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Life with cll. Another new concern.
Hi everyone, My last post was three weeks ago just after I had my tonsillectomy. And unfortunately today I got the results. It turns out my abnormal tonsils were full of cll cells. Or as my surgeon said loaded with cancer cells. Has anyone else here had the same experience or results? He recommended
Hi everyone, My last post was three weeks ago just after I had my tonsillectomy. And unfortunately today I got the results. It turns out my abnormal tonsils were full of cll cells. Or as my surgeon said loaded with cancer cells. Has anyone else here had the same experience or results? He recommended
Suzuki1000
in
CLL Support
4 years ago
March 7 2020 CLL PATIENT AND CAREGIVER EDUCATIONAL FORUM Saturday 8:00am - 12:30pm Rockefeller Auditorium 430 East 67th St Manhattan
To register: https://newyork2020.questionpro.com CLL Society Inc. • P. O. Box 1390 • Claremont CA 91711 • https://cllsociety.org 2019-2020 CLL PATIENT AND CAREGIVER EDUCATIONAL FORUM In partnership with Memorial Sloan Kettering Cancer Center, the CLL Society invites you to attend our informational CLL
To register: https://newyork2020.questionpro.com CLL Society Inc. • P. O. Box 1390 • Claremont CA 91711 • https://cllsociety.org 2019-2020 CLL PATIENT AND CAREGIVER EDUCATIONAL FORUM In partnership with Memorial Sloan Kettering Cancer Center, the CLL Society invites you to attend our informational CLL
lankisterguy
Volunteer
in
CLL Support
4 years ago
More ASCO abstracts and our quarterly Newsletter
We will be updating this using the data set from ASH early in 2020. https://cllsociety.org/2019/12/asco-2019-dr-koffmans-pick-5-mrd-negative-responses-after-liso-cel-or-jcar017-in-chronic-
lymphocytic
-
leukemia
-cll/ The CLL Society Tribune has been released!
We will be updating this using the data set from ASH early in 2020. https://cllsociety.org/2019/12/asco-2019-dr-koffmans-pick-5-mrd-negative-responses-after-liso-cel-or-jcar017-in-chronic-
lymphocytic
-
leukemia
-cll/ The CLL Society Tribune has been released!
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
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Essential thrombocytosis leg pain
I think I may have asked before i cant even remember. I have been having leg cramps/ pain around knee joints not severe my haematologist said it could be et related not sure? Should I push it with my gp. Does anyone else with et get this.
I think I may have asked before i cant even remember. I have been having leg cramps/ pain around knee joints not severe my haematologist said it could be et related not sure? Should I push it with my gp. Does anyone else with et get this.
Irishgal12
in
MPN Voice
4 years ago
Mutation's role in blood cancers revealed by ideal team-up
Post by MPN-MATE Admin » Sat Feb 01, 2020 4:35 am Hey everyone... :D Just thought that I would share this one with all of you... When we are diagnosed, our prognosis usually depends upon which MPN condition, (which are believed to be caused by our 'DRIVER' mutations), however what other more adverse
Post by MPN-MATE Admin » Sat Feb 01, 2020 4:35 am Hey everyone... :D Just thought that I would share this one with all of you... When we are diagnosed, our prognosis usually depends upon which MPN condition, (which are believed to be caused by our 'DRIVER' mutations), however what other more adverse
socrates_8
in
MPN Voice
4 years ago
War on blood Car -t cells
Did any one watch BBC war on blood and see how incredible brave the two unsuccessful patient faced their pain and subsequent deaths from Leukaemia . Certainly made me appreciate how fortunate my ET never developed into AML. So get on with life now. town Crier Et for 30 years.
Did any one watch BBC war on blood and see how incredible brave the two unsuccessful patient faced their pain and subsequent deaths from Leukaemia . Certainly made me appreciate how fortunate my ET never developed into AML. So get on with life now. town Crier Et for 30 years.
catkinspolymer
in
MPN Voice
4 years ago
What causes these horrific night sweats and does everyone get them ?
