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Long term
Does anyone take Rayos for their maintenance of PRM? Also any thoughts on eating an anti- inflammatory diet. Trying to wade through all the info that I have found and come up with an eating plan that helps me to stay as pain free as possible. So far I've noticed that sugar and gluten are big triggers
Does anyone take Rayos for their maintenance of PRM? Also any thoughts on eating an anti- inflammatory diet. Trying to wade through all the info that I have found and come up with an eating plan that helps me to stay as pain free as possible. So far I've noticed that sugar and gluten are big triggers
PMRnewbie
in
PMRGCAuk
9 years ago
Official diagnosis
I posted the other day that it was suspected that I have CLL/SLL. Today I saw my oncologist and he confirmed that diagnosis. I am on watch and wait. He did tell me that I don't have any markers that would suggest my CLL will be aggressive but I also don't have the markers that would suggest I may
I posted the other day that it was suspected that I have CLL/SLL. Today I saw my oncologist and he confirmed that diagnosis. I am on watch and wait. He did tell me that I don't have any markers that would suggest my CLL will be aggressive but I also don't have the markers that would suggest I may
KellyM
in
CLL Support
9 years ago
Raised WBC count
Hi everyone, I think I mentioned that I had my blood tests done a couple of weeks ago to see how things are progressing. I am lucky that I feel fine (other than tired and lethargic) and have no other physical symptoms at the moment. My lymphocyte count is slowly increasing - 7.8 last January, 8.9 in
Hi everyone, I think I mentioned that I had my blood tests done a couple of weeks ago to see how things are progressing. I am lucky that I feel fine (other than tired and lethargic) and have no other physical symptoms at the moment. My lymphocyte count is slowly increasing - 7.8 last January, 8.9 in
Firefly14
in
CLL Support
9 years ago
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Possible CLL/SLL
Hi everyone! I'm a healthy 38 year old Mom to a three year old and I've been told I could possibly have CLL/SLL. I had a fine needle aspiration a few weeks ago and had to have an open biopsy on an enlarged lymph node just yesterday. I am so scared! My doctor says I'm really young to be diagnosed with
Hi everyone! I'm a healthy 38 year old Mom to a three year old and I've been told I could possibly have CLL/SLL. I had a fine needle aspiration a few weeks ago and had to have an open biopsy on an enlarged lymph node just yesterday. I am so scared! My doctor says I'm really young to be diagnosed with
KellyM
in
CLL Support
9 years ago
Oil of Oregano
Hi everyone: I often hear oil of Oregano can help with many ailments. Has anyone had any experience with it for the treatment of CLL? I'm not one to off half cocked trying anything and everything looking for the miracle cure. I realize we have an incurable disease but wonder if there aren't things
Hi everyone: I often hear oil of Oregano can help with many ailments. Has anyone had any experience with it for the treatment of CLL? I'm not one to off half cocked trying anything and everything looking for the miracle cure. I realize we have an incurable disease but wonder if there aren't things
RK66
in
CLL Support
9 years ago
Hemoglobin iron count.
Hi For the past 3 years I have been seeing a blood specialist every 3 months, back in 2012 my iron and hemoglobin was that low I had a blood transfusion, ever since my hemoglobin count is up and down like a yo yo, I'm on iron and vitamin c tablets, 1 per day, they are at a loss to what's causing this
Hi For the past 3 years I have been seeing a blood specialist every 3 months, back in 2012 my iron and hemoglobin was that low I had a blood transfusion, ever since my hemoglobin count is up and down like a yo yo, I'm on iron and vitamin c tablets, 1 per day, they are at a loss to what's causing this
1968
in
Lung Conditions Community Forum
9 years ago
Renal parenchyma disease
My fiance has MPO vasculitis. He recently had a kidney biopsy and was diagnosed as having Moderate Echogenic Left Renal Parenchyma. Does anyone know what that is? Is a kidney transplant an option?
My fiance has MPO vasculitis. He recently had a kidney biopsy and was diagnosed as having Moderate Echogenic Left Renal Parenchyma. Does anyone know what that is? Is a kidney transplant an option?
