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Experiences with
Small lymphocytic lymphoma (SLL)
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Palacelover
Diagnosed in July 2022 after a PET Scan and a bone marrow biopsy. Placed on a watch and wait regime. Have been experiencing many colds and chest infections over the last three months. I am now waiting on a decision from the consultant regarding a treatment regime.
Diagnosed in July 2022 after a PET Scan and a bone marrow biopsy. Placed on a watch and wait regime. Have been experiencing many colds and chest infections over the last three months. I am now waiting on a decision from the consultant regarding a treatment regime.
Palacelover
in
Non Hodgkin's Lymphoma Friends
2 months ago
One result from bone marrow aspiration:
Update: After 9 months on MSK trial 20-044, I am uMRD in blood, CT Scans show all nodes are shrunk and my Dr. is "very very please." The first report from yesterday's BMB is below. "Few B cells seen," is this something to be concerned about? The report was just posted and my Dr. is on vacation next week
Update: After 9 months on MSK trial 20-044, I am uMRD in blood, CT Scans show all nodes are shrunk and my Dr. is "very very please." The first report from yesterday's BMB is below. "Few B cells seen," is this something to be concerned about? The report was just posted and my Dr. is on vacation next week
SurfSurf
in
CLL Support
2 months ago
insurance issue
hi guys, My mother was diagnosed with her2+ve braa we ya cancer stage 4. doctor recommended the below medications : Paclitaxel + cyclophosphamide + phesgo+ zolodronic acid . I have corporate insurance in new India insurance with mediassist. These people are not approving phesgo which is targeted
hi guys, My mother was diagnosed with her2+ve braa we ya cancer stage 4. doctor recommended the below medications : Paclitaxel + cyclophosphamide + phesgo+ zolodronic acid . I have corporate insurance in new India insurance with mediassist. These people are not approving phesgo which is targeted
Srikalakm
in
Breast Cancer India
2 months ago
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Beaconthecat
Diagnosed last April thru a lymph node biopsy....results SLL...currently on W&W...a few more nodes have emerged but feel good, no symptoms, exercise hard and just living life...
Diagnosed last April thru a lymph node biopsy....results SLL...currently on W&W...a few more nodes have emerged but feel good, no symptoms, exercise hard and just living life...
Beaconthecat
in
CLL Support
2 months ago
The 2024 Global Patient Survey invites CLL patients and caregivers to share their experiences
Every two years, the Lymphoma Coalition, a worldwide network of patient groups with a full or partial focus on providing support to lymphoma patients, including those with CLL, undertakes a
Global Patient Survey
. The 2024 survey gives you
an opportunity to share your experience with CLL
Every two years, the Lymphoma Coalition, a worldwide network of patient groups with a full or partial focus on providing support to lymphoma patients, including those with CLL, undertakes a
Global Patient Survey
. The 2024 survey gives you
an opportunity to share your experience with CLL
CLLerinOz
Volunteer
in
CLL Support
2 months ago
Zanubrutinib has been listed on the Pharmaceutical Benefits Scheme in Australia as a first line treatment for CLL/SLL
[/i] The listing for zanubrutinib, which was uploaded to the PBS site today, states: [i]"Chronic
lymphocytic
leukaemia (CLL) or
small
lymphocytic
lymphoma
(SLL)[/i] [i]Treatment Phase: First line drug treatment of this indication[/i] [i]Clinical criteria:[/i] [i]The condition must be untreated with
[/i] The listing for zanubrutinib, which was uploaded to the PBS site today, states: [i]"Chronic
lymphocytic
leukaemia (CLL) or
small
lymphocytic
lymphoma
