
4 years ago
COVID-19 vaccine has hefty response in nonhuman primates
A replicating RNA vaccine, formulated with a lipid-based nanoparticle emulsion that goes by the acronym LION, produces antibodies against the COVID-19 coronavirus in mice and primates with a single immunization. These antibodies potently neutralize the virus. The effects occurred within two weeks after
A replicating RNA vaccine, formulated with a lipid-based nanoparticle emulsion that goes by the acronym LION, produces antibodies against the COVID-19 coronavirus in mice and primates with a single immunization. These antibodies potently neutralize the virus. The effects occurred within two weeks after
2greys
in
Lung Conditions Community Forum
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.
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.
Jm954
Administrator
in
CLL Support
4 years ago
Blood results in CBC
Hi All, I wrote two months ago that my blood work had returned to normal after two abnormal and a tentative dx of CLL. Well, this month it is abnormal again. I am so confused. The receptionist said they never diagnose until at least six months of blood results.
Hi All, I wrote two months ago that my blood work had returned to normal after two abnormal and a tentative dx of CLL. Well, this month it is abnormal again. I am so confused. The receptionist said they never diagnose until at least six months of blood results.
gustave
in
CLL Support
4 years ago
Free Prescription home deliveries appear to have been stopped by Boots
Since the start of lockdown my local Boots pharmacy has been efficiently delivering my prescriptions to my front door. Latest was sent my GP to them 2 weeks ago. I rang today and was told as the Government had stopped support for the vulnerable, they has stopped free deliveries. The very nice manager
Since the start of lockdown my local Boots pharmacy has been efficiently delivering my prescriptions to my front door. Latest was sent my GP to them 2 weeks ago. I rang today and was told as the Government had stopped support for the vulnerable, they has stopped free deliveries. The very nice manager
Harvist
in
CLL Support
4 years ago
SLL/CLL Numbers
Thanks for all of you with your previous replies. As you know I have been diagnosed last month with SLL/CLL and now I have all my test results. I hope you can share your experience with similar results to mine and dice me with what to expect: 1) CBC all numbers are within the normal range 2) Flow
Thanks for all of you with your previous replies. As you know I have been diagnosed last month with SLL/CLL and now I have all my test results. I hope you can share your experience with similar results to mine and dice me with what to expect: 1) CBC all numbers are within the normal range 2) Flow
Egypt58
in
CLL Support
4 years ago
Shielding in the different UK countries for people with blood cancers – FAQs
Our guide on shielding and physical distancing has been updated by our Advocacy team to include the latest changes to the shielding guidance in each of the UK countries by the governments. https://www.leukaemiacare.org.uk/support-and-information/latest-from-
leukaemia
-care/blog/shielding-for-people-with-blood-cancers-faqs
Our guide on shielding and physical distancing has been updated by our Advocacy team to include the latest changes to the shielding guidance in each of the UK countries by the governments. https://www.leukaemiacare.org.uk/support-and-information/latest-from-
leukaemia
-care/blog/shielding-for-people-with-blood-cancers-faqs
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
11.30 today join the Welsh experts to discuss shielding in Wales
Good Morning 🔴 Today we are hosting a Wales
leukaemia
patients' shielding update and Q&A at 11:30am. Welsh patients and experts will discuss shielding in Wales.
Good Morning 🔴 Today we are hosting a Wales
leukaemia
patients' shielding update and Q&A at 11:30am. Welsh patients and experts will discuss shielding in Wales.
