Search
Search
About
Log in
Join
Experiences with
Colonic polyps
Posts
Communities
2,345 public posts
Filter results
Some good news and hope
A very special day today. My wife Jan was diagnosed with an incurable blood cancer CLL this day 9 years ago age 39. We are in Ireland. After 3 very sick years we were fortunate that she was able to access a clinical trial in the UK and in 2014 started a drug Ibrutinib which targets the cancer. Her
A very special day today. My wife Jan was diagnosed with an incurable blood cancer CLL this day 9 years ago age 39. We are in Ireland. After 3 very sick years we were fortunate that she was able to access a clinical trial in the UK and in 2014 started a drug Ibrutinib which targets the cancer. Her
Irishcll
in
CLL Support
4 years ago
From ana positive in past to ana negative??
I have always been ana positive in the past and my recent one was negative which puzzled the rheumatologist, as I have been suffering from increased inflammation which showed in my bloods. I have been feeling dreadful and she says it's due to increased lupus activity. Has anyone else had this happen
I have always been ana positive in the past and my recent one was negative which puzzled the rheumatologist, as I have been suffering from increased inflammation which showed in my bloods. I have been feeling dreadful and she says it's due to increased lupus activity. Has anyone else had this happen
Caramia1964
in
LUPUS UK
4 years ago
Night Sweats
I was diagnosed with CLL May of 2018. Still on wait & watch. I am 61. Over the last 40 years I would get periodic night sweats, very randomly. Once a year, then over the last 20 years, I would have a few night sweats year. Over the last 5 years, I get them a few days in a row, then nothing for months
I was diagnosed with CLL May of 2018. Still on wait & watch. I am 61. Over the last 40 years I would get periodic night sweats, very randomly. Once a year, then over the last 20 years, I would have a few night sweats year. Over the last 5 years, I get them a few days in a row, then nothing for months
CouldBworse
in
CLL Support
4 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
CLL Expert Access 2nd Opinion from CLL Society from your home at no cost -unfortunately for USA Residents only
A CLL EXPERT PHYSICIAN CAN GIVE YOU A 2nd OPINION ONLINE AT NO COST TO YOU! APPLY NOW! • Easy to qualify • Easy to apply online • No need to leave your house https://cllsociety.org/cll-society-expert-access/ CLL Society Expert Access™ Program application: https://cllsociety.org/2019-expert-access-start
A CLL EXPERT PHYSICIAN CAN GIVE YOU A 2nd OPINION ONLINE AT NO COST TO YOU! APPLY NOW! • Easy to qualify • Easy to apply online • No need to leave your house https://cllsociety.org/cll-society-expert-access/ CLL Society Expert Access™ Program application: https://cllsociety.org/2019-expert-access-start
lankisterguy
Volunteer
in
CLL Support
4 years ago
More post transplant questions😀
More post transplant questions 😀 So dad is still taking small steps slowly but surely forward, he’s on tacrolimus, mychoohelate and prednisalone, he had some swelling in ankles/feet when he came home which went up and down but seem to be staying swollen now, we seen renal team at our local hospital
More post transplant questions 😀 So dad is still taking small steps slowly but surely forward, he’s on tacrolimus, mychoohelate and prednisalone, he had some swelling in ankles/feet when he came home which went up and down but seem to be staying swollen now, we seen renal team at our local hospital
Jugular1
in
British Liver Trust
4 years ago
Revolution of Chronic Lymphocytic Leukemia Therapy: the Chemo-Free Treatment Paradigm
February 2020 A long paper and too much information to be able to summarise in this post but a nice account of current treatments, response rates, trial details and issues of resistance/intolerance. "[i]Over the last years, targeted therapy with small molecule inhibitors and antibodies has much replaced
February 2020 A long paper and too much information to be able to summarise in this post but a nice account of current treatments, response rates, trial details and issues of resistance/intolerance. "[i]Over the last years, targeted therapy with small molecule inhibitors and antibodies has much replaced
Jm954
Administrator
in
CLL Support
4 years ago
Time-to-progression after front-line FCR for CLL: a retrospective, multicohort study
It has been known for some time that FCR can produce very long remissions (perhaps cures) for some patients with mutated CLL. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4760129/ This study looks at unmutated patients and could be an important study for CLL patients or, on the other hand, completely
It has been known for some time that FCR can produce very long remissions (perhaps cures) for some patients with mutated CLL. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4760129/ This study looks at unmutated patients and could be an important study for CLL patients or, on the other hand, completely
Jm954
Administrator
in
CLL Support
4 years ago
Do all novel drugs "clear" CLL cells in blood, lymph nodes and bone marrow?
