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Small lymphocytic lymphoma (SLL)
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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
4 months ago
Sclerosing Mesenteritis
hi folks this is my first time posting here, I have lupus SLE and recently been diagnosed with sclerosing Mesenteritis which is extremely rare - I have ended up in hospital 3 times In last 3 months - I have excruciating pain in my tummy with it, at first they thought it was my lupus but it’s not - I
hi folks this is my first time posting here, I have lupus SLE and recently been diagnosed with sclerosing Mesenteritis which is extremely rare - I have ended up in hospital 3 times In last 3 months - I have excruciating pain in my tummy with it, at first they thought it was my lupus but it’s not - I
svfarmer
in
Scleroderma & Raynaud's UK (SRUK)
5 months ago
'Wednesday Word"
Since my question yesterday was concerning 'brain fog', I thought my word for today should be [u][i]
encephalopathy
[/i][/u] - here are specifics about the word This is a blanket term referring to any brain dysfunction. It can commonly be called 'brain fog'. However, [u][i]
encephalopathy
Since my question yesterday was concerning 'brain fog', I thought my word for today should be [u][i]
encephalopathy
[/i][/u] - here are specifics about the word This is a blanket term referring to any brain dysfunction. It can commonly be called 'brain fog'. However, [u][i]
encephalopathy
DonnaBoll
Administrator
in
PBC Foundation
5 months ago
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Activating lipid nanoparticles can streamline the production of CAR T-cells for cancer immunotherapy
A bio- engineering breakthrough is reported here https://phys.org/news/2024-03-method-car-cells-lipid-nanoparticles.html and the article includes a link to the open access research paper. Sorry, that's all folks. This is a phone and I'm on holiday. Italy shouldn't be this wet. Ciao.
A bio- engineering breakthrough is reported here https://phys.org/news/2024-03-method-car-cells-lipid-nanoparticles.html and the article includes a link to the open access research paper. Sorry, that's all folks. This is a phone and I'm on holiday. Italy shouldn't be this wet. Ciao.
bennevisplace
in
CLL Support
5 months ago
Palacelover
Hello HealthUnlocked family:Is anyone out there aware of the medication named Brukinsa, which contains the ingredient zanubrutinib; apparently it is a medication that can control the btk protein that is generated by the kind of Lymphoma that I have, which is WM. If anyone can give me any insights, such
Hello HealthUnlocked family:Is anyone out there aware of the medication named Brukinsa, which contains the ingredient zanubrutinib; apparently it is a medication that can control the btk protein that is generated by the kind of Lymphoma that I have, which is WM. If anyone can give me any insights, such
Palacelover
in
Non Hodgkin's Lymphoma Friends
5 months ago
Richter’s Anxiety
Good morning. I have a friend in his 50s with aggressive unmutated IGHV. I am in my early 50s and am Trisomy 12 unmutated and recently diagnosed. Both of us have been told that we are at increased risk for Richter’s. Figuring out what this means is tough. There are top researchers who say that 5 to
Good morning. I have a friend in his 50s with aggressive unmutated IGHV. I am in my early 50s and am Trisomy 12 unmutated and recently diagnosed. Both of us have been told that we are at increased risk for Richter’s. Figuring out what this means is tough. There are top researchers who say that 5 to
Hidden
in
CLL Support
5 months ago
first line treatment with bendamustin and rithoximab
I had 6 month first line treatment with bendamustin and rithoximab in 2022 september ended. .when i start my treatment my numbers was very high wbc 146 rbc was low in 2022 janeuary the numbers was wbc126 rbc 3.23 hgb 10.9 plt 135 LDh 920. because of high in ldh one of recent doctor said may be
I had 6 month first line treatment with bendamustin and rithoximab in 2022 september ended. .when i start my treatment my numbers was very high wbc 146 rbc was low in 2022 janeuary the numbers was wbc126 rbc 3.23 hgb 10.9 plt 135 LDh 920. because of high in ldh one of recent doctor said may be
09123836306
in
CLL Support
5 months ago
Still on hold for stem cell transplant
David has now completed 3 cycles of Vidaza. He had a bone marrow biopsy several weeks ago. At first we thought the results were good, that his cancer cells had been reduced sufficiently to proceed with transplant. After our local oncologist spoke to the transplant specialist at Mayo, we received word
David has now completed 3 cycles of Vidaza. He had a bone marrow biopsy several weeks ago. At first we thought the results were good, that his cancer cells had been reduced sufficiently to proceed with transplant. After our local oncologist spoke to the transplant specialist at Mayo, we received word
dwolden
in
CLL Support
5 months ago
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
5 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
5 months ago
Real-world incidence and prevention of tumor lysis syndrome (TLS) in chronic lymphocytic leukemia (CLL) treated with venetoclax. From MSK
We aimed to determine the incidence of and risk factors for TLS among patients with CLL/
small
lymphocytic
lymphoma
(SLL) who received treatment with venetoclax at our institution from 1/1/2016 to 12/31/2020. We included 616 venetoclax escalations among 136 pts with CLL.
We aimed to determine the incidence of and risk factors for TLS among patients with CLL/
small
lymphocytic
lymphoma
(SLL) who received treatment with venetoclax at our institution from 1/1/2016 to 12/31/2020. We included 616 venetoclax escalations among 136 pts with CLL.
AussieNeil
Partner
in
CLL Support
6 days 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
6 months ago
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
6 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
Administrator
in
CLL Support
6 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
6 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
7 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
7 months ago
CAR-T for CLL Hits Goal of Mid-Stage Trial - All patients had progressed on BTK inhibitors & most had failed venetoclax - MedPageToday, 6/12
[/i] [i]A single infusion of the chimeric antigen receptor (CAR) T-cell product lisocabtagene maraleucel (liso-cel; Breyanzi) was shown to induce complete response or remission in patients with relapsed or refractory chronic
lymphocytic
leukemia (CLL) or
small
lymphocytic
lymphoma
(SLL), the phase
[/i] [i]A single infusion of the chimeric antigen receptor (CAR) T-cell product lisocabtagene maraleucel (liso-cel; Breyanzi) was shown to induce complete response or remission in patients with relapsed or refractory chronic
lymphocytic
leukemia (CLL) or
small
lymphocytic
lymphoma
(SLL), the phase
cujoe
in
CLL Support
1 year 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
8 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
Administrator
in
CLL Support
1 year ago
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