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My CLL and CAR-T story
Hi, Many of you may know my story but if you want to hear me tell it when I am the one being interviewed at ASH by my good friend Giora Sharf, a strong and experienced blood cancer advocate and CML patient, you can watch here: https://cllsociety.org/2019/08/ash-2018-interview-of-dr-koffman-by-giora-sharf
Hi, Many of you may know my story but if you want to hear me tell it when I am the one being interviewed at ASH by my good friend Giora Sharf, a strong and experienced blood cancer advocate and CML patient, you can watch here: https://cllsociety.org/2019/08/ash-2018-interview-of-dr-koffman-by-giora-sharf
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
Greetings from Chaya Venkat <chaya@clltopics.net>
Greetings: It has been a long time and I hope this email still finds some of you and you still recognize my name. Please allow me to impose on you just a tad – this will not take long. As you knew, we planned to keep all three of our websites (CLL Topics flagship site, Updates and Harvey’s Journal
Greetings: It has been a long time and I hope this email still finds some of you and you still recognize my name. Please allow me to impose on you just a tad – this will not take long. As you knew, we planned to keep all three of our websites (CLL Topics flagship site, Updates and Harvey’s Journal
lankisterguy
Volunteer
in
CLL Support
5 years ago
CLL Society New York City Support Group Meeting Sunday August 18, 2019 3:00pm
CLL PATIENT AND CAREGIVER SUPPORT GROUP New York City -- CLL Patient Support Group The CLL Society invites you to our support group sponsored by the CLL Society Support & Education Network. Please join us August 18 at 3:00pm. Emilee Thomas PA at Weill Cornell Medicine will be our guest. She will join
CLL PATIENT AND CAREGIVER SUPPORT GROUP New York City -- CLL Patient Support Group The CLL Society invites you to our support group sponsored by the CLL Society Support & Education Network. Please join us August 18 at 3:00pm. Emilee Thomas PA at Weill Cornell Medicine will be our guest. She will join
lankisterguy
Volunteer
in
CLL Support
5 years ago
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A phase 2 study of ruxolitinib in combination with azacitidine in patients with myelofibrosis
Sounds very encouraging http://www.bloodjournal.org/content/132/16/1664
Sounds very encouraging http://www.bloodjournal.org/content/132/16/1664
Paul123456
in
MPN Voice
5 years ago
Combining Pegasys and ruxolitinib (Jakafi) for MF: has anyone tried it?
Hi. I'm having a grim time at present, as the increased risk of aggressive skin cancers triggered by the ruxolitinib I’m taking ( was inc to 20mg bd at end December to help the fatigue ( it didn’t) ( now back to 15mg bd) haunts me. I’ve already had one SCC excised from my face, as I’d posted, and a
Hi. I'm having a grim time at present, as the increased risk of aggressive skin cancers triggered by the ruxolitinib I’m taking ( was inc to 20mg bd at end December to help the fatigue ( it didn’t) ( now back to 15mg bd) haunts me. I’ve already had one SCC excised from my face, as I’d posted, and a
Rachelthepotter
in
MPN Voice
5 years ago
Chimeric antigen receptor-modified T cell therapy in chronic lymphocytic leukemia
[i]Journal of Hematology & Oncology, November 2018[/i] CAR-T therapy, a promising adoptive T cell immunotherapy, has become more and more important in the treatment of CLL. In the last 2 years, enormous progress has been witnessed in CAR-T therapy for CLL. However, no comprehensive review had been reported
[i]Journal of Hematology & Oncology, November 2018[/i] CAR-T therapy, a promising adoptive T cell immunotherapy, has become more and more important in the treatment of CLL. In the last 2 years, enormous progress has been witnessed in CAR-T therapy for CLL. However, no comprehensive review had been reported
Jm954
Administrator
in
CLL Support
5 years ago
ASH 2018: Dr. Lindsey Roeker research from ASH 2018 on real world use of venetoclax for CLL
Lindsey Roeker research from ASH 2018 on real world use of venetoclax for CLL: Turns out venetoclax works as well in the community as not does in trial: For more see: https://cllsociety.org/2019/06/ash-2018-dr-lindsey-roeker-on-real-world-use-of-venetoclax-for-cll-chronic-
lymphocytic
-
leukemia
/ Stay strong
Lindsey Roeker research from ASH 2018 on real world use of venetoclax for CLL: Turns out venetoclax works as well in the community as not does in trial: For more see: https://cllsociety.org/2019/06/ash-2018-dr-lindsey-roeker-on-real-world-use-of-venetoclax-for-cll-chronic-
lymphocytic
-
leukemia
/ Stay strong
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
Results cml myeloproliferative
Hi anyone give any advice Had results of jak2 test as unequivocal, doctor seemed this was good news , still further testing raised iron and platelets Another jak2 test scheduled in six months time . Just not sure how to interpret the findings Many thanks
Hi anyone give any advice Had results of jak2 test as unequivocal, doctor seemed this was good news , still further testing raised iron and platelets Another jak2 test scheduled in six months time . Just not sure how to interpret the findings Many thanks
JDHD1
in
Leukaemia Support
5 years ago
Newly approved
https://www.pharmacytimes.com/news/combination-therapy-granted-fda-approval-for-untreated-chronic-
lymphocytic
-
leukemia
https://www.pharmacytimes.com/news/combination-therapy-granted-fda-approval-for-untreated-chronic-
lymphocytic
-
leukemia
Survivor1951
in
CLL Support
5 years ago
Extreme fatigue
Hi I may have questioned this before at an earlier time but it is still a big concern. My partner has post ET myelofibrosis. (ET for 5 years, diagnosed with myelofibrosis in April this year) He was taking hydroxycarbamide (not sure if I have spelt this right) for his ET and was started on Rux for
