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POST BMT 1-Year & 7 Months, BOY OH BOY!!!
“Ring the bells that still can ring Forget your perfect offering There is a crack, a crack in everything That’s how the light gets in.” Leonard Cohen “Anthem,” The Future album 1992 It has been far to long since my last post but boy have we been through the ringer!! I do want to apologize for
“Ring the bells that still can ring Forget your perfect offering There is a crack, a crack in everything That’s how the light gets in.” Leonard Cohen “Anthem,” The Future album 1992 It has been far to long since my last post but boy have we been through the ringer!! I do want to apologize for
NMMP
in
CLL Support
5 years ago
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
More CAR-T: Looking Back to Go Forward in CAR-T Cell Therapy in R/R CLL
Long-term data from a phase 1 study investigating anti-CD19 chimeric antigen receptor (CAR) T-cell (CAR-T) therapy in patients with R/R CLL showed that the product appeared to be safe, and that prior lymphodepleting chemotherapy is necessary. The data, published in JCI Insight, also brought to the forefront
Long-term data from a phase 1 study investigating anti-CD19 chimeric antigen receptor (CAR) T-cell (CAR-T) therapy in patients with R/R CLL showed that the product appeared to be safe, and that prior lymphodepleting chemotherapy is necessary. The data, published in JCI Insight, also brought to the forefront
Jm954
Administrator
in
CLL Support
5 years ago
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Dr Brian Koffman recent Irish radio interview about CAR T
Dr Brian Koffman and his wife Patty have been very busy over the last few weeks with talks at EHA and for CLL Ireland national information day on June 8th. He also gave his time to be interviewed in Dublin with Newstalk radio to talk about his CLL and CAR T treatment. I'm delighted to be able to share
Dr Brian Koffman and his wife Patty have been very busy over the last few weeks with talks at EHA and for CLL Ireland national information day on June 8th. He also gave his time to be interviewed in Dublin with Newstalk radio to talk about his CLL and CAR T treatment. I'm delighted to be able to share
Irishcll
in
CLL Support
5 years ago
Recent diagnosis
Last November I was diagnosed with T cell large granulocytic
leukaemia
which was a bit of a shock as I have no real symptoms, perhaps I'm a bit tired but who, at 68 yrs, isn't. Anyway I'm on watch and wait which is good. Has anyone else got this? How are you?
Last November I was diagnosed with T cell large granulocytic
leukaemia
which was a bit of a shock as I have no real symptoms, perhaps I'm a bit tired but who, at 68 yrs, isn't. Anyway I'm on watch and wait which is good. Has anyone else got this? How are you?
GrannyTWest
in
CLL Support
5 years ago
Chronic Lymphocytic Leukemia: USA Updates in Diagnosis and Testing
Over the past decade, diagnosis, testing, and prognostic stratification have substantially improved, leading to revisions in guidelines from both the International Workshop on CLL and the National Comprehensive Cancer Network (NCCN). Among the most significant changes is the increasing essential prognostic
Over the past decade, diagnosis, testing, and prognostic stratification have substantially improved, leading to revisions in guidelines from both the International Workshop on CLL and the National Comprehensive Cancer Network (NCCN). Among the most significant changes is the increasing essential prognostic
Jm954
Administrator
in
CLL Support
5 years ago
ED after Leukaemia (CML)
Anyone part of this group had
Leukaemia
and bone marrow transplant and suffered ED?
Anyone part of this group had
Leukaemia
and bone marrow transplant and suffered ED?
Cryptogamia
in
Erectile Dysfunction Support
5 years ago
New Directions in CLL: A Review of 2019 Treatment Guideline Updates in USA
In December 2018, pivotal trial data were presented at the American Society of Hematology Annual Meeting that demonstrated promising results for the first-line treatment of patients with CLL and SLL. In particular, new courses of CLL care in several patient populations emerged from the findings of 3
In December 2018, pivotal trial data were presented at the American Society of Hematology Annual Meeting that demonstrated promising results for the first-line treatment of patients with CLL and SLL. In particular, new courses of CLL care in several patient populations emerged from the findings of 3
Jm954
Administrator
in
CLL 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
Explainer: what’s actually in our blood?
Fortunately for us with CLL, our CLL/SLL cells are quite small - almost as small as red blood cells, hence the name [u]Small[/u] Lymphocytic
Leukaemia
for the variant of CLL/SLL where B-cells are barely present in the blood. Prof.
Fortunately for us with CLL, our CLL/SLL cells are quite small - almost as small as red blood cells, hence the name [u]Small[/u] Lymphocytic
Leukaemia
for the variant of CLL/SLL where B-cells are barely present in the blood. Prof.
AussieNeil
Partner
in
CLL Support
5 years ago
With a CLL diagnosis, knowing more about your immune system could save your life!
This is why: https://healthunlocked.com/cllsupport/posts/144101286/why-with-chronic-lymphocytic-
leukaemia
-cll-white-cell-percentages-can-be-dangerously-misleading.
This is why: https://healthunlocked.com/cllsupport/posts/144101286/why-with-chronic-lymphocytic-
leukaemia
-cll-white-cell-percentages-can-be-dangerously-misleading.
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
ASH 2018: Dr. Lindsey Roeker, on real world use of venetoclax for CLL (chronic lymphocytic leukemia)
Is venetoclax as safe and effective in the real world as compared to clinical trials? Read my ASH interview with Dr. Roeker to get the comforting news: https://cllsociety.org/2019/06/ash-2018-dr-lindsey-roeker-on-real-world-use-of-venetoclax-for-cll-chronic-lymphocytic-leukemia/
Is venetoclax as safe and effective in the real world as compared to clinical trials? Read my ASH interview with Dr. Roeker to get the comforting news: https://cllsociety.org/2019/06/ash-2018-dr-lindsey-roeker-on-real-world-use-of-venetoclax-for-cll-chronic-lymphocytic-leukemia/
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
Lab Visit
B cell and T cell signalling and how they regulate pathways in B and T cell
Leukaemia
and Lymphoma. How Molecular mechanisms control proliferation and survival in malignant lymphocytes and research into developing novel compounds to interfere with key cancer promoting pathways.
B cell and T cell signalling and how they regulate pathways in B and T cell
Leukaemia
and Lymphoma. How Molecular mechanisms control proliferation and survival in malignant lymphocytes and research into developing novel compounds to interfere with key cancer promoting pathways.
retired46
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
Hairy Cell Leukaemia
I was diagnosed with hairy cell
leukaemia
in may 2018. I was treated with cladribine. I gained partial remission in December 2018. After a bone marrow biopsy in March 2019 my
leukaemia
is growing again and I need further treatment.
I was diagnosed with hairy cell
leukaemia
in may 2018. I was treated with cladribine. I gained partial remission in December 2018. After a bone marrow biopsy in March 2019 my
leukaemia
is growing again and I need further treatment.
Sajsingers
in
Leukaemia Support
5 years ago
Upcoming event CLL Ireland National information day June 8th
Confirmed speakers Dr Brian Koffman and Patty Koffman CLL Society Nick York
Leukaemia
Care It's Free to attend but Registration is necessary - go to http://eepurl.com/go9zeL
Confirmed speakers Dr Brian Koffman and Patty Koffman CLL Society Nick York
Leukaemia
Care It's Free to attend but Registration is necessary - go to http://eepurl.com/go9zeL
Irishcll
in
CLL Ireland
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
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