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Mutation Levels
I have seen other discussions re bad mutations , on my regular letter to my doctor from my haematologist it states : Chronic Lymphocytic Leukemia associated with high risk variants including loss of the LEU and ATM genes. As per my normal blood results, do these have a high and low level and if so
I have seen other discussions re bad mutations , on my regular letter to my doctor from my haematologist it states : Chronic Lymphocytic Leukemia associated with high risk variants including loss of the LEU and ATM genes. As per my normal blood results, do these have a high and low level and if so
uide3095
in
CLL Support
1 year ago
Drs. Susan O'Brien and Catherine Wu Presented the Binet-Rai Medal at 20th International Workshop on Chronic Lymphocytic Leukemia
Two doctors who have spent many many hours helping the CLL community.
I FEEL SURE THAT WE ALL EXPRESS OUR MANY THANKS.
THIS IS AN AWARD THAT IS WELL DESERVED.
During this past weekend's 20th biennial International Workshop on Chronic Lymphocytic Leukemia (iwCLL), Susan M
Two doctors who have spent many many hours helping the CLL community.
I FEEL SURE THAT WE ALL EXPRESS OUR MANY THANKS.
THIS IS AN AWARD THAT IS WELL DESERVED.
During this past weekend's 20th biennial International Workshop on Chronic Lymphocytic Leukemia (iwCLL), Susan M
Kwenda
in
CLL Support
1 year ago
Anyone had a coronary sinus reducer?
Basically my bone marrow transplant and other treatment for
leukaemia
has likely caused my heart disease. Since 2019 I have had 5 angiograms and 3 angioplasties. I'm urgently awaiting another one of each.
Basically my bone marrow transplant and other treatment for
leukaemia
has likely caused my heart disease. Since 2019 I have had 5 angiograms and 3 angioplasties. I'm urgently awaiting another one of each.
SomersetJo
in
British Heart Foundation
1 year ago
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Spotlight on Chronic Lymphocytic Leukemia (CLL) May 24, 2023 Nicole Lamanna, MD- replay, slides and transcript
Spotlight on Chronic Lymphocytic Leukemia (CLL) May 24, 2023 Nicole Lamanna, MD https://www.lls.org/patient-education-webcasts/spotlight-chronic-lymphocytic-leukemia-cll https://youtu.be/6KziJk3zQ_I Topics Covered: Emerging therapies and clinical trials for CLL Managing side effects Strategies
Spotlight on Chronic Lymphocytic Leukemia (CLL) May 24, 2023 Nicole Lamanna, MD https://www.lls.org/patient-education-webcasts/spotlight-chronic-lymphocytic-leukemia-cll https://youtu.be/6KziJk3zQ_I Topics Covered: Emerging therapies and clinical trials for CLL Managing side effects Strategies
lankisterguy
Volunteer
in
CLL Support
1 year ago
LET'S TALK CLL- Patients & Doctors Discuss the Latest Live! SATURDAY, OCTOBER 14, 2023 Virtual program starts at 10am CDT 11am EDT
LIVE & IN-PERSON EVENT- LET'S TALK CLL Patients & Doctors Discuss the Latest Live! DATE: SATURDAY, OCTOBER 14, 2023 LOCATION: MD ANDERSON CANCER CENTER Virtual program begins at 10am (CT). Register here: https://us06web.zoom.us/webinar/register/5216926341361/WN_8BHNtMXZR9Gjf211Nh_lhA - We're
LIVE & IN-PERSON EVENT- LET'S TALK CLL Patients & Doctors Discuss the Latest Live! DATE: SATURDAY, OCTOBER 14, 2023 LOCATION: MD ANDERSON CANCER CENTER Virtual program begins at 10am (CT). Register here: https://us06web.zoom.us/webinar/register/5216926341361/WN_8BHNtMXZR9Gjf211Nh_lhA - We're
lankisterguy
Volunteer
in
CLL Support
1 year ago
High Risk?
I’ve actually been feeling really well recently so the thought of
leukaemia
is quite a blow.
