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CLL Treatment Advice/Recommendations/Etc For Newbie
After monitoring for 1 year, my doc has recommended that I participate in Trial #EA9161, a 19-month program using ibrutinib, obinutuzumab, & venetoclax. I am a 52-yr-old male with no experience in this arena and am seeking all the advice/info I can get (especially first-hand, or very close to it).
After monitoring for 1 year, my doc has recommended that I participate in Trial #EA9161, a 19-month program using ibrutinib, obinutuzumab, & venetoclax. I am a 52-yr-old male with no experience in this arena and am seeking all the advice/info I can get (especially first-hand, or very close to it).
username-the-dude
in
CLL Support
4 years ago
Mutated and unmutated cll for dummies
When told I had chronic lymphocytic leukemia (cll) four years ago, all I heard was "leukemia". Google soon became my best friend and worst enemy. I just wanted to find out how long I had to live. My travels on the learning curve of cll were slow with many wrong turns. I figured out chronic leukemia
When told I had chronic lymphocytic leukemia (cll) four years ago, all I heard was "leukemia". Google soon became my best friend and worst enemy. I just wanted to find out how long I had to live. My travels on the learning curve of cll were slow with many wrong turns. I figured out chronic leukemia
cajunjeff
in
CLL Support
4 years ago
Comparative analysis of targeted novel therapies (ibrutinib vs. venetoclax) in relapsed, refractory CLL (Feb 2020)
"To date, no prospective trials have directly compared ibrutinib with venetoclax as NA1 in R/R CLL. It remains a key unanswered question as to which of these two NAs optimises the balance of safety and efficacy when utilized as the NA1 in R/R CLL. To address this, we report a large, international study
"To date, no prospective trials have directly compared ibrutinib with venetoclax as NA1 in R/R CLL. It remains a key unanswered question as to which of these two NAs optimises the balance of safety and efficacy when utilized as the NA1 in R/R CLL. To address this, we report a large, international study
avzuclav
in
CLL Support
4 years ago
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Three-drug combination reduces COPD patient mortality.
Once-daily treatment of patients with chronic obstructive pulmonary disease (COPD) with an inhaler combining fluticasone furoate (FF), umeclidinium (UMEC) and vilanterol (VI) reduced all-cause mortality by 42 percent, according to new research published online in the American Thoracic Society’s American
Once-daily treatment of patients with chronic obstructive pulmonary disease (COPD) with an inhaler combining fluticasone furoate (FF), umeclidinium (UMEC) and vilanterol (VI) reduced all-cause mortality by 42 percent, according to new research published online in the American Thoracic Society’s American
2greys
in
Lung Conditions Community Forum
4 years ago
Life with cll. Another new concern.
Hi everyone, My last post was three weeks ago just after I had my tonsillectomy. And unfortunately today I got the results. It turns out my abnormal tonsils were full of cll cells. Or as my surgeon said loaded with cancer cells. Has anyone else here had the same experience or results? He recommended
Hi everyone, My last post was three weeks ago just after I had my tonsillectomy. And unfortunately today I got the results. It turns out my abnormal tonsils were full of cll cells. Or as my surgeon said loaded with cancer cells. Has anyone else here had the same experience or results? He recommended
Suzuki1000
in
CLL Support
4 years ago
March 7 2020 CLL PATIENT AND CAREGIVER EDUCATIONAL FORUM Saturday 8:00am - 12:30pm Rockefeller Auditorium 430 East 67th St Manhattan
To register: https://newyork2020.questionpro.com CLL Society Inc. • P. O. Box 1390 • Claremont CA 91711 • https://cllsociety.org 2019-2020 CLL PATIENT AND CAREGIVER EDUCATIONAL FORUM In partnership with Memorial Sloan Kettering Cancer Center, the CLL Society invites you to attend our informational CLL
To register: https://newyork2020.questionpro.com CLL Society Inc. • P. O. Box 1390 • Claremont CA 91711 • https://cllsociety.org 2019-2020 CLL PATIENT AND CAREGIVER EDUCATIONAL FORUM In partnership with Memorial Sloan Kettering Cancer Center, the CLL Society invites you to attend our informational CLL
lankisterguy
Volunteer
in
CLL Support
4 years ago
What causes these horrific night sweats and does everyone get them ?
