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Opportunity to support the listing of Acalabrutinib and Venetoclax for the treatment of Australians with CLL
No matter where you live, you can support the access of Australians with CLL to Acalabrutinib or Venetoclax treatment. Australia's Pharmaceutical Benefits Advisory Committee (PBAC) is soon assessing Acalabrutinib or Venetoclax for listing - which would make them an affordable treatment for Australians
No matter where you live, you can support the access of Australians with CLL to Acalabrutinib or Venetoclax treatment. Australia's Pharmaceutical Benefits Advisory Committee (PBAC) is soon assessing Acalabrutinib or Venetoclax for listing - which would make them an affordable treatment for Australians
AussieNeil
Partner
in
CLL Support
4 years ago
CLL - Extremely Vulnerable clarified
Previous posts have discussed the contentious issue of which CLL patients in the UK are classed as Extremely Vulnerable and are therefore eligible for government support. Members on watch and wait in Scotland have been excluded as they are not among those "who are at any stage of treatment". While few
Previous posts have discussed the contentious issue of which CLL patients in the UK are classed as Extremely Vulnerable and are therefore eligible for government support. Members on watch and wait in Scotland have been excluded as they are not among those "who are at any stage of treatment". While few
bennevisplace
in
CLL Support
4 years ago
good news and bad news
Good news & bad news today . I had my rutine blood sample taken yesterday and Dr called me today instead going to the Clinic .My inmunoglobulins have risen ( specially IGA which was a little low and now close to normal ) WCC is normal as it has been for several months...... but my hematocrit and Hemglobin
Good news & bad news today . I had my rutine blood sample taken yesterday and Dr called me today instead going to the Clinic .My inmunoglobulins have risen ( specially IGA which was a little low and now close to normal ) WCC is normal as it has been for several months...... but my hematocrit and Hemglobin
antonb
in
CLL Support
4 years ago
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Sheilding letter - I got one
Hi All I received this email see below - then forwarded it to my Dr surgery and they confirmed i should off had a letter and one arrived the next day. Covid-19 We are aware from feedback from patients that there is confusion over whether they should be shielding and what this means. In addition, many
Hi All I received this email see below - then forwarded it to my Dr surgery and they confirmed i should off had a letter and one arrived the next day. Covid-19 We are aware from feedback from patients that there is confusion over whether they should be shielding and what this means. In addition, many
TheFlyer
in
CLL Support
4 years ago
Covid-19: What, if anything, can we learn from integrative oncology experts?
I have just read a long article addressing possible concrete responses to Covid-19 by a doc specializing in integrative oncology. It was written for lay people (thank goodness!). Is there anyone in this group who sees an integrative oncologist for CLL? If there is, I would be interested in hearing
I have just read a long article addressing possible concrete responses to Covid-19 by a doc specializing in integrative oncology. It was written for lay people (thank goodness!). Is there anyone in this group who sees an integrative oncologist for CLL? If there is, I would be interested in hearing
hsouter
in
CLL Support
4 years ago
Videos now available - Webinar talks and Q&A sessions - leukaemia and COVID - 19
Yesterday, we hosted two webinars on coronavirus, featuring two specialists. These webinars on acute leukaemia and chronic lymphocytic leukaemia (CLL) can now be found on our YouTube > In the videos leading consultants are joined by patients as they discuss and answer questions about how COVID-19
Yesterday, we hosted two webinars on coronavirus, featuring two specialists. These webinars on acute leukaemia and chronic lymphocytic leukaemia (CLL) can now be found on our YouTube > In the videos leading consultants are joined by patients as they discuss and answer questions about how COVID-19
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Richter's transformation.
Hello everyone. Been a little out of the way this month. The news of Dave's death left me very emotionally ill. I got to know him and currently I still don't understand his sudden death. I want to update my health status. As you know with the coronavirus problem they have canceled all visits. My doctor
Hello everyone. Been a little out of the way this month. The news of Dave's death left me very emotionally ill. I got to know him and currently I still don't understand his sudden death. I want to update my health status. As you know with the coronavirus problem they have canceled all visits. My doctor
Priss69
in
CLL Support
4 years ago
UK CLL Forum *Follow-Up Survey for UK CLL Patients regarding the support you're getting- Please complete if you can.