(SLL)[/i] [i]Treatment Phase: First line drug treatment of this indication[/i] [i]Clinical criteria:[/i] [i]The condition must be untreated with
CLLerinOz
Volunteer
in
CLL Support
8 months ago
PNH - blood test
I just received this PNH test result and was wondering if anyone knows what it was testing for. I don't see my doctor until next week and I am curious. Thanks, Jack INTERPRETATION Flow Cytometry analysis did not detect RBC and WBC with PNH-associated phenotype. RBC, Granulocytes and Monocytes show
I just received this PNH test result and was wondering if anyone knows what it was testing for. I don't see my doctor until next week and I am curious. Thanks, Jack INTERPRETATION Flow Cytometry analysis did not detect RBC and WBC with PNH-associated phenotype. RBC, Granulocytes and Monocytes show
rcusher
in
CLL Support
2 months ago
Looking for some assistance
Hello, I've recently become very intolerant to gluten which has been a bit of a shock. I read online that it can be triggered by anxiety and it happened at the time of a serious family crisis. Can anyone tell me if this has happened to them and if so, if it's likely to recede or am I am stuck with it
Hello, I've recently become very intolerant to gluten which has been a bit of a shock. I read online that it can be triggered by anxiety and it happened at the time of a serious family crisis. Can anyone tell me if this has happened to them and if so, if it's likely to recede or am I am stuck with it
alliso
in
Gluten Free Guerrillas
3 months ago
Secondary Cancers after CAR-T Cell Therapy
From New England Journal of Medicine dated 24th Jan 2024 (article is for subscribers only) This brief report states: [i]The demonstrated efficacy of the current generation of approved CAR-T products comes along with several well-described safety concerns, including risks of cytokine release syndrome
From New England Journal of Medicine dated 24th Jan 2024 (article is for subscribers only) This brief report states: [i]The demonstrated efficacy of the current generation of approved CAR-T products comes along with several well-described safety concerns, including risks of cytokine release syndrome
Jm954
Administrator
in
CLL Support
3 months ago
Update 8 years, since I started the captivate trial, and doing well so far! UMRD. I plus V. Now just on Ibruvica for many years.
Hello, I am pleased to post that it has been 8 years since I started the captivate trial, and it has gone very well so far. This is even more remarkable since I was/ am 17 P deleted with large lymph nodes a complex karyotype to start. Trisomy 12 as well to start. I have to thank CLL Society
Hello, I am pleased to post that it has been 8 years since I started the captivate trial, and it has gone very well so far. This is even more remarkable since I was/ am 17 P deleted with large lymph nodes a complex karyotype to start. Trisomy 12 as well to start. I have to thank CLL Society
Hoffy
in
CLL Support
4 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
Gazyva and Ventalox
I started G/V treatment 4 months ago. Everything went smoothly for 3.5 months. Now some lymph nodes are appearing on my neck. My Doc stopped the treatment and called for a Pet scan and a biopsy of lymphnode. Anybody been in my situation and what was the plan, diagnosis, options etc.?? Very Nervous, Rob
I started G/V treatment 4 months ago. Everything went smoothly for 3.5 months. Now some lymph nodes are appearing on my neck. My Doc stopped the treatment and called for a Pet scan and a biopsy of lymphnode. Anybody been in my situation and what was the plan, diagnosis, options etc.?? Very Nervous, Rob
CityL
in
CLL Support
5 months ago
FDA Approves Zanubrutinib for Chronic Lymphocytic Leukemia or Small Lymphocytic Lymphom
with chronic
lymphocytic
leukemia or
small
lymphocytic
lymphoma
.
with chronic
lymphocytic
leukemia or
small
lymphocytic
lymphoma
.
