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Re-inoculate?
Hello you wonderful and oh-so-knowledgeable folks! This is a good-news story. After 11 months on a zanu-obin-venetoclax trial I've been in remission for 3 years. AND a lymphocyte subset test suggests that my B cells are coming back! Now here's my question: while I was on treatment and in the past
Hello you wonderful and oh-so-knowledgeable folks! This is a good-news story. After 11 months on a zanu-obin-venetoclax trial I've been in remission for 3 years. AND a lymphocyte subset test suggests that my B cells are coming back! Now here's my question: while I was on treatment and in the past
mouseandchair
in
CLL Support
8 days ago
CLL/CML treatment update
Hi All, Thank you for your passed and continuing help and support. Been taking dasatsnib since 2018 or 2019; with 1 incidence of Pleural effusion/thoracenticis, etc., in 2021. —that’s when I switched to Dr Cortes. zwent from 100mg to 20. For last 2-3 years. Dx’d in 2014. I have CLL and CML simultaneously
Hi All, Thank you for your passed and continuing help and support. Been taking dasatsnib since 2018 or 2019; with 1 incidence of Pleural effusion/thoracenticis, etc., in 2021. —that’s when I switched to Dr Cortes. zwent from 100mg to 20. For last 2-3 years. Dx’d in 2014. I have CLL and CML simultaneously
tedrog
in
CLL Support
8 days ago
Importance of CLL Specialist
This excellent study was just published. Why should you get a CLL specialist? My community oncologist gave me a fish and a flow test and told me that I wouldn’t need treatment for 3-5 years. He didn’t test for IGVH and didn’t know that there is a specific TP53 test. My CLL specialist tested for 500 mutations
This excellent study was just published. Why should you get a CLL specialist? My community oncologist gave me a fish and a flow test and told me that I wouldn’t need treatment for 3-5 years. He didn’t test for IGVH and didn’t know that there is a specific TP53 test. My CLL specialist tested for 500 mutations
PennyLane2024
in
CLL Support
11 days ago
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Complete Remission
My Complete Blood Count (CBC) results state the normal range for Lymphocytes is 850-3900 cells/uL. The NCCN CLL guidelines for Complete Remission (CR) states Lymphocytes must be less than 5000 cells/uL. Why is 5000 cells/uL an acceptable NCCN CLL CR level for Lymphocytes when the maximum for the Complete
My Complete Blood Count (CBC) results state the normal range for Lymphocytes is 850-3900 cells/uL. The NCCN CLL guidelines for Complete Remission (CR) states Lymphocytes must be less than 5000 cells/uL. Why is 5000 cells/uL an acceptable NCCN CLL CR level for Lymphocytes when the maximum for the Complete
leftysfsl1945
in
CLL Support
12 days ago
Just 5% of therapies tested in animals end up as as human drugs, new study shows. CLL research has particular challenges due to the TME
There's a long and challenging journey from microscope observations of cancer cells hopefully dying while exposed to candidate therapies, that is, 'in vitro' testing, to successful in vivo human studies, clinical trials and eventual approval. Not only does the therapy need to kill the cancer cells with
There's a long and challenging journey from microscope observations of cancer cells hopefully dying while exposed to candidate therapies, that is, 'in vitro' testing, to successful in vivo human studies, clinical trials and eventual approval. Not only does the therapy need to kill the cancer cells with
AussieNeil
Partner
in
CLL Support
14 days ago
Leukemia-associated macrophages, their role in the CLL Tumor Micro-environment and how they affect progression and therapy response
Understanding how the CLL Tumor Micro-environment (TME) functions is crucial to improving CLL therapy. CLL cells are not as robust as healthy B cells and they rely on their created TME in the nodes and bone marrow for their survival. That's why it's so easy to kill CLL cells with in vitro testing - checking
Understanding how the CLL Tumor Micro-environment (TME) functions is crucial to improving CLL therapy. CLL cells are not as robust as healthy B cells and they rely on their created TME in the nodes and bone marrow for their survival. That's why it's so easy to kill CLL cells with in vitro testing - checking
AussieNeil
Partner
in
CLL Support
21 days ago
lymphocytic leucocytosis
I have CLL diagnosed a year ago, just had my bloods done last week, the results have come back with lymphocytic leucocytosis does anyone know if this is a bad thing not heard if this before. Donnax
I have CLL diagnosed a year ago, just had my bloods done last week, the results have come back with lymphocytic leucocytosis does anyone know if this is a bad thing not heard if this before. Donnax