Do all novel drugs (non-chemotherapy) "clear" CLL cells in blood, lymph nodes and bone marrow? Or perhaps some drugs clear CLL cells only in blood, but are unable to get into bone marrow?
Do all novel drugs (non-chemotherapy) "clear" CLL cells in blood, lymph nodes and bone marrow? Or perhaps some drugs clear CLL cells only in blood, but are unable to get into bone marrow?
mantana
in
CLL Support
4 years ago
When CLL Meets COVID-19
When CLL Meets COVID-19 CLL Society is pleased to share with you the preeminent Spanish physician Prof. Dr. Emili Montserrat’s excellent commentary, recently published in BLOOD, reviewing two large studies on SARS-Cov2 infections in CLL patients. Prof. Dr. Emili Montserrat is one of the most prestigious
When CLL Meets COVID-19 CLL Society is pleased to share with you the preeminent Spanish physician Prof. Dr. Emili Montserrat’s excellent commentary, recently published in BLOOD, reviewing two large studies on SARS-Cov2 infections in CLL patients. Prof. Dr. Emili Montserrat is one of the most prestigious
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
CLL Society's October 10th Virtual Global Patient Educational Forum, featuring Dr. John Byrd speaking on Clinical Trials!
CLL Society's October 10th Virtual Global Patient Educational Forum, featuring Dr. John Byrd speaking on Clinical Trials! While Dr. John Byrd is well known for his clinical trials that have brought ground-breaking drugs to CLL and other blood cancers, he is equally well respected for always PUTTING PATIENTS
CLL Society's October 10th Virtual Global Patient Educational Forum, featuring Dr. John Byrd speaking on Clinical Trials! While Dr. John Byrd is well known for his clinical trials that have brought ground-breaking drugs to CLL and other blood cancers, he is equally well respected for always PUTTING PATIENTS
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
Any light at the end of this long ‘waiting’ tunnel?
Hi everyone , I was just wondering how people have found getting back on track after the Covid thing. I have had a nightmare so am just getting it all out of my system in what might come across as a long whining post ( apologies if it sounds like this) - I have had numerous symptoms that I have struggled
Hi everyone , I was just wondering how people have found getting back on track after the Covid thing. I have had a nightmare so am just getting it all out of my system in what might come across as a long whining post ( apologies if it sounds like this) - I have had numerous symptoms that I have struggled
Guitar1986
in
Endometriosis UK
4 years ago
Wanting to cut premature deaths by almost 15% gets you the label of being a health nut!
Smokers could be forced to get their cigarettes from pharmacies using a prescription under a new plan from anti smoking advocates. The hardline proposal is part of a university's plan to end smoking forever, and includes cutting off cigarette sales permanently to anyone born after a certain date. Associate
Smokers could be forced to get their cigarettes from pharmacies using a prescription under a new plan from anti smoking advocates. The hardline proposal is part of a university's plan to end smoking forever, and includes cutting off cigarette sales permanently to anyone born after a certain date. Associate
2greys
in
Lung Conditions Community Forum
4 years ago
COVID risk to CLL patients with the reopening of schools
Hello all We are wondering if any other CLL patients are having the same issue or taking the same stand as we are here in Ireland. As some of you know my wife Jan was diagnosed in 2011 age 39 after 3 years very sick she was fortunate to get on an Ibrutinib trial in Leeds in 2014. Thankfully bloods
Hello all We are wondering if any other CLL patients are having the same issue or taking the same stand as we are here in Ireland. As some of you know my wife Jan was diagnosed in 2011 age 39 after 3 years very sick she was fortunate to get on an Ibrutinib trial in Leeds in 2014. Thankfully bloods
Irishcll
in
CLL Support
4 years ago
(Imbruvica), Ibrutinib, To live or to die
Hi, I have a 50-years old friend who has had CLL since 2013. He had a relapse in early 2020. When he was close to death, he was hospitalized to a private hospital in Turkey and was prescribed Imbruvica from Janssen company. Since he does not have insurance, he bought the medicine himself and spent almost
Hi, I have a 50-years old friend who has had CLL since 2013. He had a relapse in early 2020. When he was close to death, he was hospitalized to a private hospital in Turkey and was prescribed Imbruvica from Janssen company. Since he does not have insurance, he bought the medicine himself and spent almost