Hi All, 3 years on W&W and finally my time has arrived for treatment within the next 5 to 6 weeks. Chemo. Not really shocked just a bit numb really as just got used to the W&W scenario if you ever can. Positive about my treatment anxious about how it will feel. However I’ll be glad to get on with it
Hi All, 3 years on W&W and finally my time has arrived for treatment within the next 5 to 6 weeks. Chemo. Not really shocked just a bit numb really as just got used to the W&W scenario if you ever can. Positive about my treatment anxious about how it will feel. However I’ll be glad to get on with it
Roseneath69
in
CLL Support
4 years ago
Diagnosed essential thrombocytosis new
Hi guys so today I just got new am jak2 positive I am devastated crying o dont know what to think What does jak2 positive mean. An worrying about life expectancy and progression what life can I expect? Am 32
Hi guys so today I just got new am jak2 positive I am devastated crying o dont know what to think What does jak2 positive mean. An worrying about life expectancy and progression what life can I expect? Am 32
Irishgal12
in
MPN Voice
4 years ago
Ongoing Research Poised to Add Options for Myelofibrosis Treatment
Post by MPN-MATE Admin » Wed Jan 29, 2020 10:14 am Hey all... :D I simply found this an optimistic and encouraging from the perspective of MF sufferers, and especially if & when their Ruxolitinib (aka Jakafi), loses some of its efficacy, which it tends to do after circa 3.2 years... It talks a little
Post by MPN-MATE Admin » Wed Jan 29, 2020 10:14 am Hey all... :D I simply found this an optimistic and encouraging from the perspective of MF sufferers, and especially if & when their Ruxolitinib (aka Jakafi), loses some of its efficacy, which it tends to do after circa 3.2 years... It talks a little
socrates_8
in
MPN Voice
4 years ago
Australians have your say in getting CLL medicines approved
Hi everyone, I am just reaching out to Aussies on this site to let you know that the following 2 treatments are being considered in March for public funding in Australia. If you would like to make a carer or patient submission about how important the availability of these therapies are for all eligible
Hi everyone, I am just reaching out to Aussies on this site to let you know that the following 2 treatments are being considered in March for public funding in Australia. If you would like to make a carer or patient submission about how important the availability of these therapies are for all eligible
lymphomaoz
in
CLL Support
4 years ago
Combined ruxolitinib and pegasys therapy for MF and PV gives great results. Danish phase 2 study Jan 2020 ( ruxopeg)
Hi I’ve pasted in the abstract of the Danish ruxopeg study instead of just the link, as it’s such an important result. The combination of ruxolitinib and pegasys does look to be worth trying.
Ruxolitinib And Interferon-Α2 Combination Therapy For Patients With Polycythemia Vera Or Myelofibrosis:
Hi I’ve pasted in the abstract of the Danish ruxopeg study instead of just the link, as it’s such an important result. The combination of ruxolitinib and pegasys does look to be worth trying.
Ruxolitinib And Interferon-Α2 Combination Therapy For Patients With Polycythemia Vera Or Myelofibrosis:
Rachelthepotter
in
MPN Voice
4 years ago
Can CLL treatment or CLL cause bladder cancer?
I had CLL (in remission) and was on IBR for 2 years. I recently have been treated for bladder cancer during the last 12 months or so and after treatment irradiated the cancer with one small reoccurrence . My question is has anybody experienced bladder cancer after getting treatment with Ibrutinib or
I had CLL (in remission) and was on IBR for 2 years. I recently have been treated for bladder cancer during the last 12 months or so and after treatment irradiated the cancer with one small reoccurrence . My question is has anybody experienced bladder cancer after getting treatment with Ibrutinib or
barger1951
in
CLL Support
4 years ago
Childhood ALL video update by Dr Sara Ghorashian from the 2019 American Society of Hematology (ASH)
We spoke to a number of blood cancer experts at the 2019 meeting of the American Society of Hematology (ASH). In this video interview Dr Sara Ghorashian describes the remaining challenges in the treatment of childhood acute lymphoblastic leukaemia (ALL), and how these could be addressed. https://youtu.be
We spoke to a number of blood cancer experts at the 2019 meeting of the American Society of Hematology (ASH). In this video interview Dr Sara Ghorashian describes the remaining challenges in the treatment of childhood acute lymphoblastic leukaemia (ALL), and how these could be addressed. https://youtu.be
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Video Interview: Acute lymphoblastic leukaemia (ALL) research updates from ASH 2019. How genetic information aids diagnosis and treatment
In December 2019, our Patient Advocacy team attended the annual American Society of Hematology (ASH) conference in Florida, where the latest research in haematology was presented. Whilst there, the team spoke to a number of experts, in these first two videos we hear from Professor Anthony Moorman on
In December 2019, our Patient Advocacy team attended the annual American Society of Hematology (ASH) conference in Florida, where the latest research in haematology was presented. Whilst there, the team spoke to a number of experts, in these first two videos we hear from Professor Anthony Moorman on
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Reporting from ASCO 2019 (yes ASCO, not ASH)
Very excited to be presenting our own research: An Innovative Telemedicine Platform to Provide Expert Access to Patients with Chronic
Lymphocytic
Leukemia
(CLL) https://ash.confex.com/ash/2019/webprogram/Paper123579.html.
