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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
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
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Update for UK FLAIR Study Participants who have come to the end of 6 years of Ibrutininb treatment.
"FLAIR and STATIC trial update
[i]Background[/i]
[i]: The development of ibrutinib has had a major positive impact for patients with chronic lymphocytic
leukaemia
(CLL).
"FLAIR and STATIC trial update
[i]Background[/i]
[i]: The development of ibrutinib has had a major positive impact for patients with chronic lymphocytic
leukaemia
(CLL).
Jm954
Administrator
in
CLL Support
4 years ago
Avoiding COVID-19 Infection when you have Chronic Lymphocytic Leukaemia or SLL, by Chaya Venkat of CLL Topics/Updates (speculative article)
A very important post from Chaya: https://updates.clltopics.net/4936-avoiding-covid-19-infection Anyone who knows the dedication Chaya has for those of us with CLL/SLL, will be recommending her latest article as a must read! That's why this is an unlocked post. [i]
**Update**
: This post has resulted
A very important post from Chaya: https://updates.clltopics.net/4936-avoiding-covid-19-infection Anyone who knows the dedication Chaya has for those of us with CLL/SLL, will be recommending her latest article as a must read! That's why this is an unlocked post. [i]
**Update**
: This post has resulted
AussieNeil
Partner
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
Jak2, MPN, all blood count is up! Nutrition and lifestyle changes?
Just came from the doctor. Still no definite result after my BMB. Tests are still incomplete. Some info: Positive for Jak2 , myeloproliferative neoplasms (MPN) Negative for leukemia and lymphoma Ultrasound came back good, no enlarged spleen, organs, etc. Next step is to see an MPN specialist. Then
Just came from the doctor. Still no definite result after my BMB. Tests are still incomplete. Some info: Positive for Jak2 , myeloproliferative neoplasms (MPN) Negative for leukemia and lymphoma Ultrasound came back good, no enlarged spleen, organs, etc. Next step is to see an MPN specialist. Then
margaritampn
in
MPN Voice
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
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
Monocytes and PVC
Am I moving on to
Leukaemia
? See haemo in February, but could ask for earlier if necessary. Much itching!
Am I moving on to
Leukaemia
? See haemo in February, but could ask for earlier if necessary. Much itching!
lucieboo
in
MPN Voice
4 years ago
Phylogenetic reconstruction of myeloproliferative neoplasm reveals very early origins and lifelong evolution
« The mean latency between JAK2V617F acquisition and clinical presentation was 31 years (range 12-54 years). Rates of clonal expansion varied substantially (<10% to >200% expansion/year), were affected by additional driver mutations, and predicted latency to clinical presentation. Driver mutations and
« The mean latency between JAK2V617F acquisition and clinical presentation was 31 years (range 12-54 years). Rates of clonal expansion varied substantially (<10% to >200% expansion/year), were affected by additional driver mutations, and predicted latency to clinical presentation. Driver mutations and
Manouche
in
MPN Voice
4 years ago
Are you getting the best from your telephone consultation? Top tips that can make a difference
You may find this blog
Leukaemia
Care have together helpful, it looks at different aspects of the telephone consultation call and offers a few tips, many recommended by other patients, to help you prepare. https://www.leukaemiacare.org.uk/support-and-information/latest-from-
leukaemia
-care/blog/tips-for-telephone-consultations
You may find this blog
Leukaemia
Care have together helpful, it looks at different aspects of the telephone consultation call and offers a few tips, many recommended by other patients, to help you prepare. https://www.leukaemiacare.org.uk/support-and-information/latest-from-
leukaemia
-care/blog/tips-for-telephone-consultations
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Welcome advice on healing AML
I am a 76 year old woman from Melbourne Australia and I have just been diagnosed with Acute Myeloid Leukemia.
I am a 76 year old woman from Melbourne Australia and I have just been diagnosed with Acute Myeloid Leukemia.
Mtd1944
in
Leukaemia 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
Starting CyberKnife treatment
Hello warriors! Had my second needle biopsy on 10/30. The first one 3 mo ago was inconclusive, suspicious. The path report came in on 11/03 as an adenocarcinoma. I also had a fiducial marker implanted at the time of the biopsy and on 11/9, I go to a diagnostic center that has the software protocol
Hello warriors! Had my second needle biopsy on 10/30. The first one 3 mo ago was inconclusive, suspicious. The path report came in on 11/03 as an adenocarcinoma. I also had a fiducial marker implanted at the time of the biopsy and on 11/9, I go to a diagnostic center that has the software protocol
dunnellon
in
Lung Conditions Community Forum
4 years ago
Ruxolitinib
Hi Folks I am about to start on Ruxolitinib does anyone have any advice for me please.I am already on Hydroxycarbamide and aspirin. Thanks
Hi Folks I am about to start on Ruxolitinib does anyone have any advice for me please.I am already on Hydroxycarbamide and aspirin. Thanks
Big-Ted
in
MPN Voice
4 years ago
Hand Sanitizers and Disinfectants
Hello, I am wondering if anyone has any knowledge or opinion on the use of hand sanitizers or disinfectants by mpn'ers during this time of Covid. I have read in the past that chemicals, (especially benzene, not in either) have been implicated in causing diseases and/or gene mutations. I am constantly
Hello, I am wondering if anyone has any knowledge or opinion on the use of hand sanitizers or disinfectants by mpn'ers during this time of Covid. I have read in the past that chemicals, (especially benzene, not in either) have been implicated in causing diseases and/or gene mutations. I am constantly
Meatloaf9
in
MPN Voice
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
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