Green202
in
CLL Support
4 years ago
Getting diagnosed
I am 40 years old and have dealt with chronic pelvic pain for years. I am in the US, but I enjoy this forum and I hope it's okay to post here. I'll give you a bit of my history. In 2017, I had several uterine polyps removed. At the time, my surgeon wanted to explore for endometriosis, but I could
I am 40 years old and have dealt with chronic pelvic pain for years. I am in the US, but I enjoy this forum and I hope it's okay to post here. I'll give you a bit of my history. In 2017, I had several uterine polyps removed. At the time, my surgeon wanted to explore for endometriosis, but I could
desertkelp
in
Endometriosis UK
4 years ago
Disease Flare During Temporary Interruption of Ibrutinib Therapy in Patients with Chronic Lymphocytic Leukemia ( CLL ) - Pseudo Richters
Several of us have reported our CLL symptoms have come roaring back after discontinuing Ibrutinib/imbruvica with even a few cases of what's been termed pseudo-Richters, where some patients appear to have even undergone unnecessary R-CHOP chemoimmunotherapy as our member Priss69 has reported:
Several of us have reported our CLL symptoms have come roaring back after discontinuing Ibrutinib/imbruvica with even a few cases of what's been termed pseudo-Richters, where some patients appear to have even undergone unnecessary R-CHOP chemoimmunotherapy as our member Priss69 has reported:
AussieNeil
Partner
in
CLL Support
4 years ago
Resistance to Ibrutinib
Hi everyone this is my first post. I'm looking for some advice, reassurance please. I'm tp53 mutated and have been on ibrutinib 7 months, which is not working.I saw my consultant on Thursday and the plan is to continue for another 3 months to see if it starts working. My lymphocytes remain at 300. Has
Hi everyone this is my first post. I'm looking for some advice, reassurance please. I'm tp53 mutated and have been on ibrutinib 7 months, which is not working.I saw my consultant on Thursday and the plan is to continue for another 3 months to see if it starts working. My lymphocytes remain at 300. Has
Reddg
in
CLL Support
4 years ago
CLL Treatments Today: What Should I Know? October 3, 2020 at 9:00 AM Pacific Time / 12:00 PM Eastern Time
https://mailchi.mp/patientpower.info/your-patient-powered-cll-news-1299504?e=8acc3ddacd Saturday, October 3, 2020 at 9:00 AM Pacific Time / 12:00 PM Eastern Time This 3-hour program will take you through a CLL 101, 201 and 301 class hosted by CLL patient advocates and experts from Cleveland Clinic and
https://mailchi.mp/patientpower.info/your-patient-powered-cll-news-1299504?e=8acc3ddacd Saturday, October 3, 2020 at 9:00 AM Pacific Time / 12:00 PM Eastern Time This 3-hour program will take you through a CLL 101, 201 and 301 class hosted by CLL patient advocates and experts from Cleveland Clinic and
lankisterguy
Volunteer
in
CLL Support
4 years ago
Today is World Leukemia Day
Dear friends Today, patients, patient groups, clinical groups and organisations across the world are uniting to raise awareness of leukaemia. By publicising the signs and symptoms we are working together to help leukaemia patients get diagnosed and provide better outcomes for them. You can make
Dear friends Today, patients, patient groups, clinical groups and organisations across the world are uniting to raise awareness of leukaemia. By publicising the signs and symptoms we are working together to help leukaemia patients get diagnosed and provide better outcomes for them. You can make
HAIRBEAR_UK
Administrator
in
CLL Support
4 years ago
Newly diagnosed and hoping for a bit of advice
Hi, Thankyou to all those who have put so much into this site. Its been a huge help in the last few days since I started trying to find out more about SLL. I'm a 46 year old male in the UK who felt ill (exhausted, night sweats, generally weak and achy muscles) for around 2 years with the symptoms very
Hi, Thankyou to all those who have put so much into this site. Its been a huge help in the last few days since I started trying to find out more about SLL. I'm a 46 year old male in the UK who felt ill (exhausted, night sweats, generally weak and achy muscles) for around 2 years with the symptoms very
Pdaquinas
in
CLL Support
4 years ago
1
...
30
31
32
...
100
Next page
10
20
30
40
50
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
CLL Support
1437 results
Lung Conditions Community Forum
216 results
Diabetes India
81 results
View top 10 communities
Sort by
Most Relevant
Newest