Christina1960
in
Vasculitis UK
9 years ago
Live News Coverage from ASH
As you know, I am a newsman at heart - a journalist since 1967 as a student. Since 1984 I have devoted myself to bringing news to patients with serious illnesses and it has become clear patients want news that can improve their care faster and hear it, if possible, directly from world experts - unfiltered
As you know, I am a newsman at heart - a journalist since 1967 as a student. Since 1984 I have devoted myself to bringing news to patients with serious illnesses and it has become clear patients want news that can improve their care faster and hear it, if possible, directly from world experts - unfiltered
andrewschorr
in
CLL Support
9 years ago
The search continues for additional targets in CLL - an introduction to Axl receptor tyrosine kinase and its inhibitor TP-0903
[i]"Despite enormous advances in therapies for chronic lymphocytic leukemia (CLL) that target the B-cell receptor (BCR) signaling pathway, there is still room for improvement, according to investigators at the Mayo Clinic. Bruton’s tyrosine kinase (BTK) and phosphoinositide-3 kinase delta (PI3Kδ) inhibitors
[i]"Despite enormous advances in therapies for chronic lymphocytic leukemia (CLL) that target the B-cell receptor (BCR) signaling pathway, there is still room for improvement, according to investigators at the Mayo Clinic. Bruton’s tyrosine kinase (BTK) and phosphoinositide-3 kinase delta (PI3Kδ) inhibitors
AussieNeil
Partner
in
CLL Support
9 years ago
Venetoclax (ABT-199) response rate on del 17p CLL patients (ASH 2015)
[i]"Patients with CLL harboring 17p deletion [del(17p)] are considered to have very poor prognosis. Venetoclax is an orally bioavailable, selective BCL-2 inhibitor that induces apoptosis in CLL cells independent of p53. A phase 1 study of Venetoclax showed high response rates in patients with relapsed
[i]"Patients with CLL harboring 17p deletion [del(17p)] are considered to have very poor prognosis. Venetoclax is an orally bioavailable, selective BCL-2 inhibitor that induces apoptosis in CLL cells independent of p53. A phase 1 study of Venetoclax showed high response rates in patients with relapsed
AussieNeil
Partner
in
CLL Support
9 years ago
flow cytometry
In May 2015 I had this result: - Immunophenotypic evidence of persistent chronic lymphocytic leukemia / small lymphocytic lymphoma (CLL/SLL, ~49.7% of total), CD38(-) and ZAP-70(-). See comment. Last week I had this result: Immunophenotypic findings consistent with CD38-/ZAP70- Chronic Lymphocytic Leukemia
In May 2015 I had this result: - Immunophenotypic evidence of persistent chronic lymphocytic leukemia / small lymphocytic lymphoma (CLL/SLL, ~49.7% of total), CD38(-) and ZAP-70(-). See comment. Last week I had this result: Immunophenotypic findings consistent with CD38-/ZAP70- Chronic Lymphocytic Leukemia
bonbeat
in
CLL Support
9 years ago
Chairman's letter to members - The outcome and next steps - CLLSA Campaign on delisting of CLL drugs from the Cancer Drugs Fund
Thank you to all our members who supported the CLLSA Campaign to appeal against the delisting of Ibrutinib and Bendamustine for the treatment of relapsed/refractory CLL from the Cancer Drugs Fund. We have had a great response from you and more than 150 members wrote to their MP, and several also visited
Thank you to all our members who supported the CLLSA Campaign to appeal against the delisting of Ibrutinib and Bendamustine for the treatment of relapsed/refractory CLL from the Cancer Drugs Fund. We have had a great response from you and more than 150 members wrote to their MP, and several also visited
HAIRBEAR_UK
Administrator
in
CLL Support
9 years ago
Dr. Castro on High Risk CLL and Richter's Transformation
Friends, Today on the http://cllsociety.org, we share Dr. Januario Castro's lecture from the Patient Empowerment and Education Meeting held at UCSD in April 2015 about using targeted therapies to treat high-risk CLL, specifically Richter's transformation, plus a description of a new clinical trial that
Friends, Today on the http://cllsociety.org, we share Dr. Januario Castro's lecture from the Patient Empowerment and Education Meeting held at UCSD in April 2015 about using targeted therapies to treat high-risk CLL, specifically Richter's transformation, plus a description of a new clinical trial that
bkoffman
CLL CURE Hero
in
CLL Support
9 years ago
How Personalised Medicine is used to target variations unique to each cancer tumour
[i]"Cancer is fundamentally a disease of altered genomics – genetic material making up the structure of cells. Because these alterations are different in each person, every tumour is programmed differently with genes made up of varying sequences of DNA. This is why not everyone will respond the same
[i]"Cancer is fundamentally a disease of altered genomics – genetic material making up the structure of cells. Because these alterations are different in each person, every tumour is programmed differently with genes made up of varying sequences of DNA. This is why not everyone will respond the same
AussieNeil
Partner
in
CLL Support
9 years ago
Newly diagnosed and very confused!
