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Good end to a bad year... My MRD Results are in!
As many of you know, I enrolled in a clinical trial for experimental treatment with the goal to reduce MRD to zero. (Minimal (or Measurable) residual disease Description:Minimal residual disease is the name given to small numbers of leukaemic cells that remain in the person during treatment, or after
As many of you know, I enrolled in a clinical trial for experimental treatment with the goal to reduce MRD to zero. (Minimal (or Measurable) residual disease Description:Minimal residual disease is the name given to small numbers of leukaemic cells that remain in the person during treatment, or after
MikeHoff
in
CLL Support
3 years ago
CLL and Roundup lawsuit
For those living in the U.S. there's a time sensitive deadline—12/31/2020, I think—to initiate a new legal action brewing against the makers of Roundup for people who have, or have had, CLL. Check out this site: https://justicecounts.com/roundup/roundup-settlement-amounts/ Even more importantly, here's
For those living in the U.S. there's a time sensitive deadline—12/31/2020, I think—to initiate a new legal action brewing against the makers of Roundup for people who have, or have had, CLL. Check out this site: https://justicecounts.com/roundup/roundup-settlement-amounts/ Even more importantly, here's
Pogee
in
CLL Support
3 years ago
COLOFAC
I wonder whether anyone else has experienced problems with Colofac. Although it was helpful with the pain and distension it always culminated in faecal impaction. Merbentyl was found to be more satisfactory but it was removed from my list of medications because of its inhibitive cost. I have managed
I wonder whether anyone else has experienced problems with Colofac. Although it was helpful with the pain and distension it always culminated in faecal impaction. Merbentyl was found to be more satisfactory but it was removed from my list of medications because of its inhibitive cost. I have managed
theomus
in
IBS Network
4 years ago
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2 Physicians with CLL! Join CLL Society for a CLL Society/ FaceBook Live event Dec. 16 and hear their stories live!
2 Physicians with CLL! Join us for a CLL Society/ Facebook Live Event Wednesday Dec. 16. Watch Dr. Brian Koffman and a fellow physician, both with CLL, share stories of the impact of their diagnosis and the strategies they implemented for increasing their knowledge about CLL and arranging proper care
2 Physicians with CLL! Join us for a CLL Society/ Facebook Live Event Wednesday Dec. 16. Watch Dr. Brian Koffman and a fellow physician, both with CLL, share stories of the impact of their diagnosis and the strategies they implemented for increasing their knowledge about CLL and arranging proper care
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
Best use of time while waiting on FISH panel
Hello all, I just found this group, and am so grateful for this type of resource! My husband (41) of 2 months was diagnosed with cll on Friday. I'm so overwhelmed with the terms and information and I don't know where to begin. He is going in this week for the FISH test. My question is, what can we do
Hello all, I just found this group, and am so grateful for this type of resource! My husband (41) of 2 months was diagnosed with cll on Friday. I'm so overwhelmed with the terms and information and I don't know where to begin. He is going in this week for the FISH test. My question is, what can we do
MrsCc6
in
CLL Support
4 years ago
Polyp removal
Hey is anyone else waiting for polyp removal before next round? Covid has pushed my op back even further I have been waiting for 4 months! My consultant will not let me proceed with it out the removal as she seems quite concerned about it even mentioned it could be something nasty. But my dr and the
Hey is anyone else waiting for polyp removal before next round? Covid has pushed my op back even further I have been waiting for 4 months! My consultant will not let me proceed with it out the removal as she seems quite concerned about it even mentioned it could be something nasty. But my dr and the
slupton
in
Fertility Network UK
4 years ago
American Society of Hematology (ASH) 2020 Virtual meeting key updates in the treatment of CLL
The Virtual 62nd Annual American Society of Hematology (ASH) meeting has showcased key updates in the treatment and management of hematological malignancies.
The content of VJHemOnc is intended for healthcare professionals- so these presentations are in "Med-Speak"
Overview of all 20 video
The Virtual 62nd Annual American Society of Hematology (ASH) meeting has showcased key updates in the treatment and management of hematological malignancies.
The content of VJHemOnc is intended for healthcare professionals- so these presentations are in "Med-Speak"
Overview of all 20 video
lankisterguy
Volunteer
in
CLL Support
4 years ago
CLL Society ASH 2020 Day 4 Updates and Wrap-Up Less fun! No hugs. But we are leaving with a lot of treats!
