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Zanubrutinib-Gazyva Shows Promise for CLL/SLL
June 25, 2019 Zanubrutinib (BGB-3111) is an investigational small molecule inhibitor of Bruton’s tyrosine kinase (BTK). Gazyva is a monoclonal antibody designed to bind to CD20, a protein found on the surface of certain types of B cells, including malignant CLL or SLL cells. The safety and efficacy
June 25, 2019 Zanubrutinib (BGB-3111) is an investigational small molecule inhibitor of Bruton’s tyrosine kinase (BTK). Gazyva is a monoclonal antibody designed to bind to CD20, a protein found on the surface of certain types of B cells, including malignant CLL or SLL cells. The safety and efficacy
Jm954
Administrator
in
CLL Support
5 years ago
The Summer edition of Leukaemia Matters is now on its way to doorsteps and inboxes!
Welcome to the Summer issue of our magazine!
Read more about the activities of Leukaemia Care and patients over the past months and plans moving forward here: https://www.leukaemiacare.org.uk/wp-content/uploads/Leukaemia-Matters-Summer-2019-Web-Version.pdf From the Chair: [i]Here at
Welcome to the Summer issue of our magazine!
Read more about the activities of Leukaemia Care and patients over the past months and plans moving forward here: https://www.leukaemiacare.org.uk/wp-content/uploads/Leukaemia-Matters-Summer-2019-Web-Version.pdf From the Chair: [i]Here at
HAIRBEAR_UK
in
Leukaemia Support
5 years ago
Exposure to Glyphosate (Round Up)? Any one believe this could be a factor in developing Non Hodgkins Lymphoma?
In my 20s, 30s, 40s and early 50s, I used Round Up intermittently in my gardens as Round Up was my go to treatment for controlling weeds. In hindsight, not such a good choice. But at the time, I thought this product is great! I just spray it on the weeds and in the next days the weeds die. Easy Peezy
In my 20s, 30s, 40s and early 50s, I used Round Up intermittently in my gardens as Round Up was my go to treatment for controlling weeds. In hindsight, not such a good choice. But at the time, I thought this product is great! I just spray it on the weeds and in the next days the weeds die. Easy Peezy
MrsMaggoo
in
CLL Support
5 years ago
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Move over MRD Negative and make way for uMRD - Undetectable Minimal Residual Disease
As Dr Brian Koffman mentioned here: https://healthunlocked.com/cllsupport/posts/141000734/eha part of his contribution to the European Hematology Association (EHA) 2019 Amsterdam congress https://ehaweb.org was as a panel member on a satellite event sponsored by the MRD Testing Collaborative, namely
As Dr Brian Koffman mentioned here: https://healthunlocked.com/cllsupport/posts/141000734/eha part of his contribution to the European Hematology Association (EHA) 2019 Amsterdam congress https://ehaweb.org was as a panel member on a satellite event sponsored by the MRD Testing Collaborative, namely
AussieNeil
Partner
in
CLL Support
5 years ago
Good news!
So I went to the hematologist today and for the first time in years my platelets were at normal levels. But my anemia is getting worse. He took me off hydroxyurea which I’ve been taking every day for over over 11 years. I also take 20 mgs of Jakafi every day. I have ET Jak2 positive and PV. Any thoughts
So I went to the hematologist today and for the first time in years my platelets were at normal levels. But my anemia is getting worse. He took me off hydroxyurea which I’ve been taking every day for over over 11 years. I also take 20 mgs of Jakafi every day. I have ET Jak2 positive and PV. Any thoughts
Cja1956
in
MPN Voice
5 years ago
Diagnosis for insurance
Hi all I've been trying to sort insurance for my holiday. I explained I have Essential thrombocytosis jak2 +. I tried to explain it comes under the unbrella of a myeloproliferative neoplasm which the operator didn't understand? He asked me if I had essential thromobythaemia and I said my diagnosis is
Hi all I've been trying to sort insurance for my holiday. I explained I have Essential thrombocytosis jak2 +. I tried to explain it comes under the unbrella of a myeloproliferative neoplasm which the operator didn't understand? He asked me if I had essential thromobythaemia and I said my diagnosis is
Camelian
in
MPN Voice
5 years ago
Efficacy of venetoclax monotherapy in patients with relapsed CLL in the post‐BCR inhibitor setting: a UK wide analysis
Feb 2019 Venetoclax is a BCL2 inhibitor with activity in relapsed/refractory (R/R) chronic lymphocytic leukaemia (CLL). We conducted a multi‐centre retrospective analysis of 105 R/R CLL patients who received venetoclax pre‐National Health Service commissioning. The median age was 67 years and median
