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85 year old not coping with nor responding to treatment
Hi, I am new. My Dad has CLL which has just become symptomatic after 5 years. He has had 3 treatments of Obinutuzimab and Chlorambucil , the first one made him so ill he was rushed to ICU. Now he seems to have hemalosis, as his RBC is very low at 70 and will not increase even after 8 blood transfusions
Hi, I am new. My Dad has CLL which has just become symptomatic after 5 years. He has had 3 treatments of Obinutuzimab and Chlorambucil , the first one made him so ill he was rushed to ICU. Now he seems to have hemalosis, as his RBC is very low at 70 and will not increase even after 8 blood transfusions
TKB2020
in
CLL Support
4 years ago
Hyperbaric oxygen therapy...
I just read about a trial of volunteers in Israel who took hyperbaric oxygen therapy (HBOT) for 90 minutes a day, 5 days a week, for 3 months, and the results were apparently nothing less than extraordinary in reversing the ageing process. I then briefly checked the internet and found that dating back
I just read about a trial of volunteers in Israel who took hyperbaric oxygen therapy (HBOT) for 90 minutes a day, 5 days a week, for 3 months, and the results were apparently nothing less than extraordinary in reversing the ageing process. I then briefly checked the internet and found that dating back
Pogee
in
CLL Support
4 years ago
Newly Diagnosed, W&W, yearly visits?
Hi i was recently diagnosed a week ago, my MBL crossed over the 5000 threshold, and now officially RAI 0. Flow/FISH was done, im 13q deleted, ZAP70 and CD38 negative. Doc (oncologist) said it most likely be 10-15 years before i would need treatment, and said he is putting me on yearly checkups. I know
Hi i was recently diagnosed a week ago, my MBL crossed over the 5000 threshold, and now officially RAI 0. Flow/FISH was done, im 13q deleted, ZAP70 and CD38 negative. Doc (oncologist) said it most likely be 10-15 years before i would need treatment, and said he is putting me on yearly checkups. I know
Freeskier989
in
CLL Support
4 years ago
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Kidney Biopsy and igA nephropathy (UPDATE POST-BIOPSY)
Hi. I am due for a kidney biopsy next week and wasn't given much tips on what to prepare or not do post biopsy other than stay in bed for 6hrs. Doctor told me that I might have igAn based on my proteinuria and high hematuria. I am very concerned as I am only 24 years old and a female trying to start
Hi. I am due for a kidney biopsy next week and wasn't given much tips on what to prepare or not do post biopsy other than stay in bed for 6hrs. Doctor told me that I might have igAn based on my proteinuria and high hematuria. I am very concerned as I am only 24 years old and a female trying to start
agirlwithhope95
in
Early CKD Support
4 years ago
Liquid e-cigarette flavorings measurably injure lungs.
Known for their appetizing flavors, such as bubblegum, banana and strawberry, e-cigarettes continue to grow in popularity around the world. Promoted by makers as a “healthy” alternative to regular tobacco cigarettes, researchers are finding e-cigarettes, or vaping, still result in injury to the lungs
Known for their appetizing flavors, such as bubblegum, banana and strawberry, e-cigarettes continue to grow in popularity around the world. Promoted by makers as a “healthy” alternative to regular tobacco cigarettes, researchers are finding e-cigarettes, or vaping, still result in injury to the lungs
2greys
in
Lung Conditions Community Forum
4 years ago
SUGGESTIONS?
I started treatment (B+R) at the end of this past January for 6 months, the results were very good and my oncologist said he would probably start me on a 2 year maintenance program in 3 months of Rituximab every 3 months. I went back to see him after the 3 months and most of my blood work was good except
I started treatment (B+R) at the end of this past January for 6 months, the results were very good and my oncologist said he would probably start me on a 2 year maintenance program in 3 months of Rituximab every 3 months. I went back to see him after the 3 months and most of my blood work was good except
laldoroty
in
CLL Support
4 years ago
Richter Transformation - Update
Hi everybody how are you? I'd like to put you all in my current state, after full remission. As you know, they treated me with R-CHOP and did not transplant me. It was not necessary as no masses were found on my body when I did the pet scan. I was taking ibrutinib when I was diagnosed with Ricther. I
Hi everybody how are you? I'd like to put you all in my current state, after full remission. As you know, they treated me with R-CHOP and did not transplant me. It was not necessary as no masses were found on my body when I did the pet scan. I was taking ibrutinib when I was diagnosed with Ricther. I
Priss69
in
CLL Support
4 years ago
How can you tell how many CLL cells are actually in your blood streams?
My Absolute Lymphocyte Count is at 10214 cells/mm³ is that CLL? I calculated my WBC 16.5 plus LYMPHS% 61.9 %...
My Absolute Lymphocyte Count is at 10214 cells/mm³ is that CLL? I calculated my WBC 16.5 plus LYMPHS% 61.9 %...
Laura3mini
in
CLL Support
4 years ago
CLL Aussie voices study - last call to add your voice to the PEEK study
This is a final call for Australians with CLL, their carers and family members to add their voice and register for the CLL PEEK study, conducted by the Centre for Community Driven Research ( CC-DR).
To register, email administration@cc-dr.org or go to www.cc-dr.org/peek/register/2020aucll
Catherine
This is a final call for Australians with CLL, their carers and family members to add their voice and register for the CLL PEEK study, conducted by the Centre for Community Driven Research ( CC-DR).
To register, email administration@cc-dr.org or go to www.cc-dr.org/peek/register/2020aucll
Catherine
AussieNeil
Partner
in
CLL Support
4 years ago
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
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
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