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Jakavi a Janus kinase inhibitor ; does anyone know about this Med for the treatment of CLL
I met someone in the waiting room at MDA and he told me about this medication . He has CLL was Watch a wait a couple of years ago 2011 on this since 2013. He is on a clinical trial. It’s approved for myelofibrosis, but now being used for CLL.
I met someone in the waiting room at MDA and he told me about this medication . He has CLL was Watch a wait a couple of years ago 2011 on this since 2013. He is on a clinical trial. It’s approved for myelofibrosis, but now being used for CLL.
LovecuresCLL
in
CLL Support
5 years ago
Seed and soil: CLL cells and the mesenchymal stromal cells that keep them alive
Please take a look at my interview with him from ASH 2018 https://cllsociety.org/2019/08/ash-2018-dr-neil-kay-on-how-stromal-cells-keep-cll-chronic-
lymphocytic
-
leukemia
-cells-alive-in-the-bone-marrow-and-how-we-can-intervene/ Stay strong. We are all in this together.
Please take a look at my interview with him from ASH 2018 https://cllsociety.org/2019/08/ash-2018-dr-neil-kay-on-how-stromal-cells-keep-cll-chronic-
lymphocytic
-
leukemia
-cells-alive-in-the-bone-marrow-and-how-we-can-intervene/ Stay strong. We are all in this together.
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
CLL Trials Updates from European Haematology Association Meeting 2019
Patrick Thornton, MD, Beaumont Hospital, Dublin, Ireland, tells us about some of the excellent CLL updates presented at the 24th Congress of the European Hematology Association (EHA) 2019, held in Amsterdam. Dr Thornton discusses a variety of updates, such as bringing novel agents into the frontline
Patrick Thornton, MD, Beaumont Hospital, Dublin, Ireland, tells us about some of the excellent CLL updates presented at the 24th Congress of the European Hematology Association (EHA) 2019, held in Amsterdam. Dr Thornton discusses a variety of updates, such as bringing novel agents into the frontline
Jm954
Administrator
in
CLL Support
5 years ago
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Flu vaccine while taking 20mg Jakafi
Has anyone here gotten the flu vaccine this year while on 20mg Jakafi
Has anyone here gotten the flu vaccine this year while on 20mg Jakafi
rkhabtec
in
MPN Voice
5 years ago
Ibrutinib Shown to Cross the Blood-Brain Barrier in CNS Lymphoma
CNS CLL is very rare but this is good news for those unfortunate to have it. At 560mg it's a higher dose than CLL patients would normally have but necessary to get a good concentration in the CSF. More information here: https://www.cancertherapyadvisor.com/home/cancer-topics/lymphoma/cns-lymphoma-ibrutinib-shown-to-cross-blood-brain-barrier
CNS CLL is very rare but this is good news for those unfortunate to have it. At 560mg it's a higher dose than CLL patients would normally have but necessary to get a good concentration in the CSF. More information here: https://www.cancertherapyadvisor.com/home/cancer-topics/lymphoma/cns-lymphoma-ibrutinib-shown-to-cross-blood-brain-barrier
Jm954
Administrator
in
CLL Support
5 years ago
Bi clonal CLL
When diagnosed with CLL in May 2018, the FISH test reported I have 2 different B cells that are multiplying, making my CLL bi clonal instead of mono clonal. I wish I could get feedback on others results of their bi clonal CLL. The test results said that my time to treatment may be shorter, but nothing
When diagnosed with CLL in May 2018, the FISH test reported I have 2 different B cells that are multiplying, making my CLL bi clonal instead of mono clonal. I wish I could get feedback on others results of their bi clonal CLL. The test results said that my time to treatment may be shorter, but nothing
wcm242
in
CLL Support
5 years ago
ASH 2018: Dr. Chadi Nabhan on the Cost of Ibrutinib vs. Chemo vs Chemoimmunotherapy in CLL and on way too much chemo being used.
Here is the link my ASH 2018 interview: https://cllsociety.org/2019/08/ash-2018-dr-chadi-nabhan-on-the-cost-of-ibrutinib-vs-chemo-vs-chemoimmunotherapy-in-cll-chronic-
lymphocytic
-
leukemia
/ I have more coming from Dr. Nabhan from ASH soon.
