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Chronic leukaemia
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Should I be worried?
Hi All, my Haemo Lady, just called me with my Bone Marrow Biopsy results, She, said they were heavily infiltrated with CLL. A recent body scan also showed a large lump in my stomach, she is not sure if it is related to my CLL, or perhaps an aggressive lymphoma. She has ordered a needle biopsy of this
Hi All, my Haemo Lady, just called me with my Bone Marrow Biopsy results, She, said they were heavily infiltrated with CLL. A recent body scan also showed a large lump in my stomach, she is not sure if it is related to my CLL, or perhaps an aggressive lymphoma. She has ordered a needle biopsy of this
Vindicatrix
in
CLL Support
5 months ago
venetoclax and obinutuzumab treatment for cll
Hi, I have finished the above 12 months treatment for cll tp53 mutated, I now have 2 monthly checks and my lymphocytes are low, is this a cause for concern?
Hi, I have finished the above 12 months treatment for cll tp53 mutated, I now have 2 monthly checks and my lymphocytes are low, is this a cause for concern?
dellkota
in
CLL Support
5 months ago
First six-month blood test, and my lymphocytes have gone down!
I’m soon to be 55. I was diagnosed in the UK with MBL this summer. My lymphocytes were at six with over 50% of them monoclonal cells. I’ve just had my six-month check. I’ve come down to 4.8. I know that these numbers can move around quite a lot, but for now I’m really happy with the trend. I did change
I’m soon to be 55. I was diagnosed in the UK with MBL this summer. My lymphocytes were at six with over 50% of them monoclonal cells. I’ve just had my six-month check. I’ve come down to 4.8. I know that these numbers can move around quite a lot, but for now I’m really happy with the trend. I did change
Jazzandblues
in
CLL Support
5 months ago
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CLL Patients -- Venclexta
I am looking for CLL patients in the U.S. who have been diagnosed within 3-4 years and who are taking Venclexta as their treatment. I work with an organization (Patient Power) that shares patient stories to help advocate and educate others on various cancers. By sharing your journey, you can help support
I am looking for CLL patients in the U.S. who have been diagnosed within 3-4 years and who are taking Venclexta as their treatment. I work with an organization (Patient Power) that shares patient stories to help advocate and educate others on various cancers. By sharing your journey, you can help support
AlexCam
in
CLL Support
5 months ago
New to the group. Should I worry concerning my latest blood results?
New to the group. First post even if I regularly read what is posted. Dx in March 2023. But CLL for at least 2 years. Unmutated, triso 12 and q (14,19). On W&W. 53 years old. I had an appointment with my Cll doctor one month ago and a bit worried. Wbc 48 000 Monocytes 12000 ALC 29 000 LDH 550 I understood
New to the group. First post even if I regularly read what is posted. Dx in March 2023. But CLL for at least 2 years. Unmutated, triso 12 and q (14,19). On W&W. 53 years old. I had an appointment with my Cll doctor one month ago and a bit worried. Wbc 48 000 Monocytes 12000 ALC 29 000 LDH 550 I understood
povhgc
in
CLL Support
5 months ago
confused!!!