I’ve actually been feeling really well recently so the thought of
leukaemia
is quite a blow.
lizzziep
in
MPN Voice
1 year ago
A trial examining the effects of pausing BTKis to coincide with SARS-CoV-2 vaccination and its impact on immune responses in CLL patients
Trial registration number ISRCTN14197181 https://bmjopen.bmj.com/content/13/9/e077946 This study aims to determine in patients with chronic lymphocytic
leukaemia
(CLL) if a 3-week pause in Bruton tyrosine kinase inhibitor therapy (BTKi) starting 1 week before delivery of SARS-CoV-2 vaccine booster
Trial registration number ISRCTN14197181 https://bmjopen.bmj.com/content/13/9/e077946 This study aims to determine in patients with chronic lymphocytic
leukaemia
(CLL) if a 3-week pause in Bruton tyrosine kinase inhibitor therapy (BTKi) starting 1 week before delivery of SARS-CoV-2 vaccine booster
gardening-girl
in
CLL Support
1 year ago
Shingrix availability on PBS in Australia from 1 November has been confirmed
[u][i]SEE THIS REPLY [/i][/u][u]for the latest update to this post[/u]: https://healthunlocked.com/cllsupport/posts/150056558/shingrix-availability-on-pbs-in-australia-from-1-november-has-been-confirmed?responses=150067213 Earlier this year, I posted about a possible change to the PBS to make Shingrix
[u][i]SEE THIS REPLY [/i][/u][u]for the latest update to this post[/u]: https://healthunlocked.com/cllsupport/posts/150056558/shingrix-availability-on-pbs-in-australia-from-1-november-has-been-confirmed?responses=150067213 Earlier this year, I posted about a possible change to the PBS to make Shingrix
CLLerinOz
Administrator
in
CLL Support
1 year ago
Richters Transformation
I recently informed here that after nine therapy free years since 2014 (FCR) my CLL bounced back in 10/2022 with an DLBCL and a suspicion of Richters. Biopsy and Lab tests predicted that. Therefore I was immediately treated with R-CHOP 14 CI Therapy first in Hospital one week and then within the ambulance
I recently informed here that after nine therapy free years since 2014 (FCR) my CLL bounced back in 10/2022 with an DLBCL and a suspicion of Richters. Biopsy and Lab tests predicted that. Therefore I was immediately treated with R-CHOP 14 CI Therapy first in Hospital one week and then within the ambulance
seoul1949
in
CLL Support
1 year ago
Agios and Alnylam sign agreement for siRNA candidate
« We are pleased to license this programme from Alnylam, the leading RNAi therapeutics company, with the goal of delivering a convenient, disease-modifying treatment option that addresses the underlying pathophysiology of PV and reduces or eliminates the need for phlebotomy. “We look forward to initiating
« We are pleased to license this programme from Alnylam, the leading RNAi therapeutics company, with the goal of delivering a convenient, disease-modifying treatment option that addresses the underlying pathophysiology of PV and reduces or eliminates the need for phlebotomy. “We look forward to initiating
Manouche
in
MPN Voice
1 year ago
tasquinimod in myelofibrosis (MF)
»The data showed that treatment with this drug results in normal blood counts, reduction of fibrosis in the bone marrow and normalization of spleen size in this mouse model. That suggests that tasquinimod can act as a disease modifying agent in MF » « The now planned study will investigate tasquinimod
»The data showed that treatment with this drug results in normal blood counts, reduction of fibrosis in the bone marrow and normalization of spleen size in this mouse model. That suggests that tasquinimod can act as a disease modifying agent in MF » « The now planned study will investigate tasquinimod
Manouche
in
MPN Voice
1 year ago
Jakafi + Grapefruit
Just came across this warning on Drugs.com. I had never seen before. Have those of you on Jakafi (ruxolitinib) seen this warning?
ruxolitinib food Applies to: Jakafi (ruxolitinib)
Do not consume grapefruit or grapefruit juice during treatment with ruxolitinib unless directed otherwise by
Just came across this warning on Drugs.com. I had never seen before. Have those of you on Jakafi (ruxolitinib) seen this warning?
ruxolitinib food Applies to: Jakafi (ruxolitinib)
Do not consume grapefruit or grapefruit juice during treatment with ruxolitinib unless directed otherwise by
hunter5582
in
MPN Voice
1 year ago
flow cytometry is showing about 74% CLL involvement.
