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I’m still here :)
it’s been a while and my last post was not very positive . This is a quick update . I’m still unclear as to how I got here with my illness but I received palliative chemotherapy six cylcles one every three weeks. I think it was a variation of chop plus an immunotherapy drug beginning with B . The treatment
it’s been a while and my last post was not very positive . This is a quick update . I’m still unclear as to how I got here with my illness but I received palliative chemotherapy six cylcles one every three weeks. I think it was a variation of chop plus an immunotherapy drug beginning with B . The treatment
Hilo13
in
CLL Support
10 days ago
Clinical trial using dandelion root for leukemia in Canada.
H.”ere is an article that some might be interested in: There are many more news articles about this. The research was done at University of Windsor in Canada and the clinical trial is at the Windsor Cancer Center. There is also some ongoing research of cancer cells and various types of mushroom
H.”ere is an article that some might be interested in: There are many more news articles about this. The research was done at University of Windsor in Canada and the clinical trial is at the Windsor Cancer Center. There is also some ongoing research of cancer cells and various types of mushroom
montieth
in
CLL Support
20 days ago
FDA Investigating 'Serious Risk' of Malignancy After CAR-T Therapy - Applies to all approved therapies, but benefits still outweigh risks
"Finally, we know that cancer immunotherapy such as checkpoint blockade for solid tumors, which does not rely on gene therapy, can very rarely result in T-cell
lymphomas
."
"Finally, we know that cancer immunotherapy such as checkpoint blockade for solid tumors, which does not rely on gene therapy, can very rarely result in T-cell
lymphomas
."
cujoe
in
CLL Support
10 months ago
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CLL treatment
I have CLL. I be am 4 months into a 1 year targeted immunotherapy plan. I receive a monthly infusion of Obitinubinazab and 300mg venclexta daily. I am very tired everyday. Went from 400mg to 300mg to try and help. Still exhausted. Anyone have similar experience ?
I have CLL. I be am 4 months into a 1 year targeted immunotherapy plan. I receive a monthly infusion of Obitinubinazab and 300mg venclexta daily. I am very tired everyday. Went from 400mg to 300mg to try and help. Still exhausted. Anyone have similar experience ?
IhaveCLL1
in
CLL Support
2 months ago
Continued Journey
I’ve had the Bone Marrow Transplant!!! That was actually the easiest part. 5 hours of fluids leading up to the BMT and the previous 5 days of chemo infusions (day5 was the worst) were much harder. Chemo: Fladarabine -6 thru-2 with addition of Melphalan on day-2. When you start treatment (chemo) for
I’ve had the Bone Marrow Transplant!!! That was actually the easiest part. 5 hours of fluids leading up to the BMT and the previous 5 days of chemo infusions (day5 was the worst) were much harder. Chemo: Fladarabine -6 thru-2 with addition of Melphalan on day-2. When you start treatment (chemo) for
FiArt12X
in
CLL Support
3 months ago
A Secondary Primary Malignancy hit me
The doctors tell us that you don't die from CLL; you die with CLL. What they don't tell you very often is that even though it isn't the CLL that gets you, it could very well be a secondary primary malignancy caused by the CLL that does it. Bennevisplace wrote on this a few months ago; i.e. the fact
The doctors tell us that you don't die from CLL; you die with CLL. What they don't tell you very often is that even though it isn't the CLL that gets you, it could very well be a secondary primary malignancy caused by the CLL that does it. Bennevisplace wrote on this a few months ago; i.e. the fact
hhk50
in
CLL Support
3 months ago
Remission
Back in November I noticed a swelling under my arm. My doctor set me up with ultrasounds and found it was swollen lymph nodes. After the surgery in December to remove the largest one, I was told I had SLL. My world turned upside down. I had a PET scan in January and I lit up like a Christmas tree. The
Back in November I noticed a swelling under my arm. My doctor set me up with ultrasounds and found it was swollen lymph nodes. After the surgery in December to remove the largest one, I was told I had SLL. My world turned upside down. I had a PET scan in January and I lit up like a Christmas tree. The
Bobby9toes
in
CLL Support
3 months ago
MRD - Flow test compared to clonoSEQ
I j
ust got this result after a year of Acalabrutinib and Venetoclax on the Majic trial.
I'm currently waiting for the clonoSEQ MRD6 results. Below are the FLOW test results. Are they comparable. If so, I have a long long way to go for MRD6.
Bone marrow, flow cytometric immunophenotyping
I j
ust got this result after a year of Acalabrutinib and Venetoclax on the Majic trial.
I'm currently waiting for the clonoSEQ MRD6 results. Below are the FLOW test results. Are they comparable. If so, I have a long long way to go for MRD6.
