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Leukaemia Care Interview
Hello all, I have just finished recording an interview with
Leukaemia
Care for use in their Spot
Leukaemia
Early publicity in September. I think it went well and covered my story from pre diagnosis through to where I am now.
Hello all, I have just finished recording an interview with
Leukaemia
Care for use in their Spot
Leukaemia
Early publicity in September. I think it went well and covered my story from pre diagnosis through to where I am now.
kitchengardener2
in
CLL Support
3 years ago
Sodabread
Hi can anyone give me some information about how they felt starting on Ruxolitinib. My consultant wants to start me on this but I am not sure how I feel about it - so some for and against answers would be helpful. I had been on Hydroxy for about 20 years but stopped a few months ago as leg ulcers etc
Hi can anyone give me some information about how they felt starting on Ruxolitinib. My consultant wants to start me on this but I am not sure how I feel about it - so some for and against answers would be helpful. I had been on Hydroxy for about 20 years but stopped a few months ago as leg ulcers etc
Sodabread
in
MPN Voice
3 years ago
An unusual, potent antibody to SARS-CoV-2 variants is isolated from a recovered patient
Given time, ongoing mutation of the SARS-COV2 virus is likely to produce a super-lineage, at least as transmissible as the Delta variant and more resistant to current vaccines and monoclonal antibodies aimed at different targets in the receptor binding domain of the spike protein. A variety of candidate
Given time, ongoing mutation of the SARS-COV2 virus is likely to produce a super-lineage, at least as transmissible as the Delta variant and more resistant to current vaccines and monoclonal antibodies aimed at different targets in the receptor binding domain of the spike protein. A variety of candidate
bennevisplace
in
CLL Support
3 years ago
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My husband (66) newly diagnosed with full blown CLL, otherwise good health. Just started on Imbruvica this week.. just trying to learn everything about the journey we are on. Waiting to get the results of the FISH test done a week ago.
My husband (66) newly diagnosed with full blown CLL, otherwise good health. Just started on Imbruvica this week.. just trying to learn everything about the journey we are on. Waiting to get the results of the FISH test done a week ago.
GrannyMyers
in
CLL Support
3 years ago
Et with calr gene
I finally got my diagnosis i have essential thrombocythemia with calr mutant gene, just started on an asprin platelets are at 690 would appreciate anyones stories on this Thanks Marie
I finally got my diagnosis i have essential thrombocythemia with calr mutant gene, just started on an asprin platelets are at 690 would appreciate anyones stories on this Thanks Marie
iffs
in
MPN Voice
3 years ago
Long Term INF Results
I've posted on other threads about INF treatments. I decided to start a new post since I just came across a most relevant study that should wake up our doctors if they are paying attention. In any other cancer I think this result would be called revolutionary, but since ours is such a slow motion and
I've posted on other threads about INF treatments. I decided to start a new post since I just came across a most relevant study that should wake up our doctors if they are paying attention. In any other cancer I think this result would be called revolutionary, but since ours is such a slow motion and
EPguy
in
MPN Voice
3 years ago
Some CLL clinical trials insist that patients have multiple CT scans. Every test should have a reason.
Special Article: The Cumulative Risk of Multiple CT Scans on Blood Cancer Patients Enrolled in Clinical Trials by Board member Bob Levis. Some CLL clinical trials insist that patients have multiple CT scans. Every test should have a reason. Patients should ask questions! https://cllsociety.org/2021/09
Special Article: The Cumulative Risk of Multiple CT Scans on Blood Cancer Patients Enrolled in Clinical Trials by Board member Bob Levis. Some CLL clinical trials insist that patients have multiple CT scans. Every test should have a reason. Patients should ask questions! https://cllsociety.org/2021/09
bkoffman
CLL CURE Hero
in
CLL Support
3 years ago
CLL Society Webinar The Right Tests at the Right Time for CLL. Tests to guide treatment in all phases of CLL have never been better!
