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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
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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
Vaccine Recommendations for CLL Patient Power Video- August 16, 2018
Should chronic
lymphocytic
leukemia
(CLL) patients get preventative vaccinations? A panel of experts including Dr. Michael Keating, from The University of Texas MD Anderson Cancer Center, and Dr.
Should chronic
lymphocytic
leukemia
(CLL) patients get preventative vaccinations? A panel of experts including Dr. Michael Keating, from The University of Texas MD Anderson Cancer Center, and Dr.
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
Ibrutinib linked to invasive fungal infections
- Although ibrutinib, an inhibitor of Bruton’s tyrosine kinase, is generally considered to be less immunosuppressive than other therapies, it was associated with five cases of Pneumocystis jirovecii pneumonia in patients with chronic
lymphocytic
leukemia
(CLL) treated with ibrutinib monotherapy in
- Although ibrutinib, an inhibitor of Bruton’s tyrosine kinase, is generally considered to be less immunosuppressive than other therapies, it was associated with five cases of Pneumocystis jirovecii pneumonia in patients with chronic
lymphocytic
leukemia
(CLL) treated with ibrutinib monotherapy in
lankisterguy
Volunteer
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
Dr. Wierda on the paradigm shift in CLL.
https://www.targetedonc.com/case-based-peer-perspectives/chronic-
lymphocytic
-
leukemia
/wierda-igvh-cll/shifting-the-treatment-paradigm-of-cll
https://www.targetedonc.com/case-based-peer-perspectives/chronic-
lymphocytic
-
leukemia
/wierda-igvh-cll/shifting-the-treatment-paradigm-of-cll
baq724
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
ONC Live Videos of CLL Expert Doctors on current topics
O’Brien, MD, discusses the unmet needs in the treatment and management of patients with chronic
lymphocytic
leukemia
.
O’Brien, MD, discusses the unmet needs in the treatment and management of patients with chronic
lymphocytic
leukemia
.
lankisterguy
Volunteer
in
CLL Support
6 years ago
Hydroxycarbamide or not!
Hello, I am new to Health Unlocked. I was diagnosed with Essential Thrombocythemia in June 5 days before having a Breast Lumpectomy. I have been prescribed Letrozole hormone therapy for 5 years for this and on reading side effects from Hydroxycarbamide AND Letrozole I am very undecided whether to continue
Hello, I am new to Health Unlocked. I was diagnosed with Essential Thrombocythemia in June 5 days before having a Breast Lumpectomy. I have been prescribed Letrozole hormone therapy for 5 years for this and on reading side effects from Hydroxycarbamide AND Letrozole I am very undecided whether to continue
azaelea
in
MPN Voice
6 years ago
Platelets & me
Hi guys, I am somewhat new here and wanted to introduce myself. My name's Luke and ITP is a fairly new thing for me. I might have suffered from mild ITP early on in my life but it only started to be problematic after I've undergone treatment in 2013 (4 years of remission so far, so I am definitely hopeful
Hi guys, I am somewhat new here and wanted to introduce myself. My name's Luke and ITP is a fairly new thing for me. I might have suffered from mild ITP early on in my life but it only started to be problematic after I've undergone treatment in 2013 (4 years of remission so far, so I am definitely hopeful
conquerator2
in
ITP Support Association
6 years ago
polycythemia what foods or supplements should we Avoid ?
polycythemia Vera , b12 ,folate , vit c , soya products
polycythemia Vera , b12 ,folate , vit c , soya products
nightssky
in
MPN Voice
6 years ago
Bruising and itching
I'm concerned because I have Chronic
Lymphocytic
Leukemia
. It's not painful (except for the itching) and I didn't hit my side to cause any bruising.
I'm concerned because I have Chronic
Lymphocytic
Leukemia
. It's not painful (except for the itching) and I didn't hit my side to cause any bruising.
RegYJohn74
in
CLL Support
6 years ago
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