The UK CLL Forum is the special interest group for medical doctors in UK with an interest and working in the clinical field of CLL management. They have partnered with CLL Support (who moderate this site) and Leukaemia Care to promote a survey which will inform future planning . This is their message
The UK CLL Forum is the special interest group for medical doctors in UK with an interest and working in the clinical field of CLL management. They have partnered with CLL Support (who moderate this site) and Leukaemia Care to promote a survey which will inform future planning . This is their message
Jm954
Administrator
in
CLL Support
4 years ago
Advice?
Newly diagnosed with PMR. Had a tapering dose of Prednisone (50mg x3 days, 40mg x 1 week, 30mg x 1 week and now on 20mg until I go back to Rheumatologist for follow up on May 27th). She proposed 3 medications to use for the future: Tocilizumab, Methotrexate or Hydrochloraquoin (sp?). I am interested
Newly diagnosed with PMR. Had a tapering dose of Prednisone (50mg x3 days, 40mg x 1 week, 30mg x 1 week and now on 20mg until I go back to Rheumatologist for follow up on May 27th). She proposed 3 medications to use for the future: Tocilizumab, Methotrexate or Hydrochloraquoin (sp?). I am interested
DianneRose409
in
PMRGCAuk
4 years ago
Jakafi for Patients with COVID-19
« Incyte announced that they are working in partnership with the FDA to initiate a phase III clinical trial to evaluate the efficacy and safety of ruxolitinib (Jakafi) plus standard-of-care (SoC), compared to SoC therapy alone, in patients with coronavirus disease 2019 (COVID-19) induced cytokine storm
« Incyte announced that they are working in partnership with the FDA to initiate a phase III clinical trial to evaluate the efficacy and safety of ruxolitinib (Jakafi) plus standard-of-care (SoC), compared to SoC therapy alone, in patients with coronavirus disease 2019 (COVID-19) induced cytokine storm
Manouche
in
MPN Voice
4 years ago
Essential thrombocytosis
I have been dx with essential thrombocytosis. I have went for a year with a high wbc of 12.44 (or higher) and platelets of 513 (or higher). I have had a bone biopsy and it came back no cancer. I also run a low grade fever of around 99.8 every day. My joints ache all the time. My oncologist said I'm
I have been dx with essential thrombocytosis. I have went for a year with a high wbc of 12.44 (or higher) and platelets of 513 (or higher). I have had a bone biopsy and it came back no cancer. I also run a low grade fever of around 99.8 every day. My joints ache all the time. My oncologist said I'm
Kimsteff
in
MPN Voice
4 years ago
Naked Scientist Podcast: COVID- 19 mutations - 25 min -
https://podcasts.apple.com/us/podcast/naked-genetics-from-the-naked-scientists/id527187069?i=1000471544600 From Naked Scientist series - the Naked Geneticist April15,2020. Several discussions w international scientist working w the virus using different approaches. (January 9,2020 is one of the dates
https://podcasts.apple.com/us/podcast/naked-genetics-from-the-naked-scientists/id527187069?i=1000471544600 From Naked Scientist series - the Naked Geneticist April15,2020. Several discussions w international scientist working w the virus using different approaches. (January 9,2020 is one of the dates
db601
in
CLL Support
4 years ago
CLL Medications and Corona Virus
I read a fascinating transcript of a moderated meeting between a Patient Power host and three very talented CLL Specialists. It had to do with the latest CLL Medications being considered at possible treatments for non CLL Corona Virus victims. In essence they were saying that the medical community is
I read a fascinating transcript of a moderated meeting between a Patient Power host and three very talented CLL Specialists. It had to do with the latest CLL Medications being considered at possible treatments for non CLL Corona Virus victims. In essence they were saying that the medical community is
wizzard166
in
CLL Support
4 years ago
Marginal Zone Lymphoma (MZL) or Aggressive/Transformed CLL?
