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10 Years With CLL: Two Trials & Lifesaving CAR T-Cell Therapy
I rarely cross post to Patient Power but today there is a story by a fellow CLL patient I have known for many years as DebinOz. She is one of the few I know of with a more aggressive form of CLL than mine. And I think she has more air miles than my 750,000 with United. Len - See: https://patientpower.info
I rarely cross post to Patient Power but today there is a story by a fellow CLL patient I have known for many years as DebinOz. She is one of the few I know of with a more aggressive form of CLL than mine. And I think she has more air miles than my 750,000 with United. Len - See: https://patientpower.info
lankisterguy
Volunteer
in
CLL Support
2 years ago
BTK inhibitor challenges by Dr. Nicole Lamanna
Nicole Lamanna, MD, continues her discussion on BTK inhibitor challenges. https://www.onclive.com/view/challenges-continued - This video is intended for Medical Professionals, using Med-Speak at a rapid pace, so I have pasted the transcript below. - Nicole Lamanna, MD: With the advent of the BTK [Bruton
Nicole Lamanna, MD, continues her discussion on BTK inhibitor challenges. https://www.onclive.com/view/challenges-continued - This video is intended for Medical Professionals, using Med-Speak at a rapid pace, so I have pasted the transcript below. - Nicole Lamanna, MD: With the advent of the BTK [Bruton
lankisterguy
Volunteer
in
CLL Support
2 years ago
Side effects of Interferon
Eight months ago I started taking Ruxolitinib. Prior to that I was taking HU which made me quite ill. However Ruxolitinib is not working and rather than my platelets lowering they have gone up, were 600 now 987 and sometimes higher, also I have developed a serious skin cancer on my neck and leg. I
Eight months ago I started taking Ruxolitinib. Prior to that I was taking HU which made me quite ill. However Ruxolitinib is not working and rather than my platelets lowering they have gone up, were 600 now 987 and sometimes higher, also I have developed a serious skin cancer on my neck and leg. I
Heather270240
in
MPN Voice
2 years ago
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46, Watch and Wait is over. Starting Acalibrutinib + Venetoclax - Anything I should look out for?
Hi everyone, first post for me. Diagnosed at 44, watch and wait for the last 2 years and now at 46 about to start my first treatment. Live in the Northeast US. Doc is signing me up for Acalibrutinib at the start and then working in Venetoclax slowly. Want to thank everyone on here for all of the
Hi everyone, first post for me. Diagnosed at 44, watch and wait for the last 2 years and now at 46 about to start my first treatment. Live in the Northeast US. Doc is signing me up for Acalibrutinib at the start and then working in Venetoclax slowly. Want to thank everyone on here for all of the
Flitzebogen
in
CLL Support
2 years ago
Phase 3, Trial of Interferon-α versus Hydroxyurea in Polycythemia Vera and Essential Thrombocythemia
Key Points Rates of thrombosis and progression were low in patients with ET/PV treated with either HU or IFN in this randomized study. PEG was more effective in normalizing counts and reducing JAK2V617F VAF in PV while HU induced more histopathologic responses in ET. https://ashpublications.org/blood
Key Points Rates of thrombosis and progression were low in patients with ET/PV treated with either HU or IFN in this randomized study. PEG was more effective in normalizing counts and reducing JAK2V617F VAF in PV while HU induced more histopathologic responses in ET. https://ashpublications.org/blood
Manouche
in
MPN Voice
2 years ago
Important SARS-CoV-2 and Covid-19 information for Chronic Lymphocytic Leukaemia/CLL patients
Recent advice (June 2022) in a
Leukaemia
Foundation webinar for patients in Australia was that they should not waste time waiting for a RAT/LFT to be able to determine if they are positive but to access a PCR test as soon as possible if Covid is suspected.
Recent advice (June 2022) in a
Leukaemia
Foundation webinar for patients in Australia was that they should not waste time waiting for a RAT/LFT to be able to determine if they are positive but to access a PCR test as soon as possible if Covid is suspected.
