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Find a Cure for Me - BBC 12 Feb
If you follow CLLSA on Facebook or Twitter or listen to BBC Radio 4 – you may already know that award-winning investigative journalist Simon Cox this week aired a report on his quest for a cure for CLL following his diagnosis at the age of 37. If you missed it, you can catch it on http://www.bbc.co.uk
If you follow CLLSA on Facebook or Twitter or listen to BBC Radio 4 – you may already know that award-winning investigative journalist Simon Cox this week aired a report on his quest for a cure for CLL following his diagnosis at the age of 37. If you missed it, you can catch it on http://www.bbc.co.uk
Myrddin
in
CLL Support
6 years ago
The Cancer Genome Atlas (from NIH) - Great Cancer Resource
There are at least 200 forms of cancer, and many more subtypes. Each of these is caused by errors in DNA that cause cells to grow uncontrolled. Identifying the changes in each cancer’s complete set of DNA – its genome – and understanding how such changes interact to drive the disease will lay the foundation
There are at least 200 forms of cancer, and many more subtypes. Each of these is caused by errors in DNA that cause cells to grow uncontrolled. Identifying the changes in each cancer’s complete set of DNA – its genome – and understanding how such changes interact to drive the disease will lay the foundation
wmay13241
in
CLL Support
6 years ago
What is CRISPR gene editing, and how does it work?
There's been considerable interest in the potential for gene editing for curing diseases such as CLL, so this article by Merlin Crossley, Deputy Vice-Chancellor Academic and Professor of Molecular Biology, UNSW should be of interest: https://theconversation.com/what-is-crispr-gene-editing-and-how-does-it-work
There's been considerable interest in the potential for gene editing for curing diseases such as CLL, so this article by Merlin Crossley, Deputy Vice-Chancellor Academic and Professor of Molecular Biology, UNSW should be of interest: https://theconversation.com/what-is-crispr-gene-editing-and-how-does-it-work
AussieNeil
Partner
in
CLL Support
6 years ago
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Today Leukaemia Care and the challenges of leukaemia patients are revealed under door 19 of the HealthUnlocked advent calander.
[i]"A common misbelief about
leukaemia
is that it only affects children.
Acute
leukaemia
affects around 500 children each year in the UK and around 3 in 4 of these children are diagnosed with ALL – one of the only cancer types to be more prevalent in children than adults.
[i]"A common misbelief about
leukaemia
is that it only affects children.
Acute
leukaemia
affects around 500 children each year in the UK and around 3 in 4 of these children are diagnosed with ALL – one of the only cancer types to be more prevalent in children than adults.
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
6 years ago
Treatment for cll stage 4 with 17p deletion for 63 year old women?
Hello my mother diagnosed with cll stage 4 with 17p deletion in December 2017. She is taking chlorambucil. But in the blood test lymphocytes are increased. Physician said her survival is only 1 year. I'm much worried. She also recommended ibrutinib. But very expensive. Actually I cannot afford. Shall
Hello my mother diagnosed with cll stage 4 with 17p deletion in December 2017. She is taking chlorambucil. But in the blood test lymphocytes are increased. Physician said her survival is only 1 year. I'm much worried. She also recommended ibrutinib. But very expensive. Actually I cannot afford. Shall
Poojaa
in
CLL Support
6 years ago
Cancer-Related Fatigue: Syndrome Not Symptom- by Leukemia & Lymphoma Society
The Leukemia & Lymphoma Society http://www.lls.org/ has published an excellent audio cast on fatigue, that has a different perspective than many of the Patient Power and ONCLive videos on CLL & Fatigue and many suggestions of what we can do to improve our fatigue without pharmaceuticals: (LLS is a USA
The Leukemia & Lymphoma Society http://www.lls.org/ has published an excellent audio cast on fatigue, that has a different perspective than many of the Patient Power and ONCLive videos on CLL & Fatigue and many suggestions of what we can do to improve our fatigue without pharmaceuticals: (LLS is a USA
lankisterguy
Volunteer
in
CLL Support
6 years ago
We need you!