Here is the link my ASH 2018 interview: https://cllsociety.org/2019/08/ash-2018-dr-chadi-nabhan-on-the-cost-of-ibrutinib-vs-chemo-vs-chemoimmunotherapy-in-cll-chronic-
lymphocytic
-
leukemia
/ I have more coming from Dr. Nabhan from ASH soon.
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
Any news,trials or progress on use of CAR T-cell therapy for Myelofibrosis or related conditions?
A true breakthrough in several diseases , especially cancers eg Leukemia. Costly ( $1m per treatment) but costs will decline . This is the use of your own (tweaked) immune suppression systems to fight cancers.( see TED Talks etc).
A true breakthrough in several diseases , especially cancers eg Leukemia. Costly ( $1m per treatment) but costs will decline . This is the use of your own (tweaked) immune suppression systems to fight cancers.( see TED Talks etc).
Innessant
in
MPN Voice
5 years ago
Critical Molecular Pathways in CLL Therapy
This is an overview of where we are in CLL treatment and where the research may be most needed at this point in time. Lengthy, with good illus. and delineates targets of current treatments. https://molmed.biomedcentral.com/articles/10.1186/s10020-018-0001-1 Sorry, if this is a duplicate. Conclusion
This is an overview of where we are in CLL treatment and where the research may be most needed at this point in time. Lengthy, with good illus. and delineates targets of current treatments. https://molmed.biomedcentral.com/articles/10.1186/s10020-018-0001-1 Sorry, if this is a duplicate. Conclusion
cllady01
Volunteer
in
CLL Support
5 years ago
One Day at a Time
Hi CLL People, It's been a while since I posted (4 years while to be more precise) and in that time I've been doing exactly as above - taking it 1 day at a time. I have little to report - my bloods have remained pretty constant and my hospital doctor (I have no Consultant) said at our last meeting that
Hi CLL People, It's been a while since I posted (4 years while to be more precise) and in that time I've been doing exactly as above - taking it 1 day at a time. I have little to report - my bloods have remained pretty constant and my hospital doctor (I have no Consultant) said at our last meeting that
mister_Ian_NE
in
CLL Support
5 years ago
“CLL & Heartburn” ??
Weird question but ... the original way I was diagnosed with CLL was because I was having some very strange “heart burn” type of symptoms. And my doctor did a range of test - thyroid, barium swallow & a CBC - everything came back ok except a small amount of acid reflux in the barium swallow & my WCC
Weird question but ... the original way I was diagnosed with CLL was because I was having some very strange “heart burn” type of symptoms. And my doctor did a range of test - thyroid, barium swallow & a CBC - everything came back ok except a small amount of acid reflux in the barium swallow & my WCC
Meamiaam10
in
CLL Support
5 years ago
Two history lessons- the first on 50 years of treating CLL and the 2nd on cellular therapies including transplant and CAR-T
Hoffbrand https://cllsociety.org/2019/07/ash-2018-professor-hoffbrand-on-50-years-of-treating-cll-chronic-
lymphocytic
-
leukemia
/ that offers a remarkable overview of CLL treatment over 1/2 a century and also the history and much more on cellular therapies including CAR-T by Dr.
Hoffbrand https://cllsociety.org/2019/07/ash-2018-professor-hoffbrand-on-50-years-of-treating-cll-chronic-
lymphocytic
-
leukemia
/ that offers a remarkable overview of CLL treatment over 1/2 a century and also the history and much more on cellular therapies including CAR-T by Dr.