Is it likely that treatment might be needed in the near future? Husband is trisomy 12, TP53 negative. Mutated. He has splenomegaly, and enlarged nodes. Fish is in process. INTERPRETATION A phenotypically abnormal population with forward and right-angle scatter features of small lymphocytes constitutes
Is it likely that treatment might be needed in the near future? Husband is trisomy 12, TP53 negative. Mutated. He has splenomegaly, and enlarged nodes. Fish is in process. INTERPRETATION A phenotypically abnormal population with forward and right-angle scatter features of small lymphocytes constitutes
juniper1975
in
CLL Support
1 year ago
CLL and mRNA Vaccines
Just saw this abstract, which is one of the papers being presented at the Boston CLL conference: https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1004157 I don't understand most of it, but this is one of the "Findings": [i]CLL patients and other immunocompromised populations
Just saw this abstract, which is one of the papers being presented at the Boston CLL conference: https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1004157 I don't understand most of it, but this is one of the "Findings": [i]CLL patients and other immunocompromised populations
BWHR
in
CLL Support
1 year ago
SCT while feeling well
I have Post ET Myelofibrosis, MPL positive, I also have another mutation, which I’ve been told will increase my chances of getting
leukaemia
. I have pretty much decided I will go through with it, but know it will be very tough.
I have Post ET Myelofibrosis, MPL positive, I also have another mutation, which I’ve been told will increase my chances of getting
leukaemia
. I have pretty much decided I will go through with it, but know it will be very tough.
SRH55
in
MPN Voice
2 years ago
Stem cell transplant starts on Monday
My experience shows that for a few of us, even an abundance of treatments, can’t keep CLL at bay forever and it continues to be a life threatening
leukaemia
. Hardly a ‘good’ cancer ! 😕 Sending best wishes to you all Jackie
My experience shows that for a few of us, even an abundance of treatments, can’t keep CLL at bay forever and it continues to be a life threatening
leukaemia
. Hardly a ‘good’ cancer ! 😕 Sending best wishes to you all Jackie
Jm954
Administrator
in
CLL Support
1 year ago
Jak2/tet2 mutation
Hello this is Ben from VA! I was diagnosed with MPN last year and use Besremi every 2 weeks. I have jak2/tet2 mutations which makes me feel confused and scared since the majority of PVs only have jak2(or other so-called driver mutations). I read a lot online and it seems tet2 is not the worst thing
Hello this is Ben from VA! I was diagnosed with MPN last year and use Besremi every 2 weeks. I have jak2/tet2 mutations which makes me feel confused and scared since the majority of PVs only have jak2(or other so-called driver mutations). I read a lot online and it seems tet2 is not the worst thing
Ben2022
in
MPN Voice
1 year ago
Uveitus
I told him I have CLL and in the middle of having treatment but he didn’t seem to have herd of it which I wasn’t surprised but after looking it up it can be because of lymphoma or
Leukaemia
.
I told him I have CLL and in the middle of having treatment but he didn’t seem to have herd of it which I wasn’t surprised but after looking it up it can be because of lymphoma or
Leukaemia
.
mush56
in
CLL Support
1 year ago
Update.
Had my last infusion of Rituximab today. A doctor came to speak with me, apparently my cll is not responding to the infusions. They are hoping that this last dose will trigger a reaction but she is doubtful. She asked if I had ever taken acalabrutinib to which I said no and I think i have heard that
Had my last infusion of Rituximab today. A doctor came to speak with me, apparently my cll is not responding to the infusions. They are hoping that this last dose will trigger a reaction but she is doubtful. She asked if I had ever taken acalabrutinib to which I said no and I think i have heard that
Jacksc06
in
CLL Support
1 year ago
Lymphatic drainage massages
After reading CLL is dormant in the blood stream but active in the lymph nodes I wondered if it might be be beneficial to keep the cells circulating out of the lymph nodes as much as possible. It seems intuitive exercise and hydration would be good for this potentially but should have no real negative
After reading CLL is dormant in the blood stream but active in the lymph nodes I wondered if it might be be beneficial to keep the cells circulating out of the lymph nodes as much as possible. It seems intuitive exercise and hydration would be good for this potentially but should have no real negative
Rando21
in
CLL Support
1 year ago
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