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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
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
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
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sickle cell news - oct-deec 2018 edition
1.Sickle Cell Trait (SCT): the good, the bad, the deadly 2.SCT not always advantageous or benign 3.SCT: Ugandan SCD activist Ssebandeke Ashiraf has SCT, but it behaves much like SCD 4.SCT: former NFL player James Clarke Ryan nearly nearly knocked out by Sickle Cell Trait, turns activist impatient
1.Sickle Cell Trait (SCT): the good, the bad, the deadly 2.SCT not always advantageous or benign 3.SCT: Ugandan SCD activist Ssebandeke Ashiraf has SCT, but it behaves much like SCD 4.SCT: former NFL player James Clarke Ryan nearly nearly knocked out by Sickle Cell Trait, turns activist impatient
sicklecellnews
in
Sickle Cell Society
6 years ago
I'm new here! This is my Story...
Good evening all, My name is Claire and I am 22 years old. Last week I was diagnosed with Idiopathic Myelofibrosis. I am Jak 2 negative. Ever since I was 16 my platelets were increasing at an alarming rate and just now did my doctor figure out why. I had my first ever bone marrow biopsy done just last
Good evening all, My name is Claire and I am 22 years old. Last week I was diagnosed with Idiopathic Myelofibrosis. I am Jak 2 negative. Ever since I was 16 my platelets were increasing at an alarming rate and just now did my doctor figure out why. I had my first ever bone marrow biopsy done just last
Actuallyclaire
in
MPN Voice
6 years ago
Hip pain
So Ryan has been through the loop.. about every 30 days since August 23rd when we learned of his brain tumor something new has popped up.. the lung tumor that is 4.7cm and now left hip pain to the point where he can’t walk. Where did this come from? Is this a sign the cancer has spread to his bones?
So Ryan has been through the loop.. about every 30 days since August 23rd when we learned of his brain tumor something new has popped up.. the lung tumor that is 4.7cm and now left hip pain to the point where he can’t walk. Where did this come from? Is this a sign the cancer has spread to his bones?
kellyOd
in
Melanoma Caregivers
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
Where to inject
Hi I wanted to ask ? Where on the thigh is the correct position for self injections. Iv watched a lot of videos on YouTube . Some are on the front but I have read here that it is the side . How do you measure , exActly where also do I withdraw the needle to check if I’m in a vein that is a big worry
Hi I wanted to ask ? Where on the thigh is the correct position for self injections. Iv watched a lot of videos on YouTube . Some are on the front but I have read here that it is the side . How do you measure , exActly where also do I withdraw the needle to check if I’m in a vein that is a big worry
Andypandy30
in
Pernicious Anaemia Society
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
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
Flu jab & getting ready for winter
Went to the GP to get my flu jab earlier which I'm hoping will keep me protected over the winter. I've also been put back on doxycycline to give me a base level protection now that the sun is on the wane. Not overly pleased by this as I hate the hot flushes and burning feeling I get when I take the tablets
Went to the GP to get my flu jab earlier which I'm hoping will keep me protected over the winter. I've also been put back on doxycycline to give me a base level protection now that the sun is on the wane. Not overly pleased by this as I hate the hot flushes and burning feeling I get when I take the tablets
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
6 years ago
MF transplant update - discharged from BMT unit and back home
Hi All, delighted to report that I am back home from my local BMT unit and will now be treated as an outpatient. Still along way to go. A bit of background... I was diagnosed with primary myelofibrosis, JAK2 V617F, normal cytogenetics, at age 35. Health declined this year and decided to go for an early
Hi All, delighted to report that I am back home from my local BMT unit and will now be treated as an outpatient. Still along way to go. A bit of background... I was diagnosed with primary myelofibrosis, JAK2 V617F, normal cytogenetics, at age 35. Health declined this year and decided to go for an early
Simon96
in
MPN Voice
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
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
FDA Approves Duvelisib for CLL and Follicular Lymphoma - Sep 24, 2018
FDA Approves Duvelisib for CLL and Follicular Lymphoma Published: Monday, Sep 24, 2018 The FDA has approved duvelisib (Copiktra) for the treatment of patients with relapsed/refractory chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL) or relapsed/refractory follicular lymphoma. - The
FDA Approves Duvelisib for CLL and Follicular Lymphoma Published: Monday, Sep 24, 2018 The FDA has approved duvelisib (Copiktra) for the treatment of patients with relapsed/refractory chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL) or relapsed/refractory follicular lymphoma. - The
lankisterguy
Volunteer
in
CLL Support
6 years ago
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