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Moving toward disease modification in polycythemia vera
« In this article, we provide an overview of the current and evolving treatment landscape of PV and outline our vision for a patient-centered, phlebotomy-free, treatment approach using time-limited, disease-modifying treatment modalities early in the disease course, which could ultimately affect the
« In this article, we provide an overview of the current and evolving treatment landscape of PV and outline our vision for a patient-centered, phlebotomy-free, treatment approach using time-limited, disease-modifying treatment modalities early in the disease course, which could ultimately affect the
Manouche
in
MPN Voice
7 months ago
Puzzled
Hi folks! Hope we're all travelling well. Can I tap into your collective wisdom and experience? I've just come back from my regular check up with the CLL specialist. My ALC has gone from 29 to 53 in 6 months, or 91% of the blood count. Before then, it was steadily rising, but dropping at intervals. The
Hi folks! Hope we're all travelling well. Can I tap into your collective wisdom and experience? I've just come back from my regular check up with the CLL specialist. My ALC has gone from 29 to 53 in 6 months, or 91% of the blood count. Before then, it was steadily rising, but dropping at intervals. The
Guffy
in
CLL Support
2 days ago
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
6 days ago
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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
6 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
9 days ago
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
10 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
20 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
25 days ago
Modbury123
Hello this is the first time I have submitted a request maybe you can help me solve this please . I have ET plus JAK2 I take 500gm Hydroxycarbamide plus Aspirin. On my GP Patient Access under conditions Essential Thrombocythemia is shown I mentioned to the GP should it not also say + JAK2 .He came
Hello this is the first time I have submitted a request maybe you can help me solve this please . I have ET plus JAK2 I take 500gm Hydroxycarbamide plus Aspirin. On my GP Patient Access under conditions Essential Thrombocythemia is shown I mentioned to the GP should it not also say + JAK2 .He came
Modbury123
in
MPN Voice
7 months 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
1 month 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
1 month 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
Subsequent to previous posts
Went back to GP again today after previous visit about clubbed fingers and breathing trouble. Booked an urgent blood test and need to provide samples then I will get a scan to check for cancer. I don't know how I feel about this tbh, wanted him to tell me it was all in my head and for that to be true
Went back to GP again today after previous visit about clubbed fingers and breathing trouble. Booked an urgent blood test and need to provide samples then I will get a scan to check for cancer. I don't know how I feel about this tbh, wanted him to tell me it was all in my head and for that to be true
JHutton1994
in
Lung Conditions Community Forum
7 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
So this is what it is like to be really poorly
I got diagnosed with CLL in Dec (chronic
leukaemia
) which is early stage and treatable if and when needed. But because of this incidental diagnosis, my rheumatologist took me off my Humira until the haematologist said it was safe to continue. Which it is.
I got diagnosed with CLL in Dec (chronic
leukaemia
) which is early stage and treatable if and when needed. But because of this incidental diagnosis, my rheumatologist took me off my Humira until the haematologist said it was safe to continue. Which it is.
cornflake
in
NRAS
4 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
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