lankisterguy
Volunteer
in
CLL Support
1 year ago
B CELL lymphoma
Hello friends, Question- had a fish test done and the test revealed negative for B Cell lymphoma has anyone had this reading before and still have CLL? lol I’m totally confused.. nothing new there! I did call the Doc to see what he thinks haven’t heard anything yet. Thought I would ask to see if you
Hello friends, Question- had a fish test done and the test revealed negative for B Cell lymphoma has anyone had this reading before and still have CLL? lol I’m totally confused.. nothing new there! I did call the Doc to see what he thinks haven’t heard anything yet. Thought I would ask to see if you
Tchapman
in
CLL Support
6 months ago
RNA Test Outperforms the Fecal Immunochemical Test for Detection of Colorectal Cancer
In the United States, colorectal cancer (CRC) is the second most common cause of cancer deaths when numbers for men and women are combined. It's expected to cause about 52,550 deaths during 2023 https://www.cancer.org/cancer/types/colon-rectal-cancer/about/key-statistics.html As CLL patients, we carry
In the United States, colorectal cancer (CRC) is the second most common cause of cancer deaths when numbers for men and women are combined. It's expected to cause about 52,550 deaths during 2023 https://www.cancer.org/cancer/types/colon-rectal-cancer/about/key-statistics.html As CLL patients, we carry
bennevisplace
in
CLL Support
7 months ago
Results on triple combination (A+V+O) for high risk patients -with-chronic-lymphocytic-leukemia-or-small-lymphocytic-lymphoma-cll
with a low 2.9% incidence of atrial fibrillation and zero of the more serious abnormal ventricular heart irregularities - See report at https://cllsociety.org/2023/01/ash-2022-dr-christine-ryan-on-triple-combination-acalabrutinib-venetoclax-and-obinutuzumab-for-high-risk-patients-with-chronic-
lymphocytic
-leukemia-or-
small
-
lymphocytic
-
lymphoma
-cll-sll
with a low 2.9% incidence of atrial fibrillation and zero of the more serious abnormal ventricular heart irregularities - See report at https://cllsociety.org/2023/01/ash-2022-dr-christine-ryan-on-triple-combination-acalabrutinib-venetoclax-and-obinutuzumab-for-high-risk-patients-with-chronic-
lymphocytic
-leukemia-or-
small
-
lymphocytic
-
lymphoma
-cll-sll
spi3
in
CLL Support
1 year ago
Richter’s Transformation
A reminder to everyone going through the treatment process. Currently, Richter's cancer is not considered an incurable cancer or one with a poor prognosis. It is currently considered an aggressive lymphoma. Mortality is the same as that of diffuse large B-cell lymphoma. The greater the tumor uptake,
A reminder to everyone going through the treatment process. Currently, Richter's cancer is not considered an incurable cancer or one with a poor prognosis. It is currently considered an aggressive lymphoma. Mortality is the same as that of diffuse large B-cell lymphoma. The greater the tumor uptake,
Priss69
in
CLL Support
8 months ago
Clinical trial with monoclonal antibodies?
I've been asked to participate in a clinical trial in which I get an infusion of monoclonal antibodies. The team is wanting to know if this would help those with blood cancers have higher resistance to Covid. Any thoughts? I will discuss with my doctor but wanted more feedback.
I've been asked to participate in a clinical trial in which I get an infusion of monoclonal antibodies. The team is wanting to know if this would help those with blood cancers have higher resistance to Covid. Any thoughts? I will discuss with my doctor but wanted more feedback.
Tangolover
in
CLL Support
8 months ago
high monocytes
am at end of cycle 3 of o+v Today monocytes 31% I did need neupogen shot - wbc 1.6 and anc .6 does anyone know if this monocyte number is cause for concern, has anyone had this kind of thing before? This no has never been above 20 for me since I started treatment. I have had zero side effects.
am at end of cycle 3 of o+v Today monocytes 31% I did need neupogen shot - wbc 1.6 and anc .6 does anyone know if this monocyte number is cause for concern, has anyone had this kind of thing before? This no has never been above 20 for me since I started treatment. I have had zero side effects.
SurfSurf
in
CLL Support
8 months ago
swollen armpit prevnar 20
hello group, I’m relatively newly diagnosed with SLL (June 2022). Mild disease so far; watch and wait. Favorable genetic markers so far (t12/18 mutated). 46 yr female in good shape. Normal blood work. I recently had the prevnar 20 vax per CLL specialist. On day 2 post vax the lymph node in my right
hello group, I’m relatively newly diagnosed with SLL (June 2022). Mild disease so far; watch and wait. Favorable genetic markers so far (t12/18 mutated). 46 yr female in good shape. Normal blood work. I recently had the prevnar 20 vax per CLL specialist. On day 2 post vax the lymph node in my right
Capecodlover34
in
CLL Support
8 months ago
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