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Richter’s Transformation - updated
Hi everyone. I would like to update all the data that we all provide and summarize it. Last week I had a meeting with a CLL teacher and we discussed Ricther's behavior. That is what my doctor thinks but I am not satisfied. It is only his hypothesis and without any study. He thinks that as long as
Hi everyone. I would like to update all the data that we all provide and summarize it. Last week I had a meeting with a CLL teacher and we discussed Ricther's behavior. That is what my doctor thinks but I am not satisfied. It is only his hypothesis and without any study. He thinks that as long as
Priss69
in
CLL Support
3 years ago
Different IGHV mutation tests?
Are there different tests for IGHV mutation? PCR? Sanger? NGS? My PCR test report says no mutations detected. Should I retest with other methods? Also, is IGHV mutation status innate or developed during the lifetime? If it’s innate and genetic, since I’m unmutated, should I get my children tested for
Are there different tests for IGHV mutation? PCR? Sanger? NGS? My PCR test report says no mutations detected. Should I retest with other methods? Also, is IGHV mutation status innate or developed during the lifetime? If it’s innate and genetic, since I’m unmutated, should I get my children tested for
nuji
in
CLL Support
3 years ago
Any Knowledge of CLL in the eyes?
A biopsy confirmed a diagnosis of CLL in both lower eyelids. This is a rare event. Neither my hematologist-oncologist or CLL Specialist have ever had a patient with it. They tell me that acalabrutinib, which I'll start next week, is sufficient treatment. From what I've read, I'm still uncomfortable
A biopsy confirmed a diagnosis of CLL in both lower eyelids. This is a rare event. Neither my hematologist-oncologist or CLL Specialist have ever had a patient with it. They tell me that acalabrutinib, which I'll start next week, is sufficient treatment. From what I've read, I'm still uncomfortable
cll2013
in
CLL Support
3 years ago
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Side Effects of Bendamustine?
I am asking for a friend who has follicular lymphoma and has been W&W for nine years. They start Rituxan and Bendamustine next week. With all the treatment I have had, I have never had this one, so I am wondering if you could share what your experiences were. Thanks much.
I am asking for a friend who has follicular lymphoma and has been W&W for nine years. They start Rituxan and Bendamustine next week. With all the treatment I have had, I have never had this one, so I am wondering if you could share what your experiences were. Thanks much.
KevinCLLITP
in
CLL Support
3 years ago
immunohistochemistry need help understanding
I am seeing my doctor on Tuesday but was able to get some results online from my bone marrow biopsy - Additional tests ordered: Cytogenetics and FISH (CLL panel) Can someone help me understand the findings below - thank you Marker Result Description CD20 Positive Pan B Cell Antigen (L26) CD3 T-cells
I am seeing my doctor on Tuesday but was able to get some results online from my bone marrow biopsy - Additional tests ordered: Cytogenetics and FISH (CLL panel) Can someone help me understand the findings below - thank you Marker Result Description CD20 Positive Pan B Cell Antigen (L26) CD3 T-cells
kp58ny
in
CLL Support
3 years ago
Cost for treatment
Hi everyone, i am hoping you can help. My dad was diagnosed with CLL about a month ago. He just received his information package in the mail from the specialist which indicated that he requires insurance to cover any medical expenses. We are from Ontario Canada so wondering what the cost is for the
Hi everyone, i am hoping you can help. My dad was diagnosed with CLL about a month ago. He just received his information package in the mail from the specialist which indicated that he requires insurance to cover any medical expenses. We are from Ontario Canada so wondering what the cost is for the
Rubymom
in
CLL Support
3 years ago
Just joined
Hi, I am about to start treatment with acalabrutinib for my cll, I was originally told I would be treated with venetoclax and Obinutuzumab but I also receive treatment for my bladder cancer so my consultant said I wouldn’t be able to receive the v+o while also receiving the BCG for bladder cancer. I
Hi, I am about to start treatment with acalabrutinib for my cll, I was originally told I would be treated with venetoclax and Obinutuzumab but I also receive treatment for my bladder cancer so my consultant said I wouldn’t be able to receive the v+o while also receiving the BCG for bladder cancer. I