Hi I may have questioned this before at an earlier time but it is still a big concern. My partner has post ET myelofibrosis. (ET for 5 years, diagnosed with myelofibrosis in April this year) He was taking hydroxycarbamide (not sure if I have spelt this right) for his ET and was started on Rux for
Goldfish212
in
MPN Voice
5 years ago
CLL with with WBC over 100,000
This is my first post. I was diagnosed with small B-cell CLL in 2009, at the Cleveland Clinic. The doctor thought he was reassuring me by saying, "I have seen patients live ten years with CLL." I have no symptoms at all but in the last 12 months, my WBC has gone from 12,000 to 101,900, with a jump
This is my first post. I was diagnosed with small B-cell CLL in 2009, at the Cleveland Clinic. The doctor thought he was reassuring me by saying, "I have seen patients live ten years with CLL." I have no symptoms at all but in the last 12 months, my WBC has gone from 12,000 to 101,900, with a jump
Saber21
in
CLL Support
5 years ago
Nulasta and a large Spleen
My husband came home from the Hospital last night. He had two treatments of Gayzena (sp) Now he is has another due on Friday. They are ant him to come in today and he Nulasta . I’m worried about the whole thing he is exhausted, large spleen, low blood pressure and low Neuriphills. I read that a side
My husband came home from the Hospital last night. He had two treatments of Gayzena (sp) Now he is has another due on Friday. They are ant him to come in today and he Nulasta . I’m worried about the whole thing he is exhausted, large spleen, low blood pressure and low Neuriphills. I read that a side
AuntHelen
in
CLL Support
5 years ago
LGL Leukaemia
Has anyone been diagnosed with large granular lymphocytic leukaemia, if so I'd love to hear from you.
Has anyone been diagnosed with large granular lymphocytic leukaemia, if so I'd love to hear from you.
GrannyTWest
in
CLL Support
5 years ago
Information on CLL
For more information on chronic
lymphocytic
leukemia
(CLL), visit: https://www.patientpower.info/chronic-
lymphocytic
-
leukemia
For more information on chronic
lymphocytic
leukemia
(CLL), visit: https://www.patientpower.info/chronic-
lymphocytic
-
leukemia
MaddieHU
HealthUnlocked
in
CLL America Support
5 years ago
With a CLL diagnosis, knowing more about your immune system could save your life!
ref=pdf_download&fr=RR-2&rr=7ea8ebb438ab2efa Table 1 in this article provides a useful reference of [i]Drugs and regimens used in the treatment of chronic
lymphocytic
leukemia
and the risk of infection.
ref=pdf_download&fr=RR-2&rr=7ea8ebb438ab2efa Table 1 in this article provides a useful reference of [i]Drugs and regimens used in the treatment of chronic
lymphocytic
leukemia
and the risk of infection.
AussieNeil
Partner
in
CLL Support
5 years ago
Infrared sauna
Hi Everyone , I am going to a spa next month and wanted feedback on whether an infrared sauna or certain massages or wraps (seaweed ,mud, ) were off limits to those of us with CLL. Thanks
Hi Everyone , I am going to a spa next month and wanted feedback on whether an infrared sauna or certain massages or wraps (seaweed ,mud, ) were off limits to those of us with CLL. Thanks
nitram120
in
CLL Support
5 years ago
Myelofibrosis
Just wondering if anyone has a diagnosis of advanced or progressive post ET myelofibrosis. My partner was diagnosed a few months ago (ET diagnosed in 2016) with myelofibrosis. Since then he has been hospitalised with pneumonia and required potassium and a four units of blood. He was then discharged
Just wondering if anyone has a diagnosis of advanced or progressive post ET myelofibrosis. My partner was diagnosed a few months ago (ET diagnosed in 2016) with myelofibrosis. Since then he has been hospitalised with pneumonia and required potassium and a four units of blood. He was then discharged
Goldfish212
in
MPN Voice
5 years ago
FDA Frontline Approval of Venetoclax and Obinituzumab in the USA
For more on this important development, please see: https://cllsociety.org/2019/05/fda-approved-venetoclax-in-combination-with-obinutuzumab-for-the-treatment-of-people-with-previously-untreated-chronic-
lymphocytic
-
leukemia
-cll-or-small-
lymphocytic
-lymphoma-sll/ This is a big deal. Brian
For more on this important development, please see: https://cllsociety.org/2019/05/fda-approved-venetoclax-in-combination-with-obinutuzumab-for-the-treatment-of-people-with-previously-untreated-chronic-
lymphocytic
-
leukemia
-cll-or-small-
lymphocytic
-lymphoma-sll/ This is a big deal. Brian
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
Experience with Fludarabine & Rituximab?
Hi, My mom (now 62 yrs old) was diagnosed with CLL about 5+ yrs ago, and her doctor recently told her that she needs to begin treatment. He recommended her to begin with combination of Rituximab + Fludarabine (in-patient treatment, via injections). I just wanted to know if anyone else has received this
Hi, My mom (now 62 yrs old) was diagnosed with CLL about 5+ yrs ago, and her doctor recently told her that she needs to begin treatment. He recommended her to begin with combination of Rituximab + Fludarabine (in-patient treatment, via injections). I just wanted to know if anyone else has received this
Dolce1
in
CLL Support
5 years ago
Tiredness
Hi have had Myelofibrosis for 10 years I don’t know anyone else who has this feel so tired my legs ache feel as if I have the flu all the time 😩thanks Diana
Hi have had Myelofibrosis for 10 years I don’t know anyone else who has this feel so tired my legs ache feel as if I have the flu all the time 😩thanks Diana
D1i2a3
in
MPN Voice
5 years ago
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