CLL Society ASH 2020 Day 4 Updates and Wrap-Up Dec. 8th was the 4th and final day of ASH 2020, the American Society of Hematology Annual meeting and Exposition. Less fun! No hugs. But we are leaving with a lot of treats and the promise of much more to come. Here is some of what I am taking away from
CLL Society ASH 2020 Day 4 Updates and Wrap-Up Dec. 8th was the 4th and final day of ASH 2020, the American Society of Hematology Annual meeting and Exposition. Less fun! No hugs. But we are leaving with a lot of treats and the promise of much more to come. Here is some of what I am taking away from
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
Cll and covid vaccine uk
Could anyone shed any light about the covid vaccine that is now available in the UK in regards to CLL my dad who is 80 and has stage 4 lymphoma was diagnosed with CLL 2 years ago. He is on watch and wait. They have told him that he is eligible to get covid vaccine in 6 weeks. I am not sure if it is
Could anyone shed any light about the covid vaccine that is now available in the UK in regards to CLL my dad who is 80 and has stage 4 lymphoma was diagnosed with CLL 2 years ago. He is on watch and wait. They have told him that he is eligible to get covid vaccine in 6 weeks. I am not sure if it is
Suskime
in
CLL Support
4 years ago
Scottish Medicines Agency has decided in favour of Venetoclax plus Obintuzumab for some patients.
The SMC has accepted venetoclax in combination with obinutuzumab for use in certain patients. There is a restriction that means that venetoclax may be used together with obinutuzumab as a fixed term treatment in two subgroups of patients with CLL who have not yet had any treatment for their CLL: - patients
The SMC has accepted venetoclax in combination with obinutuzumab for use in certain patients. There is a restriction that means that venetoclax may be used together with obinutuzumab as a fixed term treatment in two subgroups of patients with CLL who have not yet had any treatment for their CLL: - patients
Jm954
Administrator
in
CLL Support
4 years ago
CLL Canada Statement on COVID - 19 Vaccines
From: CLL CANADA [mailto:cllcanada.org@gmail.com] Sent: Saturday, December 5, 2020 12:08 PM Subject: Will COVID vaccines work for CLL patients? Dear CLL Canada members The recent news of successful vaccine trials have many of us wondering whether they will be safe and whether they will work for
From: CLL CANADA [mailto:cllcanada.org@gmail.com] Sent: Saturday, December 5, 2020 12:08 PM Subject: Will COVID vaccines work for CLL patients? Dear CLL Canada members The recent news of successful vaccine trials have many of us wondering whether they will be safe and whether they will work for
lankisterguy
Volunteer
in
CLL Support
4 years ago
Inherited?
CLL Society ASH 2019 Inherited? Does an inherited defect in the germline ATM tumor suppressor gene contribute to the development of CLL? Dr. Jennifer Brown found that one in four CLL patients studied had a variance (mutation) in their ATM gene. https://cllsociety.org/2020/11/ash-2019-dr-jennifer-brown-on-atm-gene-variants-in-chronic-lymphocytic-leukemia-cll
CLL Society ASH 2019 Inherited? Does an inherited defect in the germline ATM tumor suppressor gene contribute to the development of CLL? Dr. Jennifer Brown found that one in four CLL patients studied had a variance (mutation) in their ATM gene. https://cllsociety.org/2020/11/ash-2019-dr-jennifer-brown-on-atm-gene-variants-in-chronic-lymphocytic-leukemia-cll
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
COVID -19 Vaccinations for CLL patients ?
Here is an opinion from my CLL expert doctor copied from https://groups.io/g/CLLSLL/message/30481?reply=1 with permission from the writer Richard Furman MD [i] Date: Thu, 26 Nov 2020 12:51:33 EST We don't know if they are effective nor whether there will be unanticipated side effects in CLL patients
Here is an opinion from my CLL expert doctor copied from https://groups.io/g/CLLSLL/message/30481?reply=1 with permission from the writer Richard Furman MD [i] Date: Thu, 26 Nov 2020 12:51:33 EST We don't know if they are effective nor whether there will be unanticipated side effects in CLL patients
lankisterguy
Volunteer
in
CLL Support
4 years ago
Revisiting Ibrutinib , but then no Venetoclax?
I am a decade into the CLL journey with non mutated 11q deletion - woohoo! I went through FCR in 2014 and am now relapsing, so gearing up for the next round ... As I noted a couple of months ago here in the UK, I was told that if that: 1. if I start with Ibrutinib s my second line treatment, I cannot
I am a decade into the CLL journey with non mutated 11q deletion - woohoo! I went through FCR in 2014 and am now relapsing, so gearing up for the next round ... As I noted a couple of months ago here in the UK, I was told that if that: 1. if I start with Ibrutinib s my second line treatment, I cannot
Me2AsWell
in
CLL Support
4 years ago
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
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
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