hi everyone hope you are all as well as you could be!!! I’m struggling big time now! I have a strange situation which I wonder if anyone else has? I became unwell end of July this year , tests started and diagnosed CLL it took a further few tests like MRI CT Scan and bone marrow biopsy only to be told
hi everyone hope you are all as well as you could be!!! I’m struggling big time now! I have a strange situation which I wonder if anyone else has? I became unwell end of July this year , tests started and diagnosed CLL it took a further few tests like MRI CT Scan and bone marrow biopsy only to be told
Dragonfly766
in
CLL Support
5 months ago
Transformation of Richter's Transformation Treatment to combination targeted therapy - tislelizumab +zanubrutinib (ASH 2023)
Richter's Transformation treatments are typically fixed term R-CHOP*, or modifications of that chemoimmunity therapy. So it's encouraging to hear that [i]"In a phase 2 trial, anti-PD-1 inibitor tislelizumab + next gen BTK inhibitor zanubrutinib had an overall response rate of 58.3% in patients with Richter's
Richter's Transformation treatments are typically fixed term R-CHOP*, or modifications of that chemoimmunity therapy. So it's encouraging to hear that [i]"In a phase 2 trial, anti-PD-1 inibitor tislelizumab + next gen BTK inhibitor zanubrutinib had an overall response rate of 58.3% in patients with Richter's
AussieNeil
Administrator
in
CLL Support
5 months ago
AI and CLL
it hasn’t really been covered here yet, but AI and ML is beginning to influence medicine. With all the big techs chasing AI development, the ability for AI to discover new novel proteins at a rate beyond what could ever happen in a lab. We are likely to see an uptick in treatments and maybe even cures
it hasn’t really been covered here yet, but AI and ML is beginning to influence medicine. With all the big techs chasing AI development, the ability for AI to discover new novel proteins at a rate beyond what could ever happen in a lab. We are likely to see an uptick in treatments and maybe even cures
MovingForward4423
in
CLL Support
5 months ago
How you can help make ibrutinib plus venetoclax fixed duration therapy a reality for Australians with previously untreated CLL
In Australia, no new medicine can be listed on the Pharmaceutical Benefits Scheme (PBS) unless it has first been recommended by the Pharmaceutical Benefits Advisory Committee (PBAC). In March 2024, PBAC will again consider a submission to recommend a 15-month combination therapy of ibrutinib plus venetoclax
In Australia, no new medicine can be listed on the Pharmaceutical Benefits Scheme (PBS) unless it has first been recommended by the Pharmaceutical Benefits Advisory Committee (PBAC). In March 2024, PBAC will again consider a submission to recommend a 15-month combination therapy of ibrutinib plus venetoclax
CLLerinOz
Volunteer
in
CLL Support
5 months ago
symptoms of CLL
I was diagnosed w CLL in Dec 2019. I’m on a watch and wait protocol with blood work every 6 months. My question is if I’m not on any meds yet, can I still have symptoms of occasional extreme fatigue, recurrent infections and sometimes feeling like I’m always fighting off something? Is this caused by
I was diagnosed w CLL in Dec 2019. I’m on a watch and wait protocol with blood work every 6 months. My question is if I’m not on any meds yet, can I still have symptoms of occasional extreme fatigue, recurrent infections and sometimes feeling like I’m always fighting off something? Is this caused by
RockymtnTexan
in
CLL Support
5 months ago
new to Group
hello, I’m New to this group. I’m hoping for some basic information regarding how you live with leukemia. I have chronic kidney disease. I received a deceased donor transplant 13 months ago. My transplant team has had real difficulty dealing with dangerously low white blood cell count. I’ve received
hello, I’m New to this group. I’m hoping for some basic information regarding how you live with leukemia. I have chronic kidney disease. I received a deceased donor transplant 13 months ago. My transplant team has had real difficulty dealing with dangerously low white blood cell count. I’ve received
Jayhawker
in
CLL Support
5 months ago
Richter's Transformation: standardized therapy or clinical trial
My father was diagnosed CLL 4 years ago and hasn't been treated. Recently he did a PET CT because of enlarged lmpth nodes and doctor said it's very possible he has Richter's Transformation. May I know if any one has same experience with Richters but not treated before? Could you share the treatment and