Bone marrow, flow cytometric immunophenotyping
JDG45
in
CLL Support
3 months ago
zanubrutinib
hi, The person I’m caring for has had non-Hodgkin b cell lymphoma 3 times. This time they are treating her with Zanubrutinib. She’s been on it for 2 weeks and her limbs have become very swollen with what looks like lymphodema. Has anyone had any experience with this side effect? She is very worried
hi, The person I’m caring for has had non-Hodgkin b cell lymphoma 3 times. This time they are treating her with Zanubrutinib. She’s been on it for 2 weeks and her limbs have become very swollen with what looks like lymphodema. Has anyone had any experience with this side effect? She is very worried
Buster2024
in
CLL Support
3 months ago
cervical stenosis and pain relief
just wondering if anyone has any experience with heat belts for pain relief? Hubby suffers from a degenerative spine (cervical stenosis) and was just starting to feel slightly better after sleeping on our new memory foam mattress for just two nights. Unfortunately we came to our holiday cottage in
just wondering if anyone has any experience with heat belts for pain relief? Hubby suffers from a degenerative spine (cervical stenosis) and was just starting to feel slightly better after sleeping on our new memory foam mattress for just two nights. Unfortunately we came to our holiday cottage in
Doraflora
in
Pain Concern
3 months ago
flowers
Hi folks thought I would post this pic of the lupins In my garden, they have self seeded all over the path and look beautiful . An update on me, I’m due to start Rituximab soon as Methotrexate has stopped working on me and my lupus is not under control at all, I’m also on steriods at the moment. I’ve
Hi folks thought I would post this pic of the lupins In my garden, they have self seeded all over the path and look beautiful . An update on me, I’m due to start Rituximab soon as Methotrexate has stopped working on me and my lupus is not under control at all, I’m also on steriods at the moment. I’ve
svfarmer
in
LUPUS UK
4 months ago
How's Remission?
Hi friends, it's been awhile since I've posted here. I've been in remission for 3 and a half years. First treatment was Ibrutinib for one year then Obintuzimab and Veneteclax for 2 years. Just to give you an idea of what my treatment was. So my question is, if you too have been in remission, besides
Hi friends, it's been awhile since I've posted here. I've been in remission for 3 and a half years. First treatment was Ibrutinib for one year then Obintuzimab and Veneteclax for 2 years. Just to give you an idea of what my treatment was. So my question is, if you too have been in remission, besides
lorna222
in
CLL Support
4 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
5 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
5 months ago
Wendy
My husband was diagnosed in 2010 at the age of 40. 2013 he had FCR. 11 years later, he is in week 5 of venteclax, Rituximab to follow next month. Swollen lymph nodes have disappeared.
My husband was diagnosed in 2010 at the age of 40. 2013 he had FCR. 11 years later, he is in week 5 of venteclax, Rituximab to follow next month. Swollen lymph nodes have disappeared.
Fluxthecat10
in
CLL Support
5 months ago
Cll to Hodgkins lymphoma
My husband had Cll 11 years and started treatment in Oct, 2023 with Calquence. It was working, but not as effectively as desired. They then added Venclexta in Dec. He still wasn’t getting better, so after a pet scan and lymph biopsy, it was determined he now also has Hodgkin’s lymphoma. Apparently,
My husband had Cll 11 years and started treatment in Oct, 2023 with Calquence. It was working, but not as effectively as desired. They then added Venclexta in Dec. He still wasn’t getting better, so after a pet scan and lymph biopsy, it was determined he now also has Hodgkin’s lymphoma. Apparently,
Junebug20
in
CLL Support
5 months ago
need your help to learn about Clonal Hematopoiesis.
Greetings.Diagnosis with CLL/ Lymphoma in 2013, Was on Watchful Wait for almost 10 years, then started treatment with BTKI/Brukinsa for 9 months and had to stop the treatment due to the side effects, 3 months ago. Had a monthly blood tests in last 3 month while on Watchful Wait. By reviewing all the
Greetings.Diagnosis with CLL/ Lymphoma in 2013, Was on Watchful Wait for almost 10 years, then started treatment with BTKI/Brukinsa for 9 months and had to stop the treatment due to the side effects, 3 months ago. Had a monthly blood tests in last 3 month while on Watchful Wait. By reviewing all the
sunsetssr
in
CLL Support
5 months ago
Recently started Acalabrutinib
Hi everyone, My father has recently started Acalabrutinib 5 days ago. He was diagnosed with CLL in 2007 and has received FCR (twice) and Benda-Ritux once. His CLL only went into partial remission on benda-ritux and has come back after one year since his last cycle of BR. I am worried regarding the
Hi everyone, My father has recently started Acalabrutinib 5 days ago. He was diagnosed with CLL in 2007 and has received FCR (twice) and Benda-Ritux once. His CLL only went into partial remission on benda-ritux and has come back after one year since his last cycle of BR. I am worried regarding the
Healthgiddy
in
CLL Support
6 months ago
Rise in WBC
Hello to all, My husband has CLL, he has also been treated for metastatic melanoma which from his latest CT scan is NED. He will receive his last immunotherapy infusion next week. We are beyond grateful. However his blood work taken yesterday showed and increase in his WBC from 14.5 last month to the
Hello to all, My husband has CLL, he has also been treated for metastatic melanoma which from his latest CT scan is NED. He will receive his last immunotherapy infusion next week. We are beyond grateful. However his blood work taken yesterday showed and increase in his WBC from 14.5 last month to the
313313
in
CLL Support
6 months ago
here we are again
my husbands blood work did not come back good after being great for over 5 years on Imbruvica. Oncologist ordered a Pet Scan since he has never had one. Just CT scans. And more comprehensive blood work. To say I’m a mess is an understatement. We thought imbruvica was the answer to our prayers for it
my husbands blood work did not come back good after being great for over 5 years on Imbruvica. Oncologist ordered a Pet Scan since he has never had one. Just CT scans. And more comprehensive blood work. To say I’m a mess is an understatement. We thought imbruvica was the answer to our prayers for it
CLLWife
in
CLL Support
6 months ago
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