Hi All, 3 years on W&W and finally my time has arrived for treatment within the next 5 to 6 weeks. Chemo. Not really shocked just a bit numb really as just got used to the W&W scenario if you ever can. Positive about my treatment anxious about how it will feel. However I’ll be glad to get on with it
Hi All, 3 years on W&W and finally my time has arrived for treatment within the next 5 to 6 weeks. Chemo. Not really shocked just a bit numb really as just got used to the W&W scenario if you ever can. Positive about my treatment anxious about how it will feel. However I’ll be glad to get on with it
Roseneath69
in
CLL Support
4 years ago
Australians have your say in getting CLL medicines approved
Hi everyone, I am just reaching out to Aussies on this site to let you know that the following 2 treatments are being considered in March for public funding in Australia. If you would like to make a carer or patient submission about how important the availability of these therapies are for all eligible
Hi everyone, I am just reaching out to Aussies on this site to let you know that the following 2 treatments are being considered in March for public funding in Australia. If you would like to make a carer or patient submission about how important the availability of these therapies are for all eligible
lymphomaoz
in
CLL Support
4 years ago
Can CLL treatment or CLL cause bladder cancer?
I had CLL (in remission) and was on IBR for 2 years. I recently have been treated for bladder cancer during the last 12 months or so and after treatment irradiated the cancer with one small reoccurrence . My question is has anybody experienced bladder cancer after getting treatment with Ibrutinib or
I had CLL (in remission) and was on IBR for 2 years. I recently have been treated for bladder cancer during the last 12 months or so and after treatment irradiated the cancer with one small reoccurrence . My question is has anybody experienced bladder cancer after getting treatment with Ibrutinib or
barger1951
in
CLL Support
4 years ago
FISH testing and chromosomes for dummies
I am betting most of us had a cll tabula rasa at diagnosis, that is, our knowledge of cll was a blank slate. When told I had cll, all I heard was the word "leukemia". Google became my best friend and worst enemy. One of the first things I learned was that cll was not as bad as some other leukemias.
I am betting most of us had a cll tabula rasa at diagnosis, that is, our knowledge of cll was a blank slate. When told I had cll, all I heard was the word "leukemia". Google became my best friend and worst enemy. One of the first things I learned was that cll was not as bad as some other leukemias.
cajunjeff
in
CLL Support
4 years ago
Why Is the Immunoglobulin Heavy Chain Gene Mutation Status a Prognostic Indicator in CLL? - Dr Keating
A complex but interesting read Acta Haematol August 2018;140:51–54 The immunoglobulin heavy chain gene (IgHV) mutation status correlates with the clinical outcome of patients with CLL treated with chemoimmunotherapy. Why the survival rate of patients with unmutated IgHV is worse than that of patients
A complex but interesting read Acta Haematol August 2018;140:51–54 The immunoglobulin heavy chain gene (IgHV) mutation status correlates with the clinical outcome of patients with CLL treated with chemoimmunotherapy. Why the survival rate of patients with unmutated IgHV is worse than that of patients
Jm954
Administrator
in
CLL Support
4 years ago
Quitting smoking
Hi everyone.I have struggled to stop smoking as being diagnosed with copd year and half ago was a shock I never even heard of it. I had lung function test at the time which was I mild I not had one since due to my council cut backs so i cant even keep an eye on my lungs..I have now after year and half
Hi everyone.I have struggled to stop smoking as being diagnosed with copd year and half ago was a shock I never even heard of it. I had lung function test at the time which was I mild I not had one since due to my council cut backs so i cant even keep an eye on my lungs..I have now after year and half
Madonna1
in
Lung Conditions Community Forum
4 years ago
going downhill
My husband has CLL dx in 2013. Ok until this last year. Now has gone downhill. He is not to computer friendly so I am doing this. He was started on VENETOCLAX and is on week 3 of the ramping up. Extremely fatigued. Poor appetite. Sleeps a lot. The doc thinks this is a combo of the CLL and the s/e of
My husband has CLL dx in 2013. Ok until this last year. Now has gone downhill. He is not to computer friendly so I am doing this. He was started on VENETOCLAX and is on week 3 of the ramping up. Extremely fatigued. Poor appetite. Sleeps a lot. The doc thinks this is a combo of the CLL and the s/e of
Gogldn
in
CLL Support
4 years ago
Hair transplant and CLL
Has anyone here with CLL had a hair transplant (after early stage diagnosis?) Is that safe or crazy? I'm relatively young to have it and I guess a bit vain but am not sure if the CLL makes no difference or the trauma encourages it.....