Mtk1
in
CLL Support
3 years ago
World CLL Day
Good morning, 1st September, where is the year going. Getting used to it being dull now, longing for some sun. Blood tests this morning and then possibly a journalist in conjunction with Leukaemia Care calling to do an interview for Spot Leukaemia Early campaign month. Have already made a video which
Good morning, 1st September, where is the year going. Getting used to it being dull now, longing for some sun. Blood tests this morning and then possibly a journalist in conjunction with Leukaemia Care calling to do an interview for Spot Leukaemia Early campaign month. Have already made a video which
kitchengardener2
in
CLL Support
3 years ago
Red painful Feet
I have been on WOW for 6 years now with blood results relatively OK. However for last 2 years I have painful feet, soles and side and base of toe. Feet do not like heat. Cycles of socks on; to heat feet and socks off: to stop pain and red/purple colour. GP suggested fungus or venous leaking or dermititis
I have been on WOW for 6 years now with blood results relatively OK. However for last 2 years I have painful feet, soles and side and base of toe. Feet do not like heat. Cycles of socks on; to heat feet and socks off: to stop pain and red/purple colour. GP suggested fungus or venous leaking or dermititis
Marchmouse
in
CLL Support
3 years ago
Frontline treatment of Chronic Lymphocytic Leukemia (CLL/SLL) in 2021
JCO Oncology Practice has recently published two important papers: a clinical review article by Elizabeth A Brem MD and Susan O'Brien MD and a commentary by Nitin Jain MD which outline the current frontline therapies for CLL. Nitin Jain's excellent summary, titled '
[i]Evolving Treatment Paradigm
JCO Oncology Practice has recently published two important papers: a clinical review article by Elizabeth A Brem MD and Susan O'Brien MD and a commentary by Nitin Jain MD which outline the current frontline therapies for CLL. Nitin Jain's excellent summary, titled '
[i]Evolving Treatment Paradigm
CLLerinOz
Administrator
in
CLL Support
3 years ago
Leukemia and Lymphoma Society 3 D models help improve our understanding of Chronic Lymphocytic Leukemia (CLL/SLL)
The Leukemia and Lymphoma Society of the USA https://www.lls.org (well worth joining - it's free) has recently released 3D/animated models to help us better visualise how blood cancers impact on our health. The following links are to annotated models of specific interest to those of us with CLL/SLL
The Leukemia and Lymphoma Society of the USA https://www.lls.org (well worth joining - it's free) has recently released 3D/animated models to help us better visualise how blood cancers impact on our health. The following links are to annotated models of specific interest to those of us with CLL/SLL
AussieNeil
Partner
in
CLL Support
3 years ago
Where does CLL apoptosis take place?
After watching the video (Living With Chronic Lymphocytic Leukemia) I’m curious as to where the CLL cells death (apoptosis) takes place? In the blood? In the marrow? In the lymph nodes? In the spleen? All of the above? The part of the video (below*) is what got me thinking about this. “Dr. Vose: Bruton's
After watching the video (Living With Chronic Lymphocytic Leukemia) I’m curious as to where the CLL cells death (apoptosis) takes place? In the blood? In the marrow? In the lymph nodes? In the spleen? All of the above? The part of the video (below*) is what got me thinking about this. “Dr. Vose: Bruton's
Lavinia-Blue
in
CLL Support
3 years ago
HLH & CLL
Hi All, CLL diagnosed in 2014 and HLH on top of that in 2018. HLH makes CLL look like a cold it's nasty and I thank God for every day that I'm still here and as of yet not needed a transplant. I'm now 43 years of age. Is anyone out there in the same boat? Have a great weekend all! 😊
Hi All, CLL diagnosed in 2014 and HLH on top of that in 2018. HLH makes CLL look like a cold it's nasty and I thank God for every day that I'm still here and as of yet not needed a transplant. I'm now 43 years of age. Is anyone out there in the same boat? Have a great weekend all! 😊
Shirty78
in
CLL Support
3 years ago
New Diagnosis - Everything Normal except cytology
Just diagnosed this month, age 49. My lymphocytes are elevated and my cytology shows “atypical” CLL. All my other labs were good and I am mutated with normal FISH results. My doc says this is all good but I feel like I’m waiting for the other shoe to drop. Like someone is going to come to me and say,
