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p17 deletion. Can anyone advise or cheer me up?!
I’m 79, living in UK and 18 months into being diagnosed with
Chronic
lymphocytic
leukaemia
(CLL) and suspected
Chronic
myelomonocytic
leukaemia
(CMML), I have been still at early stage and not needing treatment.
I’m 79, living in UK and 18 months into being diagnosed with
Chronic
lymphocytic
leukaemia
(CLL) and suspected
Chronic
myelomonocytic
leukaemia
(CMML), I have been still at early stage and not needing treatment.
Fogey
in
CLL Support
11 months 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
[/i] [i]https://theconversation.com/just-5-of-therapies-tested-in-animals-end-up-as-as-human-drugs-new-study-shows-231920[/i] We think of CLL as a
leukaemia
, but CLL/SLL (
Chronic
Lymphocytic [u]Leukemia[/u], Small Lymphocytic [u]Lymphoma[/u]), is the most commonly diagnosed adult Non-Hodgins [u]Lymphoma
[/i] [i]https://theconversation.com/just-5-of-therapies-tested-in-animals-end-up-as-as-human-drugs-new-study-shows-231920[/i] We think of CLL as a
leukaemia
, but CLL/SLL (
Chronic
Lymphocytic [u]Leukemia[/u], Small Lymphocytic [u]Lymphoma[/u]), is the most commonly diagnosed adult Non-Hodgins [u]Lymphoma
AussieNeil
Partner
in
CLL Support
2 months ago
Richter's and Novel Treatments/Combinations
We've had a few members post about Richter's recently so I thought it might be time for a bit of an update on new treatments. In these reports there is not a lot of information about clonality and which mutations the patients have. Extensive pretesting for these variables as well as the clinical ones
We've had a few members post about Richter's recently so I thought it might be time for a bit of an update on new treatments. In these reports there is not a lot of information about clonality and which mutations the patients have. Extensive pretesting for these variables as well as the clinical ones
Jm954
Administrator
in
CLL Support
4 days ago
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NO CD20? How concerned to be?
Hi all! Went in with a recently diagnosed loved one to an oncology appointment recently. I don’t have FISH back yet, but I found out (at least preliminary) flow showed CD20 negative. Doctor Google sent me into a panic stating this was very not great news for NH lymphoma patients. But then it also said
Hi all! Went in with a recently diagnosed loved one to an oncology appointment recently. I don’t have FISH back yet, but I found out (at least preliminary) flow showed CD20 negative. Doctor Google sent me into a panic stating this was very not great news for NH lymphoma patients. But then it also said
anongirll1927
in
CLL Support
21 days ago
Following LeoPa's “On CLL, diet and possible connections.”
I am also curious about the preferred energy source of CLL cells. Particularly the cholesterol role. If the CLL cells use cholesterol do they use whatever is present, or is there a signaling going on telling/initiating production—that causes cholesterol to rise? Below are a few articles I found on
I am also curious about the preferred energy source of CLL cells. Particularly the cholesterol role. If the CLL cells use cholesterol do they use whatever is present, or is there a signaling going on telling/initiating production—that causes cholesterol to rise? Below are a few articles I found on
Lavinia-Blue
in
CLL Support
22 days ago
Hot Sauna for CLL Patients
I am diagnosed with CLL since 2021 and curregtiy on W&W with relatively stable WBC. I have hot sauna in my building gym. Is it beneficial for me to do hot sauna once a week or can sauna trigger CLL to activate into a fast progression? Thank you
I am diagnosed with CLL since 2021 and curregtiy on W&W with relatively stable WBC. I have hot sauna in my building gym. Is it beneficial for me to do hot sauna once a week or can sauna trigger CLL to activate into a fast progression? Thank you
Lovely67
in
CLL Support
1 month ago
Allograft
Just wanted to know if anyone knew anything about Allograft. My husband has just finished 2 yrs on ventaclax, all blood's good, and we expected to just go away and go back for blood's until maybe time for a different treatment, but was told they would like us to have a chat to a specialist about allograft
Just wanted to know if anyone knew anything about Allograft. My husband has just finished 2 yrs on ventaclax, all blood's good, and we expected to just go away and go back for blood's until maybe time for a different treatment, but was told they would like us to have a chat to a specialist about allograft
sue6741
in
CLL Support
1 month ago
Median PFS for FCR treated CLL patients with IGHV-M was 14.6 years vs 4.2 years for patients with IGHV-UM. V+O and I+R look to be superior
An update of the long-term follow-up results from the original 300-patient FCR (fludarabine, cyclophosphamide, and rituximab) study initiated at MD Anderson in 1999,
Sustained remissions in CLL after frontline FCR treatment with very-long-term follow-up,
reports ~47% of patients with mutated IGHV
An update of the long-term follow-up results from the original 300-patient FCR (fludarabine, cyclophosphamide, and rituximab) study initiated at MD Anderson in 1999,
Sustained remissions in CLL after frontline FCR treatment with very-long-term follow-up,
reports ~47% of patients with mutated IGHV
AussieNeil
Partner
in
CLL Support
1 month ago
Not officially diagnosed...in watch and wait
As the title says, I'm in the WW stage. I saw a hematologist 5 years ago about my lymphocytosis and he felt he could not give a definitive diagnosis. In March this year, I had some stomach issues and bloodwork (above). A peripheral blood smear was done. Below are the notes: There is mild leukocytosis
As the title says, I'm in the WW stage. I saw a hematologist 5 years ago about my lymphocytosis and he felt he could not give a definitive diagnosis. In March this year, I had some stomach issues and bloodwork (above). A peripheral blood smear was done. Below are the notes: There is mild leukocytosis
Purplecat1919
in
CLL Support
2 months ago
root canals
hi all , I have been on the W and W program. My blood dis-order was discovered in 2019. I referred to it as a blood disorder as they still haven’t taken a bone marrow sample to confirm that it’s truly CLL. I am curious if anyone in the group has tried removing any old root canals to see if it
hi all , I have been on the W and W program. My blood dis-order was discovered in 2019. I referred to it as a blood disorder as they still haven’t taken a bone marrow sample to confirm that it’s truly CLL. I am curious if anyone in the group has tried removing any old root canals to see if it
Jrugg
in
CLL Support
2 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 months 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
2 months 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
2 months 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
2 months 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
2 months ago
Chronic Myelomonocytic Leukaemia (CMML)
Recent posts regarding MGUS and Smouldering Myloma have prompted me to share my recent diagnosis. I have had PMR for 3.5 years and following a few ups and downs of Pred dose, I have successfully tapered from 8Mg to 5mg over the past 12 months. I consulted a Rheumy privately (in Oxford) 12 months ago
Recent posts regarding MGUS and Smouldering Myloma have prompted me to share my recent diagnosis. I have had PMR for 3.5 years and following a few ups and downs of Pred dose, I have successfully tapered from 8Mg to 5mg over the past 12 months. I consulted a Rheumy privately (in Oxford) 12 months ago
AyJayBass
in
PMRGCAuk
1 month 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
3 months 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
3 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
3 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
3 months ago
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