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Share Your Thoughts on Clinical Trials- Take Our Survey
Patient Power’s Andrew Schorr will be speaking again before another major audience – this time in Boston on July 21st to heads of research at pharmaceutical companies and government officials. They know clinical trial participation is very low and they want to hear from patients on how they can help
Patient Power’s Andrew Schorr will be speaking again before another major audience – this time in Boston on July 21st to heads of research at pharmaceutical companies and government officials. They know clinical trial participation is very low and they want to hear from patients on how they can help
tclementi
in
CLL Support
8 years ago
Problem
After four months of Chlorambucil th with Allopurinol,my Alc is 6.8,Monocyt 29(1.5-11.5),PLT 117.But my lymph nodes have not decreased in size at all.In Belgrade,the lateste private Ultrasound has discovered many enlarged lymh nodes.In abdomen:in hillus hepatis 42x28mm and three nodes as conglomerat
After four months of Chlorambucil th with Allopurinol,my Alc is 6.8,Monocyt 29(1.5-11.5),PLT 117.But my lymph nodes have not decreased in size at all.In Belgrade,the lateste private Ultrasound has discovered many enlarged lymh nodes.In abdomen:in hillus hepatis 42x28mm and three nodes as conglomerat
Name-1
in
CLL Support
8 years ago
Chronic fatigue syndrome?
Does anyone here suffer from chronic fatigue syndrome? Doctors are telling me it's very possible that's what I have but when I read others stories of having CFS the symptoms don't seem to match up to mine for instance I don't have the flu like symptoms or aching muscles my muscles are very weak but
Does anyone here suffer from chronic fatigue syndrome? Doctors are telling me it's very possible that's what I have but when I read others stories of having CFS the symptoms don't seem to match up to mine for instance I don't have the flu like symptoms or aching muscles my muscles are very weak but
Twinkle333
in
Anxiety Support
8 years ago
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Progress on ACP-196 Trial
Well, went in June for my better half's 3-month checkup. Everthing OK, bloods etc. Results of bone marrow biopsy really good. CLL down to 6% in the bone marrow. This is probably as low as it will go according to our Professor, but he is really pleased with that. All I can say is thank God for Dr
Well, went in June for my better half's 3-month checkup. Everthing OK, bloods etc. Results of bone marrow biopsy really good. CLL down to 6% in the bone marrow. This is probably as low as it will go according to our Professor, but he is really pleased with that. All I can say is thank God for Dr
babswade
in
CLL Support
8 years ago
End of an Era (July 7, 2016)
Hi, Today, in another personal blog post on http://bkoffman.blogspot.com , I share the news of the official end of my allogeneic hematopoietic stem cell transplant story that started 8 years ago and ended with a rejected graft and a quick relapse. I am officially now and probably have been for years
Hi, Today, in another personal blog post on http://bkoffman.blogspot.com , I share the news of the official end of my allogeneic hematopoietic stem cell transplant story that started 8 years ago and ended with a rejected graft and a quick relapse. I am officially now and probably have been for years
bkoffman
CLL CURE Hero
in
CLL Support
8 years ago
Does CLL begin neonatal?
Remember ...it is a long way from mouse to man, but an interesting study...
[i]...[/i] [i]A common feature of B-cell chronic lymphocytic leukemia (CLL) is chromosomal loss of 13q14, containing the miR15a/16-1 locus controlling B-cell proliferation. However, CLL etiology remains unclear. [/i] [
Remember ...it is a long way from mouse to man, but an interesting study...