Very excited to be presenting our own research: An Innovative Telemedicine Platform to Provide Expert Access to Patients with Chronic
Lymphocytic
Leukemia
(CLL) https://ash.confex.com/ash/2019/webprogram/Paper123579.html.
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
Targeting cell death: helping push cancer cells over the edge
The BCL-2 family regulate one of the body’s apoptotic pathways. As scientists understand more about these proteins, they are able to push the boundaries of cancer research. The BCL-2 family is broadly divided into two types: pro-survival proteins, including BCL-2, BCL-XL, BCL-W and MCL-1, which help
The BCL-2 family regulate one of the body’s apoptotic pathways. As scientists understand more about these proteins, they are able to push the boundaries of cancer research. The BCL-2 family is broadly divided into two types: pro-survival proteins, including BCL-2, BCL-XL, BCL-W and MCL-1, which help
Jm954
Administrator
in
CLL Support
4 years ago
YABTKi or Yet Another BTK inhibitor - the A to Z list of Bruton's Tyrosine Kinase Inhibitors for CLL following Ibrutinib's success
A decade of improvement in Chronic
Leukemia
treatments means a shorter life expectancy is no longer a given https://healthunlocked.com/cllsupport/posts/private/147856246/a-decade-of-improvement-in-chronic-
lymphocytic
-
leukemia
-treatments-means-a-shorter-life-expectancy-is-no-longer-a-given
A decade of improvement in Chronic
Leukemia
treatments means a shorter life expectancy is no longer a given https://healthunlocked.com/cllsupport/posts/private/147856246/a-decade-of-improvement-in-chronic-
lymphocytic
-
leukemia
-treatments-means-a-shorter-life-expectancy-is-no-longer-a-given
AussieNeil
Partner
in
CLL Support
5 years ago
FISH testing and chromosomes for dummies
I am betting most of us had a cll tabula rasa at diagnosis, that is, our knowledge of cll was a blank slate. When told I had cll, all I heard was the word "leukemia". Google became my best friend and worst enemy. One of the first things I learned was that cll was not as bad as some other leukemias.
I am betting most of us had a cll tabula rasa at diagnosis, that is, our knowledge of cll was a blank slate. When told I had cll, all I heard was the word "leukemia". Google became my best friend and worst enemy. One of the first things I learned was that cll was not as bad as some other leukemias.
cajunjeff
in
CLL Support
4 years ago
High platelets essential thrombocytosis
So been to see haematologist today Pointless exercise- all bloods normal but jak2 mutation still outstanding. He said if its essential thrombocytosis I will need aspirin and not to worry? I honestly am so upset
So been to see haematologist today Pointless exercise- all bloods normal but jak2 mutation still outstanding. He said if its essential thrombocytosis I will need aspirin and not to worry? I honestly am so upset
Irishgal12
in
MPN Voice
4 years ago
CD3xCD19 Dart Treatment Is Efficient in Venetoclax Resistant CLL and Reverses T Cell Dysfunction
"[i]Agents targeting the apoptosis pathway, like the Bcl-2 inhibitor venetoclax, are highly effective in chronic
lymphocytic
leukemia
(CLL). However, not all patients experience deep responses and acquired resistance has already been described.
"[i]Agents targeting the apoptosis pathway, like the Bcl-2 inhibitor venetoclax, are highly effective in chronic
lymphocytic
leukemia
(CLL). However, not all patients experience deep responses and acquired resistance has already been described.
Jm954
Administrator
in
CLL Support
5 years ago
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