Coming this Friday October 15th: The Right Tests at the Right Time! Testing to guide treatment in all phases of CLL has never been better! Hear the stunning first-hand accounts of CLL patients Tammi Garrett and David Klausmeyer, whose treatment regimens were radically changed by critical testing, echoing
Coming this Friday October 15th: The Right Tests at the Right Time! Testing to guide treatment in all phases of CLL has never been better! Hear the stunning first-hand accounts of CLL patients Tammi Garrett and David Klausmeyer, whose treatment regimens were radically changed by critical testing, echoing
bkoffman
CLL CURE Hero
in
CLL Support
3 years ago
No more mutation test?
Hey guys! I just went to my hematologist and he said that only 50 to 60 percent of people will test positive on Jak2 mutation for ET, then here in our country the other 2 mutations are expensive each test is 300USD and he suggest that I should prioritize my bone marrow biopsy. Also should i choose being
Hey guys! I just went to my hematologist and he said that only 50 to 60 percent of people will test positive on Jak2 mutation for ET, then here in our country the other 2 mutations are expensive each test is 300USD and he suggest that I should prioritize my bone marrow biopsy. Also should i choose being
Anonymous022719-
in
MPN Voice
3 years ago
Extremely worried about the value of IL-6 and IL-8 explored, what should I do?
I'm 34 years old only, and have been in MF3 since 2017 diagnosed. Very bad state I was megalosplenia when I diagnosed. Now I take Ruxolitinib 7.5mg/bid /day and interferon per several days. The hemogram was controlled lower than normal, especially platelet. I have taken Ruxolitinib for 3 years, obviously
I'm 34 years old only, and have been in MF3 since 2017 diagnosed. Very bad state I was megalosplenia when I diagnosed. Now I take Ruxolitinib 7.5mg/bid /day and interferon per several days. The hemogram was controlled lower than normal, especially platelet. I have taken Ruxolitinib for 3 years, obviously
merlisa
in
MPN Voice
3 years ago
Richter transformation of CLL: a British Society for Haematology Good Practice Paper
This best practice paper, written by some of the best and most respected CLL experts in the UK and published on 4th October 2021 following a review of all the evidence and clinical trials available, should form the basis for the treatment of Richter's Syndrome in hospitals in the UK. Details here:
This best practice paper, written by some of the best and most respected CLL experts in the UK and published on 4th October 2021 following a review of all the evidence and clinical trials available, should form the basis for the treatment of Richter's Syndrome in hospitals in the UK. Details here:
Jm954
Administrator
in
CLL Support
3 years ago
Lymph node biopsy results
Hello everyone, just a quick update- my husband finally went for results of lymph node biopsy and thank goodness no mutations. We’re now trying to decide whether to have ibrutinab or ventoclax treatment. Best wishes to everyone Lesley 😊
Hello everyone, just a quick update- my husband finally went for results of lymph node biopsy and thank goodness no mutations. We’re now trying to decide whether to have ibrutinab or ventoclax treatment. Best wishes to everyone Lesley 😊
Lesley3
in
CLL Support
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,
Thank you for joining the LLS National Patient Registry and playing such an important role in our efforts to support blood cancer patients during the pandemic. Information continues to change rapidly, and vaccine effectiveness for blood cancer patients remains an urgent issue. That is why LLS is
Thank you for joining the LLS National Patient Registry and playing such an important role in our efforts to support blood cancer patients during the pandemic. Information continues to change rapidly, and vaccine effectiveness for blood cancer patients remains an urgent issue. That is why LLS is
lankisterguy
Volunteer
in
CLL Support
3 years ago
Bispecific Antibodies and CLL
Last year Dr Brian Koffman https://healthunlocked.com/user/bkoffman wrote a succinct piece Bispecific Antibodies: what are they and are they the future of treatment for CLL (chronic lymphocytic leukemia)? https://cllsociety.org/2020/06/bispecific-antibodies-what-are-they-and-are-they-the-future-of-treatment-for-cll-chronic-lymphocytic-leukemia