CLLerinOz
Volunteer
in
CLL Support
2 years ago
iNews posts about removing of PCR requirement
Patients not on the list are put at a life-threatening disadvantage because they must instead find a GP, hospital doctor or nurse, A&E doctor, or a 111 call handler willing to refer them for the treatment – a process the charity
Leukaemia
Care said has left patients feeling “unsupported, frightened and
Patients not on the list are put at a life-threatening disadvantage because they must instead find a GP, hospital doctor or nurse, A&E doctor, or a 111 call handler willing to refer them for the treatment – a process the charity
Leukaemia
Care said has left patients feeling “unsupported, frightened and
Bartlet
in
CLL Support
2 years ago
CLL patient cured a decade after gene therapy
In 2010, doctors treated Doug Olson’s leukemia with an experimental gene therapy that transformed some of his blood cells into cancer killers. More than a decade later, there’s no sign of cancer in his body. The treatment cured Olson and a second patient, according to the University of Pennsylvania doctors
In 2010, doctors treated Doug Olson’s leukemia with an experimental gene therapy that transformed some of his blood cells into cancer killers. More than a decade later, there’s no sign of cancer in his body. The treatment cured Olson and a second patient, according to the University of Pennsylvania doctors
WinJ3
in
CLL Support
2 years ago
Chlorinated water protective for CLL?
Wow, surprising. Just found out my water filter hadn't been working and I've been drinking different levels of chlorinated for ? years. So just quickly googled, wondering if that explained my diagnosis 2019. But no! Maybe I should turn off my filter and put Britta aside as well --
Wow, surprising. Just found out my water filter hadn't been working and I've been drinking different levels of chlorinated for ? years. So just quickly googled, wondering if that explained my diagnosis 2019. But no! Maybe I should turn off my filter and put Britta aside as well --
Vlaminck
in
CLL Support
2 years ago
can't get a letter for a priority PCR with CLL.
Tearing my hair out and getting nowhere trying to get myself a priority PCR! I am starting to feel forgotten and about by both my CNS and surgery. I have CLL on W&W. The surgery said I just need to ring 119. They will not help unless I have a letter. The CNS said noone has asked her for a letter before
Tearing my hair out and getting nowhere trying to get myself a priority PCR! I am starting to feel forgotten and about by both my CNS and surgery. I have CLL on W&W. The surgery said I just need to ring 119. They will not help unless I have a letter. The CNS said noone has asked her for a letter before
CrazyDaisy68
in
CLL Support
2 years ago
Evidence omicron risk is higher for blood cancer patients
after two vaccine doses, neutralising antibodies against omicron was detectable in 19% patients against delta was detetable in 39% against original SARS-CoV-2 in 89% patients (p<0.0001). After third vaccine dose, against omicron was 56% against delta 71% and original 86%. CLL patients may
after two vaccine doses, neutralising antibodies against omicron was detectable in 19% patients against delta was detetable in 39% against original SARS-CoV-2 in 89% patients (p<0.0001). After third vaccine dose, against omicron was 56% against delta 71% and original 86%. CLL patients may
Bartlet
in
CLL Support
2 years ago
Clinical trials for Richter's transformation
Hello. I would like to ask if you know of any current clinical trials for patients with Richter's Transformation who have already reached the Car-T and it did not work for them. We have in our group a very young 22-year-old boy whose Car-Ts didn't work for him in the UK. They have told him that they
Hello. I would like to ask if you know of any current clinical trials for patients with Richter's Transformation who have already reached the Car-T and it did not work for them. We have in our group a very young 22-year-old boy whose Car-Ts didn't work for him in the UK. They have told him that they
Priss69
in
CLL Support
2 years ago
Metformin and Ruxolitinib for PV?
Hello, Happy New Year (almost) to everyone. Maybe 2022 bring us all a good year of health and happiness. Has anyone researched using Metformin and Ruxolitinib for Polycythemia Vera? Or spoken to a doctor about it? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5833553/ Listening to longevity expert
Hello, Happy New Year (almost) to everyone. Maybe 2022 bring us all a good year of health and happiness. Has anyone researched using Metformin and Ruxolitinib for Polycythemia Vera? Or spoken to a doctor about it? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5833553/ Listening to longevity expert
Elizka
in
MPN Voice
2 years ago
Join us tomorrow for webinar - COVID-19 and leukaemia; what more do we know?