Has anyone here with CLL had a hair transplant (after early stage diagnosis?) Is that safe or crazy? I'm relatively young to have it and I guess a bit vain but am not sure if the CLL makes no difference or the trauma encourages it.....
Research123
in
CLL Support
4 years ago
1 week update into Imbruvica
My first 7 days of Imbruvica 420 mg haven't been as bad as expected. No fatigue to speak of. The only side effects are temporary stomachs which I can remedy with yogurt or digestive enzymes, and temporary intestinal cramps.
My first 7 days of Imbruvica 420 mg haven't been as bad as expected. No fatigue to speak of. The only side effects are temporary stomachs which I can remedy with yogurt or digestive enzymes, and temporary intestinal cramps.
12Caine12
in
CLL Support
4 years ago
Need some info please.
Hi there, I am a 75 year old female. From Adelaide in South Australia. I have still managed to manage all my everyday life,drive and I volunteer 20 hours a week for a goodwill shop. I was diagnosed with cll just over 2 years ago. I saw a haematologist twice and put on watch and wait. I opted to see
Hi there, I am a 75 year old female. From Adelaide in South Australia. I have still managed to manage all my everyday life,drive and I volunteer 20 hours a week for a goodwill shop. I was diagnosed with cll just over 2 years ago. I saw a haematologist twice and put on watch and wait. I opted to see
JanEyre
in
CLL Support
4 years ago
Polyp removal booked
I have found a clinic that will just do a hysteroscopy/polyp removal with not seeing them for any other services. Had an initial consultation there this week, and they have booked me in for the 7th January. Great news! Still over three weeks away, so I'm going to struggle with that length of time, but
I have found a clinic that will just do a hysteroscopy/polyp removal with not seeing them for any other services. Had an initial consultation there this week, and they have booked me in for the 7th January. Great news! Still over three weeks away, so I'm going to struggle with that length of time, but
ttcemmie
in
Fertility Network UK
5 years ago
Generosity
I’m doing the worlds greatest shave here in Australia for my husband and all you CLLers. The generosity of people- especially in light of the drought and bushfire appeals - is astounding. $4,000 in 2 weeks. The Leukaemia Foundation is aiming for zero deaths from blood cancer by 2035. It sure feels achievable
I’m doing the worlds greatest shave here in Australia for my husband and all you CLLers. The generosity of people- especially in light of the drought and bushfire appeals - is astounding. $4,000 in 2 weeks. The Leukaemia Foundation is aiming for zero deaths from blood cancer by 2035. It sure feels achievable
catnapcrew
in
CLL Support
5 years ago
Survey for CLL patients having taken Venetoclax or Acalabrutinib
CLL/SLL Patient Survey If you have CLL or SLL and have been treated with the following therapies, you can help by completing our survey: Venetoclax (Venclexta) + obinutuzumab (Gazyva) for first-line treatment of CLL/SLL Acalabrutinib (Calquence) with or without obinutuzumab (Gazyva) for first-line
CLL/SLL Patient Survey If you have CLL or SLL and have been treated with the following therapies, you can help by completing our survey: Venetoclax (Venclexta) + obinutuzumab (Gazyva) for first-line treatment of CLL/SLL Acalabrutinib (Calquence) with or without obinutuzumab (Gazyva) for first-line
cllpag_canada
in
CLL Support
5 years ago
ASH 2019 CLL highlights and 'hot' topics - Drs Nicole Lamanna & Florence Cymbalista
Prof Nicole Lamanna - ASH 2019 - Maturing CLL clinical trial data Dr. Nicole Lamanna, Associate Clinical Professor of haematological malignancies at Columbia University Medical Centre discusses the maturing CLL clinical trial data presented at ASH 2019. Phenomenal 3 and 4 year results from trials
Prof Nicole Lamanna - ASH 2019 - Maturing CLL clinical trial data Dr. Nicole Lamanna, Associate Clinical Professor of haematological malignancies at Columbia University Medical Centre discusses the maturing CLL clinical trial data presented at ASH 2019. Phenomenal 3 and 4 year results from trials
HAIRBEAR_UK
Administrator
in
CLL Support
5 years ago
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