Last year Dr Brian Koffman https://healthunlocked.com/user/bkoffman wrote a succinct piece Bispecific Antibodies: what are they and are they the future of treatment for CLL (chronic lymphocytic leukemia)? https://cllsociety.org/2020/06/bispecific-antibodies-what-are-they-and-are-they-the-future-of-treatment-for-cll-chronic-lymphocytic-leukemia
bennevisplace
in
CLL Support
3 years ago
Expert Perspective on Key Trial Updates in Treatment of CLL: What You Need to Know From ASCO/EHA/ICML 2021
17th Sept 21 [i]"George Follows, a UK CLL expert, provides his thoughts on updated data from key studies in chronic lymphocytic leukemia (CLL) that were presented at the 2021 meetings of the American Society of Clinical Oncology (ASCO), European Hematology Association (EHA), and International Conference
17th Sept 21 [i]"George Follows, a UK CLL expert, provides his thoughts on updated data from key studies in chronic lymphocytic leukemia (CLL) that were presented at the 2021 meetings of the American Society of Clinical Oncology (ASCO), European Hematology Association (EHA), and International Conference
Jm954
Administrator
in
CLL Support
3 years ago
Is this right?
I understand that chronic
leukaemia
patients (including MPNs) who are on treatment such as Jak2 inhibitors should be called for a third primary dose.
I understand that chronic
leukaemia
patients (including MPNs) who are on treatment such as Jak2 inhibitors should be called for a third primary dose.
beetle
in
MPN Voice
3 years ago
Cancer experts offer guidance on COVID-19 vaccination for patients with blood cancer, including Chronic Lymphocytic Leukaemia (CLL)
While not CLL specific, there shouldn't be any surprises here. However it is still worth repeating in an unlocked post for anyone with CLL looking for guidance. [i]A collaborative team of cancer experts from leading academic institutions and organizations has released recommendations for optimal protection
While not CLL specific, there shouldn't be any surprises here. However it is still worth repeating in an unlocked post for anyone with CLL looking for guidance. [i]A collaborative team of cancer experts from leading academic institutions and organizations has released recommendations for optimal protection
AussieNeil
Partner
in
CLL Support
3 years ago
Please help us understand your experience of care and treatment during the pandemic
Our Advocacy Team are looking to better understand how the care and treatment of
leukaemia
may have been affected by the COVID-19 pandemic. If you’re a
leukaemia
patient, click the link to take our survey and have your voice heard ➜ https://bit.ly/LCAdvocacySurvey
Our Advocacy Team are looking to better understand how the care and treatment of
leukaemia
may have been affected by the COVID-19 pandemic. If you’re a
leukaemia
patient, click the link to take our survey and have your voice heard ➜ https://bit.ly/LCAdvocacySurvey
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Harvoni and CLL
Has anyone heard of the Hepatitis C medication Harvoni causing CLL? I was treated with it in 2015. I have CBC tests from 2014 and 2015 showing normal lymphocytes. The first elevated CBC panel I can find is 2016. I see my numbers still elevated in 2018. I was diagnosed in 2021. When I was I was told
Has anyone heard of the Hepatitis C medication Harvoni causing CLL? I was treated with it in 2015. I have CBC tests from 2014 and 2015 showing normal lymphocytes. The first elevated CBC panel I can find is 2016. I see my numbers still elevated in 2018. I was diagnosed in 2021. When I was I was told
Rando21
in
CLL Support
3 years ago
mpal leukaemia
Hi Would really love to hear from anyone who has experience with this rare type of
leukaemia
. My son was diagnosed in December 2020 and is about to undergo a bone marrow transplant
Hi Would really love to hear from anyone who has experience with this rare type of
leukaemia
. My son was diagnosed in December 2020 and is about to undergo a bone marrow transplant
su0906
in
Leukaemia Support
3 years ago
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