Just diagnosed this month, age 49. My lymphocytes are elevated and my cytology shows “atypical” CLL. All my other labs were good and I am mutated with normal FISH results. My doc says this is all good but I feel like I’m waiting for the other shoe to drop. Like someone is going to come to me and say,
Keggs2020
in
CLL Support
3 years ago
Pfizer buys a company
They bought Trillium. I mention this because this company has a few blood cancer treatments in its pipeline including one that targets TP-53 mutation but for AML and NOT CLL, at least not yet. Still, with their expertise in the realm of treatments for blood cancers and now with the added resources of
They bought Trillium. I mention this because this company has a few blood cancer treatments in its pipeline including one that targets TP-53 mutation but for AML and NOT CLL, at least not yet. Still, with their expertise in the realm of treatments for blood cancers and now with the added resources of
Luap001
in
CLL Support
3 years ago
CAR-T post 9 months
Hi all Just the latest update on me - I’m still MRD negative 9 months after my CAR-T for aggressive CLL at the Peter Mac in Melbourne. Sadly the trial has now closed its CLL arm so only 9 of us in the world got this treatment for CLL. Here’s a more detailed update shared with the Leukaemia Foundation
Hi all Just the latest update on me - I’m still MRD negative 9 months after my CAR-T for aggressive CLL at the Peter Mac in Melbourne. Sadly the trial has now closed its CLL arm so only 9 of us in the world got this treatment for CLL. Here’s a more detailed update shared with the Leukaemia Foundation
Debinoz
in
CLL Support
3 years ago
How Good is the Level of Scientific Evidence Underlying the National Comprehensive Cancer Network Clinical Practice (NCCN) CLL Guidelines?
Our community support team take pride in maintaining reliable content in this community. When your life depends on it, you need confidence that what you are reading will give you the information you need. That way you can intelligently question your medical support team for reassurance that they are
Our community support team take pride in maintaining reliable content in this community. When your life depends on it, you need confidence that what you are reading will give you the information you need. That way you can intelligently question your medical support team for reassurance that they are
AussieNeil
Partner
in
CLL Support
3 years ago
CLL Diet
My Oncologist told me diet has no effect on CLL. Does anyone have input as to a good diet while undergoing treatment now that it is soon to start for me? Even though we need Lipids, cutting back on them may help. Anybody heard that too? I gained too much weight during 2020 pandemic, and feel that will
My Oncologist told me diet has no effect on CLL. Does anyone have input as to a good diet while undergoing treatment now that it is soon to start for me? Even though we need Lipids, cutting back on them may help. Anybody heard that too? I gained too much weight during 2020 pandemic, and feel that will
Hugo51
in
CLL Support
3 years ago
Skin barnacles ??
CLL and Bladder cancer , past used Ibrutinib, Acalabrutinib and Gyzava … all worked in controlling CLL … BCG infusions for Bladder cancer working , I think…. I have developed what Dermatologist calls .. skin barnacles … she says it from past sun exposure… Anyone have this problem ?? I suspect it
CLL and Bladder cancer , past used Ibrutinib, Acalabrutinib and Gyzava … all worked in controlling CLL … BCG infusions for Bladder cancer working , I think…. I have developed what Dermatologist calls .. skin barnacles … she says it from past sun exposure… Anyone have this problem ?? I suspect it
fish61
in
CLL Support
3 years ago
Covid -19, still a big risk for some.
Some time ago, I wanted to post up a warning about the various covid vaccines, and of the lack of protection they might offer for some. Back in April, (not long after I had my first covid-19 vaccine), news began to filter through on the “Royal Free Hospital London, Liver Transplant Support Group” Facebook
Some time ago, I wanted to post up a warning about the various covid vaccines, and of the lack of protection they might offer for some. Back in April, (not long after I had my first covid-19 vaccine), news began to filter through on the “Royal Free Hospital London, Liver Transplant Support Group” Facebook
Richard-Allen
in
British Liver Trust
3 years ago
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