Feb 2019 Venetoclax is a BCL2 inhibitor with activity in relapsed/refractory (R/R) chronic lymphocytic leukaemia (CLL). We conducted a multi‐centre retrospective analysis of 105 R/R CLL patients who received venetoclax pre‐National Health Service commissioning. The median age was 67 years and median
Jm954
Administrator
in
CLL Support
5 years ago
Starting my diagnostic journey
Hello. So glad to find this resource. I am a 68 year old woman in excellent general health. Yet I just learned two weeks ago that I have CLL, probably SLL. I’ve been working with a wonderful hematologist in nyc and hope to be seen soon at Sloan Kettering and Weill Cornell. Today my doctor said that my
Hello. So glad to find this resource. I am a 68 year old woman in excellent general health. Yet I just learned two weeks ago that I have CLL, probably SLL. I’ve been working with a wonderful hematologist in nyc and hope to be seen soon at Sloan Kettering and Weill Cornell. Today my doctor said that my
Sunfishjoy
in
CLL Support
5 years ago
Bendamustine and Rituximab and liver toxicity
My first round of BR went fine with no change in liver numbers. My ALT and AST are usually under 20. Three days after my second round they were slightly over 20, 5 days after the second round they were close to 40, and 10 days after the second round (today) they are over 100, which concerns me. Has anyone
My first round of BR went fine with no change in liver numbers. My ALT and AST are usually under 20. Three days after my second round they were slightly over 20, 5 days after the second round they were close to 40, and 10 days after the second round (today) they are over 100, which concerns me. Has anyone
profrich
in
CLL Support
5 years ago
High MCV
Hi, I have PV and being treated with hydroxycarbamide 1000/1500mg alternate days. This seems to be keeping main bloods under control apart from a steady increase in my MCV level. When I last saw my haematologist 3 months ago he was very relaxed about it, saying it was only to be expected when on hydroxycarbamide
Hi, I have PV and being treated with hydroxycarbamide 1000/1500mg alternate days. This seems to be keeping main bloods under control apart from a steady increase in my MCV level. When I last saw my haematologist 3 months ago he was very relaxed about it, saying it was only to be expected when on hydroxycarbamide
paddy67
in
MPN Voice
5 years ago
Bendamustine and Rituximab and Low Lymphocyte Count
After two sessions of B and R my ALC is 0.23. It went as low as 0.03 soon after the first session. I don't know whether such low numbers are good or bad. Does anyone else on B and R have anything to say about this? What number do we want?
After two sessions of B and R my ALC is 0.23. It went as low as 0.03 soon after the first session. I don't know whether such low numbers are good or bad. Does anyone else on B and R have anything to say about this? What number do we want?
profrich
in
CLL Support
5 years ago
I’ve had Polycythemia Vera for 10 years. Dr. suspects it is turning into Myleofibrosis
Good morning. I was diagnosed about 10 years ago with Polycythemia Vera. I am Jak2 positive. I was prescribed hydroxyurea and one low-dose aspirin a day. I also had phlebotomies when my hematocrit was over 42. Recently my hematologist felt like my polycythemia vera May be changing into Myleofibrosis.
Good morning. I was diagnosed about 10 years ago with Polycythemia Vera. I am Jak2 positive. I was prescribed hydroxyurea and one low-dose aspirin a day. I also had phlebotomies when my hematocrit was over 42. Recently my hematologist felt like my polycythemia vera May be changing into Myleofibrosis.
Cknight6
in
MPN Voice
5 years ago
High Red Blood counts neg. Jak2 and all mutation tests
I have been diagnosed with primary polycythemia because all of my red blood counts were all quite high. My platelets were normal but monocytes were high and mutation tests came back negative. I’m scheduled to see hematologist in a month, it’s frustrating! I read that sometimes mutation ie jak2 sometimes
I have been diagnosed with primary polycythemia because all of my red blood counts were all quite high. My platelets were normal but monocytes were high and mutation tests came back negative. I’m scheduled to see hematologist in a month, it’s frustrating! I read that sometimes mutation ie jak2 sometimes
Cali-Med
in
MPN Voice
5 years ago
Jakafi
Diagnosed with myelofibrosis on 10/17. Began jakafi 3 weeks ago. Platelets went down to 80 and doctor told me to stop jakafi. Did that last night and experienced terrible stomach intestinal problems this morning. Has anyone out there had same experience?
