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New haem, new diagnosis?
Hi Guys, just a quick update. On bus travelling home after a worthwhile consult with new haem yesterday. It turns out I may not have polycythemia Vera but a different version. Think filled up 8 tubes of blood tests and go back in 6 weeks to get all results. At last someone has listened and was so
Hi Guys, just a quick update. On bus travelling home after a worthwhile consult with new haem yesterday. It turns out I may not have polycythemia Vera but a different version. Think filled up 8 tubes of blood tests and go back in 6 weeks to get all results. At last someone has listened and was so
Aime
in
MPN Voice
6 years ago
Dr. I. Flinn...Recognizing the Side Effects of Newly Approved CLL Therapies
Today we are discussing the management of patients with chronic lymphocytic leukemia (CLL), including incorporating the newest approved therapies for CLL: duvelisib and venetoclax. We are joined by Dr. Ian Flinn, a hematologist/oncologist and the director of the Blood Cancer Research Program at Sarah
Today we are discussing the management of patients with chronic lymphocytic leukemia (CLL), including incorporating the newest approved therapies for CLL: duvelisib and venetoclax. We are joined by Dr. Ian Flinn, a hematologist/oncologist and the director of the Blood Cancer Research Program at Sarah
Cllcanada
Top Poster CURE Hero
in
CLL Support
6 years ago
LLS Ask the Doctor New York City- Dr. Anthony Mato Dinner Meeting Dec 12, 2018
http://support.lymphoma.org/site/MessageViewer?em_id=3116.0&dlv_id=6484 Ask the Doctor – New York, NY Free Educational Program for Lymphoma Patients, Survivors and Caregivers Date and Time: Wednesday, December 12, 2018 Location: DoubleTree by Hilton, Metropolitan - NYC 569 Lexington Avenue
http://support.lymphoma.org/site/MessageViewer?em_id=3116.0&dlv_id=6484 Ask the Doctor – New York, NY Free Educational Program for Lymphoma Patients, Survivors and Caregivers Date and Time: Wednesday, December 12, 2018 Location: DoubleTree by Hilton, Metropolitan - NYC 569 Lexington Avenue
lankisterguy
Volunteer
in
CLL Support
6 years ago
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Light the Night Australia..Walk Locations
The Australian
Leukaemia
Foundation includes these special fund raising events between September and November annually.
The Australian
Leukaemia
Foundation includes these special fund raising events between September and November annually.
AussieNeil
Partner
in
CLL Support
6 years ago
Ruxolitinib for Polycythemia Vera
I am 77years old. I was diagnosed with Polycythemia Vera in Dec 2005 (JAK2+) and had symptoms including visual disturbances for about 2 years before this. I have taken Hydroxicarbimide over the years the dose increasing from 8-500mg capsules per week in 2005 to 11-500mg per week today. I see my haematologist
I am 77years old. I was diagnosed with Polycythemia Vera in Dec 2005 (JAK2+) and had symptoms including visual disturbances for about 2 years before this. I have taken Hydroxicarbimide over the years the dose increasing from 8-500mg capsules per week in 2005 to 11-500mg per week today. I see my haematologist
SirKitBored
in
MPN Voice
6 years ago
MF, Jakafi, and Osteosclerosis
Hi everyone, I was diagnosed with MF post PV since 4 months, in my last BM biopsy it states MF3 for bone fibrosis and the Osteosclerosis is obvious now. My set of questions are: 1- Does Jakafi hinder or slow the Osteosclerosis down? 2- Can this Osteosclerosis retract somehow after the HCT (Transplant
Hi everyone, I was diagnosed with MF post PV since 4 months, in my last BM biopsy it states MF3 for bone fibrosis and the Osteosclerosis is obvious now. My set of questions are: 1- Does Jakafi hinder or slow the Osteosclerosis down? 2- Can this Osteosclerosis retract somehow after the HCT (Transplant
amalekh
in
MPN Voice
6 years ago
Ruxolitinib
Husband has been on Ruxolitinib { Jakavi} 15grms twice a day for the past 15 months. He has never felt better no problems with taking this drug at all and all going well with his bloods etc. He has had knee problems for a long time but has not had knee replacement done as over the past few years
Husband has been on Ruxolitinib { Jakavi} 15grms twice a day for the past 15 months. He has never felt better no problems with taking this drug at all and all going well with his bloods etc. He has had knee problems for a long time but has not had knee replacement done as over the past few years
waddles22
in
MPN Voice
6 years ago