Helen is a clinical lecturer leading research into optimising vaccination strategies and minimising infection risk in patients with
leukaemia
Webinar details Date: Tuesday 28th September Time: 4:30pm Topic: COVID-19 and
leukaemia
; what more do we know?
Helen is a clinical lecturer leading research into optimising vaccination strategies and minimising infection risk in patients with
leukaemia
Webinar details Date: Tuesday 28th September Time: 4:30pm Topic: COVID-19 and
leukaemia
; what more do we know?
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
3 years ago
The promise of Mix and Match COVID-19 vaccinations
For details, see our maintained pinned post on this topic: https://healthunlocked.com/cllsupport/posts/147571873/important-sars-cov-2-and-covid-19-information-for-chronic-lymphocytic-
leukaemia
-cll-patients The conclusion of
Homologous and Heterologous Covid-19 Booster Vaccinations:
https://www.nature.com
For details, see our maintained pinned post on this topic: https://healthunlocked.com/cllsupport/posts/147571873/important-sars-cov-2-and-covid-19-information-for-chronic-lymphocytic-
leukaemia
-cll-patients The conclusion of
Homologous and Heterologous Covid-19 Booster Vaccinations:
https://www.nature.com
AussieNeil
Administrator
in
CLL Support
2 years ago
Wishing you all a Happy Christmas and New Year
Support available over Christmas https://www.leukaemiacare.org.uk/support-and-information/latest-from-
leukaemia
-care/news/support-available-over-christmas-2/ As a patient community we are here for each other and do receive notifications, so don't be hesitant to post a message and reach out during the
Support available over Christmas https://www.leukaemiacare.org.uk/support-and-information/latest-from-
leukaemia
-care/news/support-available-over-christmas-2/ As a patient community we are here for each other and do receive notifications, so don't be hesitant to post a message and reach out during the
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
2 years ago
DOES IVERMECTIN SLOW CLL
I previously posted that my absolute lymphocyte count was steadily growing then after I had both vaccinations my counts rose 50% in a few months. I later got covid and took ivermectin for a few days and my lymphocyte count went down from 30k to about 26.5k. I thought maybe a coincidence. Doing some
I previously posted that my absolute lymphocyte count was steadily growing then after I had both vaccinations my counts rose 50% in a few months. I later got covid and took ivermectin for a few days and my lymphocyte count went down from 30k to about 26.5k. I thought maybe a coincidence. Doing some
mleo123
in
CLL Support
2 years ago
This is not good enough !!!
Ronapreve, Monupiravir, Sotrovimab, only for some - and only when infected? This does not sound like protecting the immunocompromised - more like shutting the stable door for some and leaving it wide open for others. (These new treatments are not approved in the UK forCML, CMML, MPNs (PV, ET, myelofibrosis
Ronapreve, Monupiravir, Sotrovimab, only for some - and only when infected? This does not sound like protecting the immunocompromised - more like shutting the stable door for some and leaving it wide open for others. (These new treatments are not approved in the UK forCML, CMML, MPNs (PV, ET, myelofibrosis
Hidden
in
MPN Voice
2 years ago
Anti vaccination
I now have post Myelofibrosis AML. I’m worried about relatives who are anti vaccinations. I should keep away from them??
I now have post Myelofibrosis AML. I’m worried about relatives who are anti vaccinations. I should keep away from them??
Mysi
in
MPN Voice
2 years ago
Access to treatment and priority PCRs again
Response from
Leukaemia
Care Advocacy. "Thank you for bringing that to my attention, I wasn’t aware this was happening that the CMDU were turning people away due to severity of symptoms.
Response from
Leukaemia
Care Advocacy. "Thank you for bringing that to my attention, I wasn’t aware this was happening that the CMDU were turning people away due to severity of symptoms.
Sumoldbloke
in
CLL Support
2 years ago
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