[i]...[/i] [i]A common feature of B-cell chronic lymphocytic leukemia (CLL) is chromosomal loss of 13q14, containing the miR15a/16-1 locus controlling B-cell proliferation. However, CLL etiology remains unclear. [/i] [
Cllcanada
Top Poster CURE Hero
in
CLL Support
8 years ago
Hi there, I'd like to introduce myself
I am Ezabella, from Australia, a new member to the community of CLL, I was recently diagnosed with CLL went through hard emotional time, I'd like to share knowledge, exchange information with other members of the CLL Association, for mutual support. Thank you, Ezabelle
I am Ezabella, from Australia, a new member to the community of CLL, I was recently diagnosed with CLL went through hard emotional time, I'd like to share knowledge, exchange information with other members of the CLL Association, for mutual support. Thank you, Ezabelle
ezabella
in
CLL Support
8 years ago
Swollen feet
Went to doc tonight just to pick up prescription the place was totally empty receptionist said it had been quite all day so I said is there still a doc here she said yes and I see him straight away bit worried as feet swelled over last 2 days he did advise me that this could be dangerous as it sometimes
Went to doc tonight just to pick up prescription the place was totally empty receptionist said it had been quite all day so I said is there still a doc here she said yes and I see him straight away bit worried as feet swelled over last 2 days he did advise me that this could be dangerous as it sometimes
Jeanjt
in
Lung Conditions Community Forum
8 years ago
IGVH-mutation status may be more easily measured via a chromatin profile
The late Prof Terry Hamblin discovered that CLL IGVH mutation status clearly identified probable time to treatment, with patients IGVH mutated typically having a much longer time to treatment if they needed treatment at all. Furthermore, unlike other prognostic markers, the IGVH mutation prognostic
The late Prof Terry Hamblin discovered that CLL IGVH mutation status clearly identified probable time to treatment, with patients IGVH mutated typically having a much longer time to treatment if they needed treatment at all. Furthermore, unlike other prognostic markers, the IGVH mutation prognostic
AussieNeil
Partner
in
CLL Support
8 years ago
del17p CLL? Overall Survival and Progression-Free Survival Are Improved With Ibrutinib
[i]Ibrutinib treatment for chronic lymphocytic leukemia with the deletion of chromosome 17p (del17p CLL) increases the percentage of patients alive at 30 months over other therapies for del17p CLL, study findings presented at the European Hematology Association 21st Congress have shown:[/i] http://www.oncologynurseadvisor.com
[i]Ibrutinib treatment for chronic lymphocytic leukemia with the deletion of chromosome 17p (del17p CLL) increases the percentage of patients alive at 30 months over other therapies for del17p CLL, study findings presented at the European Hematology Association 21st Congress have shown:[/i] http://www.oncologynurseadvisor.com
AussieNeil
Partner
in
CLL Support
8 years ago
Open communication is best when sharing news of your cancer with your teenage or young adult children
[i]'Every year around 21,000 teenagers and young adults in Australia are told their parent has cancer. The need to care for their parents often disrupts these young people’s efforts for increased social, emotional and financial independence. Young people typically rise to the challenge, wanting to be
[i]'Every year around 21,000 teenagers and young adults in Australia are told their parent has cancer. The need to care for their parents often disrupts these young people’s efforts for increased social, emotional and financial independence. Young people typically rise to the challenge, wanting to be
AussieNeil
Partner
in
CLL Support
8 years ago
Is this still IBS?
Have suffered for over 30 years on and off with varying symptoms of IBS but the last couple of weeks have got really bad and just wondering if this is really IBS and what to do about it. My stools have been really soft for months now and go once or twice a day, mainly first thing in the morning. Then
Have suffered for over 30 years on and off with varying symptoms of IBS but the last couple of weeks have got really bad and just wondering if this is really IBS and what to do about it. My stools have been really soft for months now and go once or twice a day, mainly first thing in the morning. Then
ploppy57
in
IBS Network
8 years ago
Dr. Wierda on the Importance of Clinical Trials
I’m home from the European Hematology Association Congress in Copenhagen. I received very positive feedback on my lecture and the preliminary data from our Reader Poll with many requests for more information. We plan to follow up with another survey, Seems the 1000 plus hematologists to whom I presented
I’m home from the European Hematology Association Congress in Copenhagen. I received very positive feedback on my lecture and the preliminary data from our Reader Poll with many requests for more information. We plan to follow up with another survey, Seems the 1000 plus hematologists to whom I presented
bkoffman
CLL CURE Hero
in
CLL Support
8 years ago
Keeping track of what I eat can you help
I've been following the advice of my specialist you know list of eats and dont eats but as my gfr dived nearly 3% to 39.47 I think I need to go further into my diet tracking nutrients etc you know protien carbs etc can you help with recipies and apps that can help me keep track?