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Clemastine (Tavegyl), an over-the-counter drug, found to be effective at inducing LMP and cell death
For what it may be worth, thougbt some of you might like to see this: "Lysosomes in chronic lymphocytic leukemia (CLL) cells have previously been identified as a promising target for therapeutic intervention in combination with targeted therapies. Recent studies have shown that antihistamines can induce
For what it may be worth, thougbt some of you might like to see this: "Lysosomes in chronic lymphocytic leukemia (CLL) cells have previously been identified as a promising target for therapeutic intervention in combination with targeted therapies. Recent studies have shown that antihistamines can induce
Pogee
in
CLL Support
4 years ago
11.30 today join the Welsh experts to discuss shielding in Wales
Good Morning all 🔴 Today we are hosting a Wales
leukaemia
patients' shielding update and Q&A at 11:30am. Welsh patients and experts will discuss shielding in Wales.
Good Morning all 🔴 Today we are hosting a Wales
leukaemia
patients' shielding update and Q&A at 11:30am. Welsh patients and experts will discuss shielding in Wales.
HAIRBEAR_UK
Administrator
in
CLL Support
4 years ago
T cell leukemia
Just diagnosed with T cell leukemia, I do not have a subtype yet. Any other T cell types out there?
Just diagnosed with T cell leukemia, I do not have a subtype yet. Any other T cell types out there?
Mom-mom-e
in
CLL Support
4 years ago
Imbruvica-related issues: Qs + comments
The following are questions and comments I'll be asking my oncologist when I see him tomorrow. I believe at least some of them might be relevant to what some among us are experiencing and research some of us are engaging in. Clearly, none of the comments here are meant to be authoritative nor intended
The following are questions and comments I'll be asking my oncologist when I see him tomorrow. I believe at least some of them might be relevant to what some among us are experiencing and research some of us are engaging in. Clearly, none of the comments here are meant to be authoritative nor intended
Pogee
in
CLL Support
4 years ago
Why, with Chronic Lymphocytic Leukaemia, CLL, White Cell percentages can be dangerously misleading. You may not be neutropenic!
Frightened by falling neutrophils? Worried about being at a greater risk of infection? This is a common and often totally unnecessary fear, simply because standard blood count reports give more emphasis to presenting the
percentages*
of the different white blood cell types than the absolute
Frightened by falling neutrophils? Worried about being at a greater risk of infection? This is a common and often totally unnecessary fear, simply because standard blood count reports give more emphasis to presenting the
percentages*
of the different white blood cell types than the absolute
AussieNeil
Partner
in
CLL Support
4 years ago
FCR
I’ll avoid FCR at all. Dangerous and tricky. Increase the probability of AL occurrence as well as second neoplasm and Richter transformation in the long run. You have to be "fit patient” to receive FCR, IGHV mutated and without tp53 mutation or 17p deletion. Find a responsible doctor with a robust experience
I’ll avoid FCR at all. Dangerous and tricky. Increase the probability of AL occurrence as well as second neoplasm and Richter transformation in the long run. You have to be "fit patient” to receive FCR, IGHV mutated and without tp53 mutation or 17p deletion. Find a responsible doctor with a robust experience
Rccfrc00
in
CLL Support
4 years ago
flair ..fcr
hi all i have had cll from 2012 i have been on w&w my question is i have signed up for the flair trail Manchester Christie i got phone call this week saying i was randomized for FCR my age is 57yrs i have no tp53 or any other abnormal readings and i dont know what my mutations are etc mutated or unmutated
hi all i have had cll from 2012 i have been on w&w my question is i have signed up for the flair trail Manchester Christie i got phone call this week saying i was randomized for FCR my age is 57yrs i have no tp53 or any other abnormal readings and i dont know what my mutations are etc mutated or unmutated
kel555
in
CLL Support
4 years ago
Documented remission without drugs
I've just come across an article on a remarkable, well-documented, case of a younger man with CLL who, over time, achieved complete remission without drugs. Here's the link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4739749/ * I hasten to add that this is but a single case, and I'm not recommending
I've just come across an article on a remarkable, well-documented, case of a younger man with CLL who, over time, achieved complete remission without drugs. Here's the link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4739749/ * I hasten to add that this is but a single case, and I'm not recommending
Pogee
in
CLL Support
4 years ago
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