Many of you have completed the Leukaemia Care patient experience survey over the past two years, Analysis of your replies clearly shows that CLL patients are left with little support from healthcare providers during ‘watch and wait’ and you are often not provided with information to help you understand
Many of you have completed the Leukaemia Care patient experience survey over the past two years, Analysis of your replies clearly shows that CLL patients are left with little support from healthcare providers during ‘watch and wait’ and you are often not provided with information to help you understand
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
6 years ago
Update on Lymphoma from the 2017 American Society of Hematology (ASH) Annual Meeting by Stephen M. Ansell, MD, PhD & Laurie H. Sehn, MD, MP
Webinar: Update on Lymphoma from the 2017 American Society of Hematology (ASH) Annual Meeting, which took place on January 23. It is now available on telephone replay 24 hours a day, 7 days a week. Just call 1-800-625-5288 and give the code #1151498 or click here http://click.icptrack.com/icp/relay.php
Webinar: Update on Lymphoma from the 2017 American Society of Hematology (ASH) Annual Meeting, which took place on January 23. It is now available on telephone replay 24 hours a day, 7 days a week. Just call 1-800-625-5288 and give the code #1151498 or click here http://click.icptrack.com/icp/relay.php
lankisterguy
Volunteer
in
CLL Support
6 years ago
Polycythemia enquiry
I am being investigated for Polycycthemia. I'm currently awaiting a nuclear cell mass test but my blood request says ' monitoring on chemotherapy , why is this on the request ? It also says old myeloid ?
I am being investigated for Polycycthemia. I'm currently awaiting a nuclear cell mass test but my blood request says ' monitoring on chemotherapy , why is this on the request ? It also says old myeloid ?
Kwebb
in
MPN Voice
6 years ago
Hyperbaric Oxygen Therapy
I am taking 20 Hyperbaric Treatments in an effort to increase my body's ability to make blood platelets. Hyperbaric increases the number of stem cells in a person's body by 800%. I hope the stem cells can fix my bone marrow so I make more platelets. If this approach to ITP is successful I will let everyone
I am taking 20 Hyperbaric Treatments in an effort to increase my body's ability to make blood platelets. Hyperbaric increases the number of stem cells in a person's body by 800%. I hope the stem cells can fix my bone marrow so I make more platelets. If this approach to ITP is successful I will let everyone
jjjamesholder
in
ITP Support Association
6 years ago
Hypersensitivity Pneumonitis
Hello everyone, I’m a newbie here and looking for any information on the above title. I’ve recently been diagnosed with fibrotic hypersensitivity pneumonitis and am so worried about my condition. Any info on the condition or anyone who also has the condition please feel free to communicate with me.
Hello everyone, I’m a newbie here and looking for any information on the above title. I’ve recently been diagnosed with fibrotic hypersensitivity pneumonitis and am so worried about my condition. Any info on the condition or anyone who also has the condition please feel free to communicate with me.
Hidden
in
Lung Conditions Community Forum
6 years ago
My Spleen is no longer welcome!
Hi guys, I've not been here too much, I have been over on the liver pages. But I thought I would give you an update. So I have been waiting for transplant for 14 with no signs of it happening soon. My spleen is now literally taking over my body! Last scan it was 28cm, I saw one of my Heams last Wednesday
Hi guys, I've not been here too much, I have been over on the liver pages. But I thought I would give you an update. So I have been waiting for transplant for 14 with no signs of it happening soon. My spleen is now literally taking over my body! Last scan it was 28cm, I saw one of my Heams last Wednesday
Chelle_
in
MPN Voice
6 years ago
Myoproliferative Neoplasm Essential Thrombocytosis JAK 2
I am a long term MPN patient, Myoproliferative Neoplasm Essential Thrombocytosis JAK 2 mutation positive. I have taken Hydrea and aspirin for 14 months and have gained about 20 kilos in that short time. Has anyone else experienced this? Is it a side effect of the Hydrea. I take 500mg each day and my
I am a long term MPN patient, Myoproliferative Neoplasm Essential Thrombocytosis JAK 2 mutation positive. I have taken Hydrea and aspirin for 14 months and have gained about 20 kilos in that short time. Has anyone else experienced this? Is it a side effect of the Hydrea. I take 500mg each day and my
Hidden
in
MPN Voice
6 years ago
Newly diagnosed – ET Jak2+ with added drama!
