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Awake worrying about your CLL? Stop It! Apply for a FREE online 2nd Opinion with a top CLL Expert.
CLL Society Expert Access™ Program: Awake worrying about your CLL? Apply for a FREE online 2nd Opinion with a top CLL Expert! Here at the CLL Society, we believe that access to CLL expert care is critical for every patient to receive his or her best possible care. Access to a CLL expert provides proven
CLL Society Expert Access™ Program: Awake worrying about your CLL? Apply for a FREE online 2nd Opinion with a top CLL Expert! Here at the CLL Society, we believe that access to CLL expert care is critical for every patient to receive his or her best possible care. Access to a CLL expert provides proven
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
"The Future of CAR-T Therapy: Can CAR-T Cure CLL?” Don’t miss the excitement Nov 17 with Dr. Fraietta, a true pioneer in CAR-T therapy!
CLL Society Webinar: Prepare to be amazed! Nov. 17th CAR-T Webinar "The Future of CAR-T Therapy: Can CAR-T Cure CLL?” CAR-T therapy is not yet approved in CLL. However, if you were to receive it in the future a living drug would be made from your own t-cells, re-engineered to recognize surface markers
CLL Society Webinar: Prepare to be amazed! Nov. 17th CAR-T Webinar "The Future of CAR-T Therapy: Can CAR-T Cure CLL?” CAR-T therapy is not yet approved in CLL. However, if you were to receive it in the future a living drug would be made from your own t-cells, re-engineered to recognize surface markers
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
Biopsy results
Hi, my boyfriend has CLL and is struggling with his hemoglobin and neutropenia. His numbers are not getting better. Doctors had to give him multiple blood transfusions and neupogen shot. Even with those, the numbers remain low. He is under Venetoclax treatment. Next week will have a bone marrow biopsy
Hi, my boyfriend has CLL and is struggling with his hemoglobin and neutropenia. His numbers are not getting better. Doctors had to give him multiple blood transfusions and neupogen shot. Even with those, the numbers remain low. He is under Venetoclax treatment. Next week will have a bone marrow biopsy
Gile
in
CLL Support
4 years ago
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CLL cells accumulate genetic aberrations prior to the first therapy even in outwardly inactive disease phase
No definite conclusions from this paper about genetic evolution and disease drivers but interesting.
[i]"Most CLL cases are diagnosed during the inactive disease phase. Clonal evolution is considered a key factor in CLL progression and relapse after treatment. A large number of frequently mutated
No definite conclusions from this paper about genetic evolution and disease drivers but interesting.
[i]"Most CLL cases are diagnosed during the inactive disease phase. Clonal evolution is considered a key factor in CLL progression and relapse after treatment. A large number of frequently mutated
Jm954
Administrator
in
CLL Support
4 years ago
MBL numbers going up
Just had my yearly labs and my WBC increased from 10 to19 and my absolute lymphocytes 7.6 to 12. Everythng else looked pretty good, normal range. Could this be a blip (just got over bad a-topical dermatitis[i] [/i] on three spots for weeks
before resolving a week before labs. Any cause for concern
Just had my yearly labs and my WBC increased from 10 to19 and my absolute lymphocytes 7.6 to 12. Everythng else looked pretty good, normal range. Could this be a blip (just got over bad a-topical dermatitis[i] [/i] on three spots for weeks
before resolving a week before labs. Any cause for concern
Freeskier989
in
CLL Support
4 years ago
Green Tea Extract and Curcumin
Hi All - I’ve been taking green tea extract and curcumin capsules daily since I was diagnosed 18 months ago. I have no symptoms and my blood levels have been very stable. Has anyone had experience with those two supplements?
Hi All - I’ve been taking green tea extract and curcumin capsules daily since I was diagnosed 18 months ago. I have no symptoms and my blood levels have been very stable. Has anyone had experience with those two supplements?
LouisAmbrose
in
CLL Support
4 years ago
Richter's Syndrome
Just diagnosed. I'm 46. Have biopsy tomorrow to determine treatment options. This is really freaking me out. Is this really a death sentence? Need feedback from others that have gone though it
Just diagnosed. I'm 46. Have biopsy tomorrow to determine treatment options. This is really freaking me out. Is this really a death sentence? Need feedback from others that have gone though it
ishudderz
in
CLL Support
4 years ago
A webinar for patients - practical workshop 'Coping with Fatigue' Oct 28th at 4pm
Hi all, this is a challenge that many of us have to manage. Please join us for this participative webinar Register > http://bit.ly/FatigueWebinar https://pic.twitter.com/44DMhhS46y Leukaemia Care are co – hosting this webinar with Lymphoma Action to support patients with understanding and managing
Hi all, this is a challenge that many of us have to manage. Please join us for this participative webinar Register > http://bit.ly/FatigueWebinar https://pic.twitter.com/44DMhhS46y Leukaemia Care are co – hosting this webinar with Lymphoma Action to support patients with understanding and managing
HAIRBEAR_UK
Founder Admin
in
CLL Support
4 years ago
Vitamin D and Green Tea
Big thanks to this site as I’ve found a new Haematologist recommended here with whom I am 😊 He suggested three cups of Green Tea per day so I’ve included it in my everyday life and will be very interested to see blood test results next year. I have one early morning then make up a two bag mug which
Big thanks to this site as I’ve found a new Haematologist recommended here with whom I am 😊 He suggested three cups of Green Tea per day so I’ve included it in my everyday life and will be very interested to see blood test results next year. I have one early morning then make up a two bag mug which
YelvertonDevon
in
CLL Support
4 years ago
Update from my Appointment
Hi All, I want to thank everyone for the kind words of support, good thoughts, and prayers for my appointment with a new specialist yesterday. I appreciate it so much. Here’s what I learned: 1.I liked the team a great deal. Everyone was very kind, really listened to me, and had excellent information
Hi All, I want to thank everyone for the kind words of support, good thoughts, and prayers for my appointment with a new specialist yesterday. I appreciate it so much. Here’s what I learned: 1.I liked the team a great deal. Everyone was very kind, really listened to me, and had excellent information
Moonmyst
in
CLL Support
4 years ago
Vitamins for CLL
I've always been a firm believer that God provides a means in the natural world to help heal ourselves mentally and physically. Along with my chemotherapy medication Imbruvica, I'm also taking a combination of Vitamin C, E, and green tea supplements. What other natural occurring vitamins have been
I've always been a firm believer that God provides a means in the natural world to help heal ourselves mentally and physically. Along with my chemotherapy medication Imbruvica, I'm also taking a combination of Vitamin C, E, and green tea supplements. What other natural occurring vitamins have been
PJWheeler
in
CLL Support
4 years ago
Has anybody found that regular running helps with CLL?