Jakafi
Hi all! I would love your input please with regards to my hematologist is considering change of my meds from Hydrea to Jakafi. This is the first time that it will be used for polycythemia. It has been used in cases of high risk myelofibrosis. This will be in response to the issue of both hands swelling
Hi all! I would love your input please with regards to my hematologist is considering change of my meds from Hydrea to Jakafi. This is the first time that it will be used for polycythemia. It has been used in cases of high risk myelofibrosis. This will be in response to the issue of both hands swelling
Sheryljean
in
MPN Voice
6 years ago
Clinical Trial Ibrutinib Plus Venetoclax Versus Chlorambucil Plus Obinutuzumab Untreated CLL & SLL @EU & UK locations
A Study of the Combination of Ibrutinib Plus Venetoclax Versus Chlorambucil Plus Obinutuzumab for the First-line Treatment of Participants With Chronic Lymphocytic Leukemia (CLL)/Small Lymphocytic Lymphoma (SLL) Phase 3- Radomized Open Label https://clinicaltrials.gov/ct2/show/study/NCT03462719?show_locs
A Study of the Combination of Ibrutinib Plus Venetoclax Versus Chlorambucil Plus Obinutuzumab for the First-line Treatment of Participants With Chronic Lymphocytic Leukemia (CLL)/Small Lymphocytic Lymphoma (SLL) Phase 3- Radomized Open Label https://clinicaltrials.gov/ct2/show/study/NCT03462719?show_locs
lankisterguy
Volunteer
in
CLL Support
6 years ago
Article on ecstasy for leukaemia
Just read a post on msn about giving ecstasy to octopuses ,it says some research says it could help blood cancers , anyone know anything about this ?
Just read a post on msn about giving ecstasy to octopuses ,it says some research says it could help blood cancers , anyone know anything about this ?
therev55
in
CLL Support
6 years ago
Managing Chronic Lymphocytic Leukemia and Its Complications Part I Thursday, November 8, 2018
Dear Friends, CancerCare welcomes you to participate in our upcoming CancerCare Connect® Education Workshop Series, Life with Chronic Lymphocytic Leukemia (CLL), on Thursdays, November 8 and 29. These one-hour telephone and webcast workshops are a cost-free way to learn about cancer-related issues from
Dear Friends, CancerCare welcomes you to participate in our upcoming CancerCare Connect® Education Workshop Series, Life with Chronic Lymphocytic Leukemia (CLL), on Thursdays, November 8 and 29. These one-hour telephone and webcast workshops are a cost-free way to learn about cancer-related issues from
lankisterguy
Volunteer
in
CLL Support
6 years ago
Spleen pain
My spleen grew 4 cm recently and the pain is unbearable! Does anyone else have this issue? I started back in Jakafi and was wondering how long it will take to ease this pain? Thanks in advance. Mary
My spleen grew 4 cm recently and the pain is unbearable! Does anyone else have this issue? I started back in Jakafi and was wondering how long it will take to ease this pain? Thanks in advance. Mary
Murry33
in
MPN Voice
6 years ago
BTK Inhibitor Success Puts Focus on Resistance Mechanisms
Less than 5 years after Bruton tyrosine kinase (BTK) inhibition was introduced in hematologic malignancies, the need for strategies to address primary and secondary mechanisms of resistance has emerged. The robust potency of ibrutinib (Imbruvica), which, in December 2013, became the first BTK inhibitor
Less than 5 years after Bruton tyrosine kinase (BTK) inhibition was introduced in hematologic malignancies, the need for strategies to address primary and secondary mechanisms of resistance has emerged. The robust potency of ibrutinib (Imbruvica), which, in December 2013, became the first BTK inhibitor
Cllcanada
Top Poster CURE Hero
in
CLL Support
6 years ago
How two 1990s discoveries have led to (some) cured cancers, and a Nobel Prize
[i]"This year’s award of the Nobel Prize for Physiology and Medicine to James P. Allison and Tasuku Honjo, for their work in the early 1990s on immune checkpoint proteins CTLA4 and PD1, is a fitting recognition of how their work has led to a seismic shift in the way we treat cancer. In a remarkably
[i]"This year’s award of the Nobel Prize for Physiology and Medicine to James P. Allison and Tasuku Honjo, for their work in the early 1990s on immune checkpoint proteins CTLA4 and PD1, is a fitting recognition of how their work has led to a seismic shift in the way we treat cancer. In a remarkably
AussieNeil
Partner
in
CLL Support
6 years ago
What Lipton green tea bags do you folks recommend? None of the boxes define the EGCG amounts.