A week later and everything changed again – I was told that the blood oncology team believed I was now at high risk of developing
acute
myeloid
leukaemia
and that I would need a stem cell transplant in the next few months! Obviously this was devastating.
A week later and everything changed again – I was told that the blood oncology team believed I was now at high risk of developing
acute
myeloid
leukaemia
and that I would need a stem cell transplant in the next few months! Obviously this was devastating.
Timjonze
in
MPN Voice
6 years ago
Need bone marrow biopsy
I had some blood work done consistently over 3 months which showed increasing white cell counts and consistent high level Platelets. Hematologist ordered blood smear and jak2 test. Smear results came back as: WBC - Leukocytosis, absolute neutrophilia and monocytosis type. Reactivity Noted PLTs - Thrombocytosis
I had some blood work done consistently over 3 months which showed increasing white cell counts and consistent high level Platelets. Hematologist ordered blood smear and jak2 test. Smear results came back as: WBC - Leukocytosis, absolute neutrophilia and monocytosis type. Reactivity Noted PLTs - Thrombocytosis
Howudoinaz
in
MPN Voice
6 years ago
Waiting on Bone Marrow Biopsy Scared...
So I haven't actually been diagnosed yet, but my Doc suggests polycythemia, Jak 2 was negative by CBC, also EPO was normal, white blood cells normal just my HCT and RBC and Hemoglobin always seem to be high. Doc ordered bone marrow biopsy and now im waiting for the results... The more I read the more
So I haven't actually been diagnosed yet, but my Doc suggests polycythemia, Jak 2 was negative by CBC, also EPO was normal, white blood cells normal just my HCT and RBC and Hemoglobin always seem to be high. Doc ordered bone marrow biopsy and now im waiting for the results... The more I read the more
pgleason210
in
MPN Voice
6 years ago
HI guys its me again
I am looking for people that suffer an MPN from Glasgow central belt Fife and Highlands I am campaigning for every hospital in Scotland which does not have a MPN clinical nurse specialists my argument these nurse specialists are worth their wait in Gold I do not where I would be without her she is at
I am looking for people that suffer an MPN from Glasgow central belt Fife and Highlands I am campaigning for every hospital in Scotland which does not have a MPN clinical nurse specialists my argument these nurse specialists are worth their wait in Gold I do not where I would be without her she is at
Scottishterrier
in
MPN Voice
6 years ago
Leukaemia Care - Patient advocate and GP training lead, Nick York, will be on Sky News from 9.15am
Patient advocate and GP training lead, Nick York, will be on Sky News from 9.15am today talking about why GPs are being urged to do more blood tests - find out more by tuning in. We hope to share his clip later today. At 2.30pm, the APPG on Blood Cancers will be holding a debate in Parliament on blood
Patient advocate and GP training lead, Nick York, will be on Sky News from 9.15am today talking about why GPs are being urged to do more blood tests - find out more by tuning in. We hope to share his clip later today. At 2.30pm, the APPG on Blood Cancers will be holding a debate in Parliament on blood
Myrddin
in
CLL Support
6 years ago
Road to a BMT... oops just got there (Day +50)
Happy New Year - wishing you all a healthy, peaceful and happy 2018 I can’t believe we are already at day 50 in our BMT process - we have been home for 3 weeks now and life is starting to normalize itself, as we all know it is once again a “new normal”. Every relapse, every new treatment results in CLL
Happy New Year - wishing you all a healthy, peaceful and happy 2018 I can’t believe we are already at day 50 in our BMT process - we have been home for 3 weeks now and life is starting to normalize itself, as we all know it is once again a “new normal”. Every relapse, every new treatment results in CLL
NMMP
in
CLL Support
6 years ago
cnsMpn
Anyone that attends a Haematology clinic with an mpn In the Glasgow or central belt or Fife I am trying to get more attending the Clinics I have one and she is brilliant it means the can attend clinics where it saves registrars coming down to do a clinic and helping deal with patients with an mpn that
Anyone that attends a Haematology clinic with an mpn In the Glasgow or central belt or Fife I am trying to get more attending the Clinics I have one and she is brilliant it means the can attend clinics where it saves registrars coming down to do a clinic and helping deal with patients with an mpn that
Scottishterrier
in
MPN Voice
6 years ago
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