I am at the "wait and see" stage with my CLL. When my CLL was first diagnosed in April 2019, the ABS Lymphocyte count in my blood was 68.7. I continued to train for a May 5 marathon and my ABS count improved to 49.5 on May 22. After that, I did not run as much, and my ABS Lymphocyte counts rose and
I am at the "wait and see" stage with my CLL. When my CLL was first diagnosed in April 2019, the ABS Lymphocyte count in my blood was 68.7. I continued to train for a May 5 marathon and my ABS count improved to 49.5 on May 22. After that, I did not run as much, and my ABS Lymphocyte counts rose and
HowardR
in
CLL Support
4 years ago
CLL Australian Webinar 21 October 2020. Keynote speaker Prof Peter Hillmen, Leeds UK. Interview of Sharon Winton CEO Lymphoma Australia, Q&A
Join MC
Julie McCrossin
and keynote speaker - the world renowned clinician and researcher -
Prof. Peter Hillmen
from St James’s University Hospital Leeds, for a webinar that
promises
to be energetic and full of new information. People from all countries are welcome to join the webinar
Join MC
Julie McCrossin
and keynote speaker - the world renowned clinician and researcher -
Prof. Peter Hillmen
from St James’s University Hospital Leeds, for a webinar that
promises
to be energetic and full of new information. People from all countries are welcome to join the webinar
AussieNeil
Partner
in
CLL Support
4 years ago
Sleep problems
I am late stage four kidney disease with a GFR of 20. Recently I have had difficulties sleeping at night and wonder if that is common with people at my stage. If so what do you do about it as it adds to the overall feeling of fatigue. My doctor says I am too old for sleeping pills whatever that means
I am late stage four kidney disease with a GFR of 20. Recently I have had difficulties sleeping at night and wonder if that is common with people at my stage. If so what do you do about it as it adds to the overall feeling of fatigue. My doctor says I am too old for sleeping pills whatever that means
Oceanviewed
in
Kidney Dialysis
4 years ago
Mirtazapine
I've been doing some research on taking Mirtazapine when you suffer with COPD. I am quite anxious & feel quite stressed & last year while having a bad time with my COPD my Dr prescribed Mirtazapine, while taking this I felt I had more breath & felt able to cope better. Has anyone else tried this medication
I've been doing some research on taking Mirtazapine when you suffer with COPD. I am quite anxious & feel quite stressed & last year while having a bad time with my COPD my Dr prescribed Mirtazapine, while taking this I felt I had more breath & felt able to cope better. Has anyone else tried this medication
Jansy16
in
Lung Conditions Community Forum
4 years ago
Night Sweats
Hello CLL Community Friends. I hope you are all doing well, remaining healthy and safe, especially during these unprecedented crazy times. I was diagnosed with CLL in May of 2018. I've been on wait and watch. Just had a visit with my hematology oncologist last week. My numbers look good and my appointment
Hello CLL Community Friends. I hope you are all doing well, remaining healthy and safe, especially during these unprecedented crazy times. I was diagnosed with CLL in May of 2018. I've been on wait and watch. Just had a visit with my hematology oncologist last week. My numbers look good and my appointment
CouldBworse
in
CLL Support
4 years ago
VenR in Relapsed CLL: 4-Year Results and Evaluation of Impact of Genomic Complexity and Gene Mutations from MURANO 3 study
This is an important evaluation and insight into how your CLL profile affects your response to VR in relapsed and refractory CLL. Sadly it looks like bad genetics is still relatively bad news in terms of PFS even on VenR. "[i]In previous analyses of the MURANO study, fixed-duration venetoclax plus rituximab
This is an important evaluation and insight into how your CLL profile affects your response to VR in relapsed and refractory CLL. Sadly it looks like bad genetics is still relatively bad news in terms of PFS even on VenR. "[i]In previous analyses of the MURANO study, fixed-duration venetoclax plus rituximab
Jm954
Administrator
in
CLL Support
4 years ago
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
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