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CLLSA/Leukaemia Care UK buddy scheme now live - Do you want to connect with someone who has experience living with CLL?
The 12 month pilot scheme launched by CLLSA and
Leukaemia
Care is now live.. A buddy is someone with the same diagnosis who has experience and understanding of living with Chronic Lymphocytic
Leukaemia
. Buddies are trained to support you emotionally and are CLL patients themselves.
The 12 month pilot scheme launched by CLLSA and
Leukaemia
Care is now live.. A buddy is someone with the same diagnosis who has experience and understanding of living with Chronic Lymphocytic
Leukaemia
. Buddies are trained to support you emotionally and are CLL patients themselves.
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
6 years ago
Another dry tap
In my case, I suspect the main things they were looking for were signs of
leukaemia
, which was not mentioned so happy with that. Asked about high risk mutations such as ASXL1 and TET2. They have not been tested for. Haemoglobin level was steady. Dropping the daily 1gm of HU.
In my case, I suspect the main things they were looking for were signs of
leukaemia
, which was not mentioned so happy with that. Asked about high risk mutations such as ASXL1 and TET2. They have not been tested for. Haemoglobin level was steady. Dropping the daily 1gm of HU.
Simon96
in
MPN Voice
6 years ago
CLLSA Response to NHS England Failing to Fund Ibrutinib in line with NICE Guidance
CLL is an incurable blood cancer and the most common form of
in adults in the UK. CLL is not treatable using surgery or radiotherapy, so access to effective and well-tolerated drug treatments is essential.
CLL is an incurable blood cancer and the most common form of
in adults in the UK. CLL is not treatable using surgery or radiotherapy, so access to effective and well-tolerated drug treatments is essential.
Jm954
Administrator
in
CLL Support
6 years ago
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Lets get our message out there UK CLL'ers
I feel like we are the cinderella of the
leukaemia
world so please join me and take action. Shocking statistics
I feel like we are the cinderella of the
leukaemia
world so please join me and take action. Shocking statistics
TAS50
in
CLL Support
6 years ago
Managing the Complications of Chronic Lymphocytic Leukemia (CLL) Online Program by The CancerCare Education Department (USA)
We appreciate your participation in Managing the Complications of Chronic Lymphocytic Leukemia (CLL), which took place on May 17. We hope you found this workshop informative and look forward to your feedback. If you were not able to attend this workshop, it is available on telephone replay 24 hours a
We appreciate your participation in Managing the Complications of Chronic Lymphocytic Leukemia (CLL), which took place on May 17. We hope you found this workshop informative and look forward to your feedback. If you were not able to attend this workshop, it is available on telephone replay 24 hours a
lankisterguy
Volunteer
in
CLL Support
6 years ago
Getting better
I have been too slow in sharing good news. Last week I learned that my bone marrow biopsy done 28 days after getting my CAR-T cells showed no copies of the DNA signature of my CLL- this is at least one log lower than the usual MRD testing by flow cytometry finding one cell in 100,000. More details on
I have been too slow in sharing good news. Last week I learned that my bone marrow biopsy done 28 days after getting my CAR-T cells showed no copies of the DNA signature of my CLL- this is at least one log lower than the usual MRD testing by flow cytometry finding one cell in 100,000. More details on
bkoffman
CLL CURE Hero
in
CLL Support
6 years ago
My cancer is in remission – what does this mean?