PusscatsGoodies
in
CLL Support
27 days ago
New DX
I am a 76 yo woman. I was DX in 2016 and was in a trial at MD Anderson from 2017-2019. I achieved UMRD at the end of the trial of Ibrutinib and Venetoclax. I remained in total remission until my first visit after my husband died from Alzheimer’s in Oct 2021. Since then it’s been downhill. Dr Wierda
I am a 76 yo woman. I was DX in 2016 and was in a trial at MD Anderson from 2017-2019. I achieved UMRD at the end of the trial of Ibrutinib and Venetoclax. I remained in total remission until my first visit after my husband died from Alzheimer’s in Oct 2021. Since then it’s been downhill. Dr Wierda
pkpayne
in
CLL Support
2 months ago
A recent consultation with a CLL specialist, and confirmation of genetic markers
My wife had an appointment with CLL specialist Dr. C. Chen yesterday. We also performed other blood tests. I had a pleasant consultation with Dr. Chen. I was perplexed because of the TP53 mutation, whether it was discovered or not. I posted an earlier post that she has a TP53 mutation. I am sorry for
My wife had an appointment with CLL specialist Dr. C. Chen yesterday. We also performed other blood tests. I had a pleasant consultation with Dr. Chen. I was perplexed because of the TP53 mutation, whether it was discovered or not. I posted an earlier post that she has a TP53 mutation. I am sorry for
Sagarcanada
in
CLL Support
2 months ago
Xpo1 significance
Not been active for a while as my wife is on watch and wait since initially being diagnosed two years ago at 41.Eric blood panels have come back with Xpo1 mutation which we are told significantly increases the chances of needing treatment. Going through the details we got but there seems to be a trial
Not been active for a while as my wife is on watch and wait since initially being diagnosed two years ago at 41.Eric blood panels have come back with Xpo1 mutation which we are told significantly increases the chances of needing treatment. Going through the details we got but there seems to be a trial
NewCll
in
CLL Support
2 months ago
Sectioning experience so far.
I was sectioned last Sunday under the mental health act section 2. Three medical people came to the house and with my wife we answered a lot of questions. The medics all agreed and a red form was filled in. It was all explained and I was very anxious. It was two days later when I went into the hospital
I was sectioned last Sunday under the mental health act section 2. Three medical people came to the house and with my wife we answered a lot of questions. The medics all agreed and a red form was filled in. It was all explained and I was very anxious. It was two days later when I went into the hospital
Wheelchairdave
in
Headway
8 months ago
a diagnosis at last
saw consultant yesterday I have almost completed diagnosis few more tests to come . it would seem that my CLL has mutated into a quite a rare lymphoma I don’t think I have it quite right but it’s called ana plastic lymphoma ( apparently a rare form that mutates from CLL ) I will have six courses
saw consultant yesterday I have almost completed diagnosis few more tests to come . it would seem that my CLL has mutated into a quite a rare lymphoma I don’t think I have it quite right but it’s called ana plastic lymphoma ( apparently a rare form that mutates from CLL ) I will have six courses
Hilo13
in
CLL Support
2 months ago
Introduction
Hi I decided to join after my wife recommended this truly excellent resource and community. I have recently been diagnosed with CLL and are finding this place a goldmine of advice and support. Not really looking forward to reading more about the condition but need to understand what’s going
Hi I decided to join after my wife recommended this truly excellent resource and community. I have recently been diagnosed with CLL and are finding this place a goldmine of advice and support. Not really looking forward to reading more about the condition but need to understand what’s going
bodgit
in
CLL Support
2 months ago
Introduction
Hi I decided to join after my wife recommended this truly excellent resource and community. I have recently been diagnosed with CLL and are finding this place a goldmine of advice and support. Not really looking forward to reading more about the condition but need to understand what’s going on with
Hi I decided to join after my wife recommended this truly excellent resource and community. I have recently been diagnosed with CLL and are finding this place a goldmine of advice and support. Not really looking forward to reading more about the condition but need to understand what’s going on with
Artycrafter
in
CLL Support
2 months ago
Is it the time for initial treatment?