My father was diagnosed CLL 4 years ago and hasn't been treated. Recently he did a PET CT because of enlarged lmpth nodes and doctor said it's very possible he has Richter's Transformation. May I know if any one has same experience with Richters but not treated before? Could you share the treatment and
janeychen5712
in
CLL Support
5 months ago
update: Zanabrutinib vs Obenven (O&V)
We are praying for Gods wisdom (James1:5), and we’re leaning toward the Zanabrutinib. The infusions and time and distance will be impactful to my husbands work and he’s prefer to go the simpler route. We learned he’s still 13Q and TP53 negative and his lymph nodes are reduced (we have used ALT for
We are praying for Gods wisdom (James1:5), and we’re leaning toward the Zanabrutinib. The infusions and time and distance will be impactful to my husbands work and he’s prefer to go the simpler route. We learned he’s still 13Q and TP53 negative and his lymph nodes are reduced (we have used ALT for
Cb1391
in
CLL Support
5 months ago
CLL leukemia
What does it mean when your white blood count increases from 27 to 30.6 10^9/L 4.0-10.0 10^9/L
What does it mean when your white blood count increases from 27 to 30.6 10^9/L 4.0-10.0 10^9/L
Bobby13
in
CLL Support
5 months ago
FDA Investigating 'Serious Risk' of Malignancy After CAR-T Therapy - Applies to all approved therapies, but benefits still outweigh risks
From MedPage Today, by Charles Bankhead, Senior Editor, MedPage Today November 28, 2023, Last Updated November 29, 2023. Posted FYI without comment: [i]
FDA Investigating 'Serious Risk' of Malignancy After CAR-T Therapy - Applies to all approved therapies, but benefits still outweigh risks, agency
From MedPage Today, by Charles Bankhead, Senior Editor, MedPage Today November 28, 2023, Last Updated November 29, 2023. Posted FYI without comment: [i]
FDA Investigating 'Serious Risk' of Malignancy After CAR-T Therapy - Applies to all approved therapies, but benefits still outweigh risks, agency
cujoe
in
CLL Support
5 months ago
CLL and now very elevated Monocytes
I am under treatment for CLL using Venetoclax. It has been going well and my lymphocytes are controlled with a minimal dosage of Venetoclax of 50 mg.I just had labs yesterday and in 3 weeks my monocytes shot p from 5% to 15% and absolute count from. 08 to over 1000. I am so concerned I am developing
I am under treatment for CLL using Venetoclax. It has been going well and my lymphocytes are controlled with a minimal dosage of Venetoclax of 50 mg.I just had labs yesterday and in 3 weeks my monocytes shot p from 5% to 15% and absolute count from. 08 to over 1000. I am so concerned I am developing
ralphfelo
in
CLL Support
6 months ago
Zanubrutinib or O&V
The CLL specialist that we are seeing is giving my husband the choice between O&V and Zanubrutinib. We are trying to make the best decision, but struggling. They also said he can do one and switch to the other or vice a versa, but my husband works full-time and we’re a bit concerned about What seems
The CLL specialist that we are seeing is giving my husband the choice between O&V and Zanubrutinib. We are trying to make the best decision, but struggling. They also said he can do one and switch to the other or vice a versa, but my husband works full-time and we’re a bit concerned about What seems
Cb1391
in
CLL Support
6 months ago
Supportive wife
Hi there! My husband was diagnosed with CLL in 2015. He had zero issues, I was just concerned about esophageal issues (burping) and requested a 50-year full physical so we could get a scope. Within two weeks my husband had diagnosis for esophageal cancer at GE junction (14% survival rate) and CLL.
Hi there! My husband was diagnosed with CLL in 2015. He had zero issues, I was just concerned about esophageal issues (burping) and requested a 50-year full physical so we could get a scope. Within two weeks my husband had diagnosis for esophageal cancer at GE junction (14% survival rate) and CLL.
Cb1391
in
CLL Support
6 months ago
A new kid on the block? Nemtabrutinib
Hi All, There is a new targeted drug in Clinical Trials that may offer a new treatment option for us CLLers—Nemtabrutinib. For the entire article on this drug go to cancer.osu.edu and scroll down to “First in human trial of new drug raises hopes for patients with relapsed blood cancer” dated 11/06/
Hi All, There is a new targeted drug in Clinical Trials that may offer a new treatment option for us CLLers—Nemtabrutinib. For the entire article on this drug go to cancer.osu.edu and scroll down to “First in human trial of new drug raises hopes for patients with relapsed blood cancer” dated 11/06/
Varney
in
CLL Support
6 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
2 months ago
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