[i]"In the 1970s, only one cancer patient in three made it through the first five years after diagnosis. Today, this figure is around 70%, and exceeds 85% for some cancers that were previously fatal. So, remission might mean cure but we only know that over time." [/i] So concludes Ian Olver, Director
[i]"In the 1970s, only one cancer patient in three made it through the first five years after diagnosis. Today, this figure is around 70%, and exceeds 85% for some cancers that were previously fatal. So, remission might mean cure but we only know that over time." [/i] So concludes Ian Olver, Director
AussieNeil
Administrator
in
CLL Support
6 years ago
Stem cell transplant outcomes
Hi Y'All, I have post-PV Myelofibrosis and am getting to the stage where I can see transfusions looming and therefore my best chance for stem cell transplant (SCT) will soon be gone. I have so far resisted SCT because the outcomes are so unpredictable (especially if u don't have a related donor, which
Hi Y'All, I have post-PV Myelofibrosis and am getting to the stage where I can see transfusions looming and therefore my best chance for stem cell transplant (SCT) will soon be gone. I have so far resisted SCT because the outcomes are so unpredictable (especially if u don't have a related donor, which
jane13
in
MPN Voice
6 years ago
High GGT post treatment for Acute Myeloid Leukaemia
Hi I have a GGT reading of 900. It has been rising steadily since a successful stem cell transplant in August. I drink very little and am only a bit overweight. My disease is in remission but am still not feeling well. Many of my symptoms - nausea, fatigue and loss of appetite could be caused by liver
Hi I have a GGT reading of 900. It has been rising steadily since a successful stem cell transplant in August. I drink very little and am only a bit overweight. My disease is in remission but am still not feeling well. Many of my symptoms - nausea, fatigue and loss of appetite could be caused by liver
Hidden
in
British Liver Trust
6 years ago
Efficient control of leukaemia with treatment by dual immune-checkpoint blockade - Luxembourg Institute of Health - 18.04.2018
https://m.medicalxpress.com/news/2018-04-efficient-
leukaemia
-treatment-dual-immune-checkpoint.html
https://m.medicalxpress.com/news/2018-04-efficient-
leukaemia
-treatment-dual-immune-checkpoint.html
Juliette02
in
CLL Support
6 years ago
Hydroxycarbamide (esp 70+, diabetics)
Hello Just looking for some feedback. My mum is 70, a type 2 diabetic and of Indian heritage. We are UK based. She has just been diagnosed with having Essential Thrombocythaemia. As a result she will have to start (or will have started depending on when you read this) taking hydroxycarbamide tablets
Hello Just looking for some feedback. My mum is 70, a type 2 diabetic and of Indian heritage. We are UK based. She has just been diagnosed with having Essential Thrombocythaemia. As a result she will have to start (or will have started depending on when you read this) taking hydroxycarbamide tablets
DS5AS
in
MPN Voice
6 years ago
Efficient control of leukaemia with treatment by dual immune-checkpoint blockade
https://www.lih.lu/blog/our-news-1/post/efficient-control-of-
leukaemia
-with-treatment-by-dual-immune-checkpoint-blockade-190
https://www.lih.lu/blog/our-news-1/post/efficient-control-of-
leukaemia
-with-treatment-by-dual-immune-checkpoint-blockade-190
Medabouhedi
in
CLL Support
6 years ago
Thoughts on CLL treatment and watch and wait
I’d be really interested in other people’s thought processes about this. I’m not a haematologist, and this is all in the realm of theory and so may not stand up to clinical trials or the real world. I guess in a way I’m trying to synthesize a philosophy of treatment. 1. Why do we watch and wait? As
I’d be really interested in other people’s thought processes about this. I’m not a haematologist, and this is all in the realm of theory and so may not stand up to clinical trials or the real world. I guess in a way I’m trying to synthesize a philosophy of treatment. 1. Why do we watch and wait? As
AdrianUK
in
CLL Support
6 years ago
An exercise pill would be prescribed to every cancer patient worldwide and viewed as a major breakthrough in cancer treatment
Today, Australia’s peak body representing health professionals who treat people with cancer, has joined 25 other cancer organisations [u]to call for exercise to be prescribed to all cancer patients as part of routine cancer care[/u]. [i]"Published today in the Medical Journal of Australia, our plan is