Hello this is my first post. I signed up yesterday and have been spending a lot of time reading, so much information. My history starts when I was in the hospital for 10 days due to a bad case of Pneumonia (05/2016). I never had an issue with high blood counts or anything. When I was discharged I
Hello this is my first post. I signed up yesterday and have been spending a lot of time reading, so much information. My history starts when I was in the hospital for 10 days due to a bad case of Pneumonia (05/2016). I never had an issue with high blood counts or anything. When I was discharged I
Riven8
in
CLL Support
6 years ago
Duvelisib has marked response, survival benefit in difficult-to-treat leukemia and lymphoma
"The way we treat patients with CLL is changing rapidly as we move from standard chemotherapy-based approaches to more targeted therapies," said principal investigator Ian W. Flinn, MD, Ph.D., Director of the Lymphoma Research Program at Sarah Cannon Research Institute in Nashville. "Based on these data
"The way we treat patients with CLL is changing rapidly as we move from standard chemotherapy-based approaches to more targeted therapies," said principal investigator Ian W. Flinn, MD, Ph.D., Director of the Lymphoma Research Program at Sarah Cannon Research Institute in Nashville. "Based on these data
Cllcanada
Top Poster CURE Hero
in
CLL Support
6 years ago
FLAIR Trial 2018 update
This trial is comparing ibrutinib alongside rituximab with fludarabine, cyclophosphamide, rituximab and venetoclax for chronic lymphocytic
leukaemia
. This trial is for people who haven’t yet had treatment for their chronic lymphocytic
leukaemia
(CLL). The CLLSA supports this research.
This trial is comparing ibrutinib alongside rituximab with fludarabine, cyclophosphamide, rituximab and venetoclax for chronic lymphocytic
leukaemia
. This trial is for people who haven’t yet had treatment for their chronic lymphocytic
leukaemia
(CLL). The CLLSA supports this research.
Myrddin
in
CLL Support
6 years ago
The CLL Tribune
We just posted the 3rd quarter edition of the CLL Tribune (https://cllsociety.org/quarter-3-2018-volume-4-issue-3/) full of articles on MRD negativity, fatigue, IvGH mutation and much more , including articles written by 5 different. patients and caregivers. The CLL Tribune is the place for patients
We just posted the 3rd quarter edition of the CLL Tribune (https://cllsociety.org/quarter-3-2018-volume-4-issue-3/) full of articles on MRD negativity, fatigue, IvGH mutation and much more , including articles written by 5 different. patients and caregivers. The CLL Tribune is the place for patients
bkoffman
CLL CURE Hero
in
CLL Support
6 years ago
Bone Marrow Transplant telephone conference call TODAY September 19, 2018
September Lunch & Learn With The Link: Blood Cancers and the Role of Bone Marrow Transplantation http://www.lls.org/events/blood-cancers-and-the-role-of-bone-marrow-transplantation?src1=22346&src2= This free telephone support program will focus on the role of transplantation in blood cancers, in
September Lunch & Learn With The Link: Blood Cancers and the Role of Bone Marrow Transplantation http://www.lls.org/events/blood-cancers-and-the-role-of-bone-marrow-transplantation?src1=22346&src2= This free telephone support program will focus on the role of transplantation in blood cancers, in
lankisterguy
Volunteer
in
CLL Support
6 years ago
Is a Lymphnode Biopsy needed to diagnose CLL when WBC and ALC are ok? Is Needle Biopsy good enough? Can it be checked in the blood first?
Hello, I am just curious. When I was first diagnosed the Hematologist ordered a surgeon to cut out Nodes from my Neck to have them biopsied. The surgeon pushed for a node removal instead of a needle biopsy. I did not know at the time but it seems like over kill and they were just trying to bill
Hello, I am just curious. When I was first diagnosed the Hematologist ordered a surgeon to cut out Nodes from my Neck to have them biopsied. The surgeon pushed for a node removal instead of a needle biopsy. I did not know at the time but it seems like over kill and they were just trying to bill
Hoffy
in
CLL Support
6 years ago
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