I've been following the advice of my specialist you know list of eats and dont eats but as my gfr dived nearly 3% to 39.47 I think I need to go further into my diet tracking nutrients etc you know protien carbs etc can you help with recipies and apps that can help me keep track?
joke
in
Early CKD Support
8 years ago
Anyone had a 2nd transplant?
Hi all, My wife is just about to be listed for her second liver transplant. She's had many treatments to reverse the rejection but none seem to have worked - in addition she's had multiple CMV infections, sepsis (not helped by being very immunosupressed....), and acute kidney injury. She is about 18
Hi all, My wife is just about to be listed for her second liver transplant. She's had many treatments to reverse the rejection but none seem to have worked - in addition she's had multiple CMV infections, sepsis (not helped by being very immunosupressed....), and acute kidney injury. She is about 18
strangecarr
in
British Liver Trust
8 years ago
CLL & Essential Thrombocytosis
17 yrs w&w,now treating ET with Hydra (Hydroxyurea).Platelets had gone up to 1000 (400 is considered pretty high) One interesting goody that I have had happen twice now(once before treatment and once last sat.) is focal seizure. They only lasted a minute but I've read are precursors to something bigger
17 yrs w&w,now treating ET with Hydra (Hydroxyurea).Platelets had gone up to 1000 (400 is considered pretty high) One interesting goody that I have had happen twice now(once before treatment and once last sat.) is focal seizure. They only lasted a minute but I've read are precursors to something bigger
kitcat49
in
CLL Support
8 years ago
Allogeneic Transplantation for Chronic Lymphocytic Leukemia in the Age of Novel Treatment Strategies
Given we currently have a few members going through bone marrow transplants, this review article in CancerNetwork by Mark-Alexander Schwarzbich, MD, Fabienne McClanahan, MD, PhD, and John Gribben, MD, DSc should be of interest: http://www.cancernetwork.com/oncology-journal/allogeneic-transplantation-chronic-lymphocytic-leukemia-age-novel-treatment-strategies
Given we currently have a few members going through bone marrow transplants, this review article in CancerNetwork by Mark-Alexander Schwarzbich, MD, Fabienne McClanahan, MD, PhD, and John Gribben, MD, DSc should be of interest: http://www.cancernetwork.com/oncology-journal/allogeneic-transplantation-chronic-lymphocytic-leukemia-age-novel-treatment-strategies
AussieNeil
Partner
in
CLL Support
8 years ago
What to do?
Hi all, I have a decision to make and would like your feedback. I read the posts regularly but don't post much. So, I was diagnosed with CLL last year 6/15 at age 65 (though I suspect it really started around 2009 when I had a slightly elevated absolute lymphocyte count and a swollen lymph node in
Hi all, I have a decision to make and would like your feedback. I read the posts regularly but don't post much. So, I was diagnosed with CLL last year 6/15 at age 65 (though I suspect it really started around 2009 when I had a slightly elevated absolute lymphocyte count and a swollen lymph node in
SandiC
in
CLL Support
8 years ago
Copd treatment
Hello. I'm 57 smoked for years have quit and now I have copd. I believe 1st stage. Looking for homeopathic methods to treat. Don't really want to use an inhaler. If anybody has any other treatment advice please let me know thanks.
Hello. I'm 57 smoked for years have quit and now I have copd. I believe 1st stage. Looking for homeopathic methods to treat. Don't really want to use an inhaler. If anybody has any other treatment advice please let me know thanks.
Mspatriot57
in
COPD Friends
8 years ago
Cancer Lottery - campaign asking for fair consideration of new drugs required to treat rarer cancer patients in the UK
Many will have been following the unsatisfactory way in which new drugs for CLL are being assessed and Ibrutinib not gaining a favourable preliminary recommendation at this stage of the assessment process by NICE is of real concern. Recent de-listings of CLL drugs from the Cancer Drugs Fund are adding
Many will have been following the unsatisfactory way in which new drugs for CLL are being assessed and Ibrutinib not gaining a favourable preliminary recommendation at this stage of the assessment process by NICE is of real concern. Recent de-listings of CLL drugs from the Cancer Drugs Fund are adding
HAIRBEAR_UK
Administrator
in
CLL Support
8 years ago
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