Hi, I went to the doctors about a small lump in my upper abdomen and constant IBS type symptoms. I was given an ultrasound and blood tests. 2 weeks later i get the results and he tells me there is no solid mass so nothing to worry about. But my blood reveals I am borderline to having an underactive Thyroid
Hi, I went to the doctors about a small lump in my upper abdomen and constant IBS type symptoms. I was given an ultrasound and blood tests. 2 weeks later i get the results and he tells me there is no solid mass so nothing to worry about. But my blood reveals I am borderline to having an underactive Thyroid
Diyena
in
Thyroid UK
9 years ago
Dec 12 at City of Hope: Patient Educational Forum and Launch of an Ongoing CLL Society Support Group Meeting in LA and a lot more
Some have asked for a link to the brochure for the City of Hope, LLS and CLL Society meeting that we are all sponsoring just after I and Drs. Siddiqi and Rosen return from the major CLL news and research meeting of the year, namely ASH 2015. We will be armed with not just the latest news on CLL, but
Some have asked for a link to the brochure for the City of Hope, LLS and CLL Society meeting that we are all sponsoring just after I and Drs. Siddiqi and Rosen return from the major CLL news and research meeting of the year, namely ASH 2015. We will be armed with not just the latest news on CLL, but
bkoffman
CLL CURE Hero
in
CLL Support
9 years ago
Chronic fatigue and medication
Hi everyone, I visited my GP yesterday after being gripped by fatigue and joint pain for many months. He has diagnosed chronic fatigue syndrome (ME) and prescribed Fluoxetine (Prozac) 20mg every morning. He explained that can act as a mild stimulant and is very successful in treating CFS. Although I
Hi everyone, I visited my GP yesterday after being gripped by fatigue and joint pain for many months. He has diagnosed chronic fatigue syndrome (ME) and prescribed Fluoxetine (Prozac) 20mg every morning. He explained that can act as a mild stimulant and is very successful in treating CFS. Although I
Shiloh119
in
PBC Foundation
9 years ago
HBA1C always around 9
Hi, I am a diabetic type 1 diagnosed in 2002 and since then on Huminsulin 30/70(Morning 38 units and night 40 units) and oral drugs Gluconorm G1 (Daily Twice); 1 mutivitamin tab every night( A to Z vit). In a week, I wake up with Low Sugars almost every alternate day, but still my HBA1C is always around
Hi, I am a diabetic type 1 diagnosed in 2002 and since then on Huminsulin 30/70(Morning 38 units and night 40 units) and oral drugs Gluconorm G1 (Daily Twice); 1 mutivitamin tab every night( A to Z vit). In a week, I wake up with Low Sugars almost every alternate day, but still my HBA1C is always around
vinodbachu
in
Diabetes India
9 years ago
Integrating Emerging Evidence Into the Management of CLL Patients; what leading CLL experts recommend in 4 case studies
In this downloadable slideset from a symposium conducted at the NCCN 10th Annual Congress: Hematologic Malignancies™, a group of expert faculty explore the current data and provide their recommendations for 4 CLL cases: [i]1: Managing Otherwise Healthy Patients with CLL 2: Treatment Considerations for
In this downloadable slideset from a symposium conducted at the NCCN 10th Annual Congress: Hematologic Malignancies™, a group of expert faculty explore the current data and provide their recommendations for 4 CLL cases: [i]1: Managing Otherwise Healthy Patients with CLL 2: Treatment Considerations for
AussieNeil
Partner
in
CLL Support
9 years ago
Fish Test Results and Treatment Decisions
Hi everyone. I was with my consultant haematologist today and my FISH test results show no abnormalities - I didn't think that this was even possible. On the face of it, its good news, but has anyone else had such a result? I haven't been tested re mutated / unmutated status - seemingly not available
Hi everyone. I was with my consultant haematologist today and my FISH test results show no abnormalities - I didn't think that this was even possible. On the face of it, its good news, but has anyone else had such a result? I haven't been tested re mutated / unmutated status - seemingly not available
KateEvaLen
in
CLL Support
9 years ago
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