Hi everyone, What are the key markers for MZL? So far I have CD23-, CD43-, CD5-. Are these accurate, and what are other key markers, including genetic phenotype? Pathologists (both are highly respected institutions--CLL society approved) are conflicted about my dad's diagnosis--whether it is aggressive
Hi everyone, What are the key markers for MZL? So far I have CD23-, CD43-, CD5-. Are these accurate, and what are other key markers, including genetic phenotype? Pathologists (both are highly respected institutions--CLL society approved) are conflicted about my dad's diagnosis--whether it is aggressive
Phs2385
in
CLL Support
4 years ago
An account of a brain cell transplant
This stem cell transplant did not produce a cure but it is an interesting read to understand where the state of medicine is right now regarding a cure or at least a treatment for Parkinson's disease. https://www.statnews.com/2020/05/12/medical-first-parkinsons-brain-cell-transplant-stem-cells/
This stem cell transplant did not produce a cure but it is an interesting read to understand where the state of medicine is right now regarding a cure or at least a treatment for Parkinson's disease. https://www.statnews.com/2020/05/12/medical-first-parkinsons-brain-cell-transplant-stem-cells/
Zardoz
in
Cure Parkinson's
4 years ago
Sign up to our weekly newsletter and get all our advice and recommendations for self-isolation straight to your inbox
Stay informed about all our latest activities, events and news on our quest to support anyone affected by a blood cancer.
Sign up to our newsletter and keep up-to-date with what's happening at Leukaemia Care
https://www.leukaemiacare.org.uk/communication-preferences/ Read our regularly updated
Stay informed about all our latest activities, events and news on our quest to support anyone affected by a blood cancer.
Sign up to our newsletter and keep up-to-date with what's happening at Leukaemia Care
https://www.leukaemiacare.org.uk/communication-preferences/ Read our regularly updated
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Covid-19 help get food
A lot of people are posting about difficulty and worry over getting food / delivery slots ... I hope this helps... 1. Contact your local council Local U.K. councils are working to link people who can’t shop with volunteers who can shop for you. 2. Contact Local age concern branch as they are organising
A lot of people are posting about difficulty and worry over getting food / delivery slots ... I hope this helps... 1. Contact your local council Local U.K. councils are working to link people who can’t shop with volunteers who can shop for you. 2. Contact Local age concern branch as they are organising
Laax
in
MPN Voice
4 years ago
B-PLL: Ibrutrinib Monotherapy or Obinutuzumab (aka Gazyva) & Venetoclax Combination as first-line treatment for transformed CLL
Hi Everyone, I'm new to this group. My Dad has CLL with a B-PLL transformation in his lymph nodes. He has good genetic markers (TP53 unmutated, 17P undeleted) but is IGHV unmutated. We have two CLL experts who propose different treatment plans for first-line therapy: 1) Monotherapy Ibrutinib or Acalabrutinib
Hi Everyone, I'm new to this group. My Dad has CLL with a B-PLL transformation in his lymph nodes. He has good genetic markers (TP53 unmutated, 17P undeleted) but is IGHV unmutated. We have two CLL experts who propose different treatment plans for first-line therapy: 1) Monotherapy Ibrutinib or Acalabrutinib
Phs2385
in
CLL Support
4 years ago
Covid Crisis and Volunteering.
NewsHealth NHS volunteering: how to volunteer to help during the UK coronavirus lockdown, and roles available The government initially appealed for 250,000 to help the health service out - but more than double that number signed up By Benjamin Butterworth Thursday, 26th March 2020, 2:44 pm Updated
NewsHealth NHS volunteering: how to volunteer to help during the UK coronavirus lockdown, and roles available The government initially appealed for 250,000 to help the health service out - but more than double that number signed up By Benjamin Butterworth Thursday, 26th March 2020, 2:44 pm Updated
dembonesDAMNBONES
in
Lung Conditions Community Forum
4 years ago
Transfusions
I have to go for five-weekly transfusions. (I have Myelofibrosis and am on Ruxo and Epo injections) I am extremely worried about going to the hospital. Two weeks ago none of the medical staff was wearing protective clothing, and as I am there for at least 5 hours the possibility of catching Coronavirus
I have to go for five-weekly transfusions. (I have Myelofibrosis and am on Ruxo and Epo injections) I am extremely worried about going to the hospital. Two weeks ago none of the medical staff was wearing protective clothing, and as I am there for at least 5 hours the possibility of catching Coronavirus
skipperL
in
MPN Voice
4 years ago
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