Today, Australia’s peak body representing health professionals who treat people with cancer, has joined 25 other cancer organisations [u]to call for exercise to be prescribed to all cancer patients as part of routine cancer care[/u]. [i]"Published today in the Medical Journal of Australia, our plan is
AussieNeil
Administrator
in
CLL Support
6 years ago
CALR Type 1 & 2 Have Contrasting OS Outcomes
Hey everyone, As an update, since my last post (ASXL1 Mutation Detected), I recently came across some very useful articles concerning the CALR mutations & ASXL1 and their ability to be included as Prognostically significant, and naturally wanted to share those findings hopefully to the benefit of others
Hey everyone, As an update, since my last post (ASXL1 Mutation Detected), I recently came across some very useful articles concerning the CALR mutations & ASXL1 and their ability to be included as Prognostically significant, and naturally wanted to share those findings hopefully to the benefit of others
socrates_8
in
MPN Voice
6 years ago
Concerning blood results
Hi was wanting some support and advice from everyone on here. My blood platelets are elevated, my mean cell volume is down. After looking at blood under the microscope it’s been said that I have lymphocytosis with occasional abnormal lymphocytes and hypochromic microcytosis. These levels have been slowly
Hi was wanting some support and advice from everyone on here. My blood platelets are elevated, my mean cell volume is down. After looking at blood under the microscope it’s been said that I have lymphocytosis with occasional abnormal lymphocytes and hypochromic microcytosis. These levels have been slowly
Hanneesweedie
in
CLL Support
6 years ago
CLL: FLAIR Trial site list and update to design
More information on the FLAIR trial as it is currently set up can be found here: http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-ibrutinib-rituximab-chronic-lymphocytic-
leukaemia
-flair ---------------------------------------------- Email received this morning from organisers
More information on the FLAIR trial as it is currently set up can be found here: http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-ibrutinib-rituximab-chronic-lymphocytic-
leukaemia
-flair ---------------------------------------------- Email received this morning from organisers
AdrianUK
in
Leukaemia CARE
6 years ago
The History of BMT
BMTInfonet’s video on the history of bone marrow and stem cell transplant. I have always been aware of the Anthony Nolan registry but never knew just what a profound impact it had worldwide. https://www.bmtinfonet.org/transplant-article/what-blood-stem-cell-transplant
BMTInfonet’s video on the history of bone marrow and stem cell transplant. I have always been aware of the Anthony Nolan registry but never knew just what a profound impact it had worldwide. https://www.bmtinfonet.org/transplant-article/what-blood-stem-cell-transplant
MFBMT2011
in
MPN Voice
6 years ago
Myelofibrosis & Yransplant Symposium
Currently in Denver where Lesley, my better half, and I attended a two day Bone Marrow Transplant Symposium and met fellow survivors. Have pasted my MPNForum Facebook post here to share. Day one at the BMTinfonet symposium in Denver. A couple of hundred present but the Myelofibrosis break out group
Currently in Denver where Lesley, my better half, and I attended a two day Bone Marrow Transplant Symposium and met fellow survivors. Have pasted my MPNForum Facebook post here to share. Day one at the BMTinfonet symposium in Denver. A couple of hundred present but the Myelofibrosis break out group
MFBMT2011
in
MPN Voice
6 years ago
It's Official! Curing Patients Is Bad for Business! Milton Packer describes the end result of profit-dominated drug development
and-it-keeps-getting-pricier/2016/03/09/4fff8102-c571-11e5-a4aa-f25866ba0dc6_story.html The history of Gleevec is particularly relevant to us, as this was the first instance of a custom developed monoclonal antibody (like Rituxan) achieving success in changing the life expectancy of patients with Chronic Myelogenous
Leukaemia
and-it-keeps-getting-pricier/2016/03/09/4fff8102-c571-11e5-a4aa-f25866ba0dc6_story.html The history of Gleevec is particularly relevant to us, as this was the first instance of a custom developed monoclonal antibody (like Rituxan) achieving success in changing the life expectancy of patients with Chronic Myelogenous
Leukaemia
AussieNeil
Administrator
in
CLL Support
6 years ago
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