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
Blood work with a possible change in doctor's
I don't post on here very often so here goes. I started a new GP and Oncologist/Hematologist this year. Prior doctor allowed phlebotomy when HCT was at 44.6. My last phlebotomy was done in January and the one before that was in October. Before that I was getting them on the average of every 6 to 8
I don't post on here very often so here goes. I started a new GP and Oncologist/Hematologist this year. Prior doctor allowed phlebotomy when HCT was at 44.6. My last phlebotomy was done in January and the one before that was in October. Before that I was getting them on the average of every 6 to 8
Alex9621
in
MPN Voice
5 years ago
Test result meaning
Just a question on of my results. The last two land shows a lot of things out of whack. But one is anion gap with a reading of 2 and LL which is critical (panic). I was diagnosed with CLL in February 2018. Started Gayza in September thru December. Was about 16 treatments. Labs did not improve. I have
Just a question on of my results. The last two land shows a lot of things out of whack. But one is anion gap with a reading of 2 and LL which is critical (panic). I was diagnosed with CLL in February 2018. Started Gayza in September thru December. Was about 16 treatments. Labs did not improve. I have
Mamawof25
in
CLL Support
5 years ago
Help with anemia
I have Myelofibrosis with hemolytic anemia. Haven’t started Jakafi. Spleen is starting to enlarge. Any ideas of how to control the anemia while taking Jakafi?
I have Myelofibrosis with hemolytic anemia. Haven’t started Jakafi. Spleen is starting to enlarge. Any ideas of how to control the anemia while taking Jakafi?
Jerrymohler
in
MPN Voice
5 years ago
Low Dose Thalidomide
My haemo has floated the idea of low dose thalidomide in combination with prednisone as a potential treatment for my advanced myelofibrosis. I have read a couple of articles on the net which suggest quite a good response in reducing anemia and increasing platelets. Has anyone had experience with this
My haemo has floated the idea of low dose thalidomide in combination with prednisone as a potential treatment for my advanced myelofibrosis. I have read a couple of articles on the net which suggest quite a good response in reducing anemia and increasing platelets. Has anyone had experience with this
47Robert
in
MPN Voice
5 years ago
Adding Venetoclax to Obinutuzumab Prolongs Progression-Free Survival in Previously Untreated CLL
[i]Dated 1st September 2019[/i] In a phase III trial of patients with previously untreated CLL a
nd co-existing comorbidities, a fixed-duration regimen
of obinutuzumab plus venetoclax reduced the risk of disease progression and death by 65%, compared with obinutuzumab plus chlorambucil. The findings
[i]Dated 1st September 2019[/i] In a phase III trial of patients with previously untreated CLL a
nd co-existing comorbidities, a fixed-duration regimen
of obinutuzumab plus venetoclax reduced the risk of disease progression and death by 65%, compared with obinutuzumab plus chlorambucil. The findings
Jm954
Administrator
in
CLL Support
5 years ago
Using nanopore sequencing to look at the diagnostic CLL genome.
This is a bit sciencie but might be of interest to some and looks promising technology, allowing several things to be tested for at the same time. [i]Nanopore sequencing is a third generation approach used in the sequencing of biopolymers in the form of DNA or RNA. Using nanopore sequencing, a single
This is a bit sciencie but might be of interest to some and looks promising technology, allowing several things to be tested for at the same time. [i]Nanopore sequencing is a third generation approach used in the sequencing of biopolymers in the form of DNA or RNA. Using nanopore sequencing, a single
Jm954
Administrator
in
CLL Support
5 years ago
Oncoplex Cancer Gene Panel test
I just got the results of 2 new tests back. One is called an Oncoplex Cancer Gene Panel and the results said : “The sample tested is positive for copy loss of portions of chromosome 5 (includes CD74 and RPS14) and a low level variant in ASLX1 “ I trie to look this up, but was confused by the article
I just got the results of 2 new tests back. One is called an Oncoplex Cancer Gene Panel and the results said : “The sample tested is positive for copy loss of portions of chromosome 5 (includes CD74 and RPS14) and a low level variant in ASLX1 “ I trie to look this up, but was confused by the article
t2aa
in
CLL Support
5 years ago
Scoring System for the Risk of Heart Problems in CLL Patients Treated with Ibrutinib: An Italian Model
“I hadn’t thought of it before, but it’s a great idea” More here: https://www.cancertherapyadvisor.com/home/cancer-topics/chronic-
lymphocytic
-
leukemia
/chronic-leukemia-cll-scoring-risk-for-heart-problems/ Jackie
“I hadn’t thought of it before, but it’s a great idea” More here: https://www.cancertherapyadvisor.com/home/cancer-topics/chronic-
lymphocytic
-
leukemia
/chronic-leukemia-cll-scoring-risk-for-heart-problems/ Jackie
Jm954
Administrator
in
CLL Support
5 years ago
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