As I previously stated, my wife was diagnosed with CLL in 2020. Her markers are 13q deletion, 12 trisomy, and TP53, with IGHV muted. She is still in W&W form. So far, I've learned via reading literature and numerous posts about lymphocyte doubling time, lactate dehydrogenase, and lymph nodes. Her lymphocyte
As I previously stated, my wife was diagnosed with CLL in 2020. Her markers are 13q deletion, 12 trisomy, and TP53, with IGHV muted. She is still in W&W form. So far, I've learned via reading literature and numerous posts about lymphocyte doubling time, lactate dehydrogenase, and lymph nodes. Her lymphocyte
Sagarcanada
in
CLL Support
2 months ago
Stomach heavy is due to a swollen spleen?
My wife has had CLL since 2020 and is still in the W&W stage. For the past few months, she has complained that her stomach is becoming heavy, implying that it is full of food. I take care of my wife. I seek additional posts. I don't find much of it. I suppose that could be related to a swollen spleen
My wife has had CLL since 2020 and is still in the W&W stage. For the past few months, she has complained that her stomach is becoming heavy, implying that it is full of food. I take care of my wife. I seek additional posts. I don't find much of it. I suppose that could be related to a swollen spleen
Sagarcanada
in
CLL Support
2 months ago
Great news from my MDAnderson doctor
I was originally diagnosed in May, 2011 and had a long 9 year watch and wait. Feb,2020 Dr Thompson put me on Calquence as I was become a little anemic and this treatment gave me great results. Feb, 2022 Dr. T and I agreed to add Venetoclax in an attempt to try to reach uMRD and have a drug
I was originally diagnosed in May, 2011 and had a long 9 year watch and wait. Feb,2020 Dr Thompson put me on Calquence as I was become a little anemic and this treatment gave me great results. Feb, 2022 Dr. T and I agreed to add Venetoclax in an attempt to try to reach uMRD and have a drug
DGG1931
in
CLL Support
2 months ago
Bendamustine
Hi Male from 1946. Diagnosed for CLL in 1995. 2013 : Leukeran + Rituximab In 2021 I received only 1 cycle of Bendamustine (90) + Rituximab. No further cycles because of hemolyse. 2024 Now possibly Venetoclax + ? Appointment with oncologist next friday. Not much of a help. Best regards,
Hi Male from 1946. Diagnosed for CLL in 1995. 2013 : Leukeran + Rituximab In 2021 I received only 1 cycle of Bendamustine (90) + Rituximab. No further cycles because of hemolyse. 2024 Now possibly Venetoclax + ? Appointment with oncologist next friday. Not much of a help. Best regards,
dickcll
in
CLL Support
2 months ago
Acalabrutinib, venetoclax and obinutuzumab in relapsed CLL: Phase 2 CLL2-BAAG trial results from the German CLL Study Group
Some very encouraging news for those with unmutated IGHV and/or TP53 aberrations, who are wondering how they will fare with a subsequent treatment. This phase 2 trial of 44 relapsed patients included 34 (75.6%) who had unmutated IGHV and 14/44 (31.8%) who had TP53 aberrations. A Measurable Residual
Some very encouraging news for those with unmutated IGHV and/or TP53 aberrations, who are wondering how they will fare with a subsequent treatment. This phase 2 trial of 44 relapsed patients included 34 (75.6%) who had unmutated IGHV and 14/44 (31.8%) who had TP53 aberrations. A Measurable Residual
AussieNeil
Partner
in
CLL Support
2 months ago
Visual migraines 8 months after ablation.
Hi,I am a 47yr woman and had an ablation for a heavy burden of ectopics (30%) back in February. It was quite complicated apparently and took 4 hrs and took me quite a while to recover. Anyway the week following the ablation I had frequent visual migraines which I was told were due to the transeptal puncture
Hi,I am a 47yr woman and had an ablation for a heavy burden of ectopics (30%) back in February. It was quite complicated apparently and took 4 hrs and took me quite a while to recover. Anyway the week following the ablation I had frequent visual migraines which I was told were due to the transeptal puncture
ROO76
in
AF Association
9 months ago
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