Diagnosed with myelofibrosis on 10/17. Began jakafi 3 weeks ago. Platelets went down to 80 and doctor told me to stop jakafi. Did that last night and experienced terrible stomach intestinal problems this morning. Has anyone out there had same experience?
USSpurdy
in
MPN Voice
5 years ago
Have you been diagnosed with acute leukaemia? Share your experience in a global quality of life survey and help drive improvements in Care.
ALAN - The Acute Leukaemia Advocates Network is an international group of patient advocates and charities supporting patients in their own countries who live with an acute leukaemia diagnosis. The network's steering committee is chaired by our own Advocacy Director at Leukaemia Care There is an urgent
ALAN - The Acute Leukaemia Advocates Network is an international group of patient advocates and charities supporting patients in their own countries who live with an acute leukaemia diagnosis. The network's steering committee is chaired by our own Advocacy Director at Leukaemia Care There is an urgent
HAIRBEAR_UK
in
Leukaemia Support
5 years ago
We eat what we are – let’s detoxify the word ‘chemical’
The only thing chemical free is a perfect vacuum. [i]"Food is a bunch of chemicals, nothing more, nothing less. When we eat, we eat chemicals. Some are simple, such as water or salt. Some are complex, such as the proteins in steak. But they’re all chemicals. There is no part of food that is not chemical
The only thing chemical free is a perfect vacuum. [i]"Food is a bunch of chemicals, nothing more, nothing less. When we eat, we eat chemicals. Some are simple, such as water or salt. Some are complex, such as the proteins in steak. But they’re all chemicals. There is no part of food that is not chemical
AussieNeil
Partner
in
CLL Support
5 years ago
UK CLL Clinical Trial Portfolio updated May 2019
The Portfolio of clinical trials available in the UK has been updated and is available on the main site. Thanks to Garry for helping to prepare this for us https://www.cllsupport.org.uk/article/uk-cll-clinical-trials-portfolio-may-2019
The Portfolio of clinical trials available in the UK has been updated and is available on the main site. Thanks to Garry for helping to prepare this for us https://www.cllsupport.org.uk/article/uk-cll-clinical-trials-portfolio-may-2019
Myrddin
in
CLL Support
5 years ago
Cheap Ibrutinib for B Cell Prolymphocitic Leukemia Patient in Pakistan
My father was diagnosed with B Cell Prolymphocitic Leukemia in March 2017. He received 6 Cycles of Chemotherapy (Rituximab+Bendamestine). Last cycle was received in January 2018. Now the disease has relapsed and doctor has advised Ibrutinib. In Pakistan Ibrutinib costs Pakistani Rupees 200,000/- per
My father was diagnosed with B Cell Prolymphocitic Leukemia in March 2017. He received 6 Cycles of Chemotherapy (Rituximab+Bendamestine). Last cycle was received in January 2018. Now the disease has relapsed and doctor has advised Ibrutinib. In Pakistan Ibrutinib costs Pakistani Rupees 200,000/- per
B-PLL_Pakistan
in
Leukaemia Support
5 years ago
Cheap Ibrutinib for B Cell Prolymphocitic Leukemia Patient in Pakistan
My father was diagnosed with B Cell Prolymphocitic Leukemia in March 2017. He received 6 Cycles of Chemotherapy (Rituximab+Bendamestine). Last cycle was received in January 2018. Now the disease has relapsed and doctor has advised Ibrutinib. In Pakistan Ibrutinib costs Pakistani Rupees 200,000/- per
My father was diagnosed with B Cell Prolymphocitic Leukemia in March 2017. He received 6 Cycles of Chemotherapy (Rituximab+Bendamestine). Last cycle was received in January 2018. Now the disease has relapsed and doctor has advised Ibrutinib. In Pakistan Ibrutinib costs Pakistani Rupees 200,000/- per
B-PLL_Pakistan
in
CLL Support
5 years ago
What is the rate for someone with ET to progress to myelofibrosis?
I have slight increase in platelets and mild splenomegaly. My hematologist gave me 15% rate for progression to ET. Does anyone else has a percentage given from their hematologist?
I have slight increase in platelets and mild splenomegaly. My hematologist gave me 15% rate for progression to ET. Does anyone else has a percentage given from their hematologist?
Aneliv9
in
MPN Voice
5 years ago
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