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Mantle cell lymphoma (MCL)
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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
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
genetic test results
Trisomy 12 is recurrently seen in multiple lymphoid neoplasms including CLL,
mantle
cell
lymphoma
, and follicular lymphoma. In the setting of CLL it is associated with an intermediate prognosis. The signal pattern observed for the D13S319/D13S25 probe showed a 13q deletion in 50% of nuclei.
Trisomy 12 is recurrently seen in multiple lymphoid neoplasms including CLL,
mantle
cell
lymphoma
, and follicular lymphoma. In the setting of CLL it is associated with an intermediate prognosis. The signal pattern observed for the D13S319/D13S25 probe showed a 13q deletion in 50% of nuclei.
Sagarcanada
in
CLL Support
1 year ago
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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
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
6 months ago
NICE: Teprotumumab for treating thyroid eye disease ID 6432 - being scoped
I have just noticed a new NICE guideline has been started. Only a skeleton at present - in the guideline scoping state. It will probably be years before it is completed. It is good that it has been selected for further work but must be devastating for anyone suffering TED to see how far away this (potential
I have just noticed a new NICE guideline has been started. Only a skeleton at present - in the guideline scoping state. It will probably be years before it is completed. It is good that it has been selected for further work but must be devastating for anyone suffering TED to see how far away this (potential
helvella
Thyroid UK
in
Thyroid UK
9 days ago
Polyneuropathy.
I treat my polyneuropathy with B6 and B12. GracePV shared their experience with B6, B12 nd B1. This inspired me to revisit my self treatment of my polyneuropathy. I came across information about Benfotiamine which is similar to Thiamine Hydrochloride and Thiamine Nitrate. There are indications
I treat my polyneuropathy with B6 and B12. GracePV shared their experience with B6, B12 nd B1. This inspired me to revisit my self treatment of my polyneuropathy. I came across information about Benfotiamine which is similar to Thiamine Hydrochloride and Thiamine Nitrate. There are indications
WIZARD6787
in
Pernicious Anaemia Society
13 days 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
7 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
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
2 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
Acalabrutinib treatment going well
I have been on one dose daily of Acalabrutinib for 4 weeks now and am doing quite well. The fatigue has improved quite a lot, although I won't be running any marathons, and I don't feel sick every day. So a good response in my opinion. Headaches and some muscle discomfort daily but Tylenol dampens
I have been on one dose daily of Acalabrutinib for 4 weeks now and am doing quite well. The fatigue has improved quite a lot, although I won't be running any marathons, and I don't feel sick every day. So a good response in my opinion. Headaches and some muscle discomfort daily but Tylenol dampens
sandybeaches
in
CLL Support
9 months ago
PV & Gene Editing for Sickle cell anemia
Has anyone been following the latest news on treatment for sickle cell anemia? Since many of us are treated with hydroxyurea which is approved for sickle cell anemia, I was wondering if this may be in our future? "The F.D.A. approved the first gene editing therapy ever, for sickle cell disease, a debilitating
Has anyone been following the latest news on treatment for sickle cell anemia? Since many of us are treated with hydroxyurea which is approved for sickle cell anemia, I was wondering if this may be in our future? "The F.D.A. approved the first gene editing therapy ever, for sickle cell disease, a debilitating
ERei
in
MPN Voice
5 months ago
Not anemia? Lab results question.
It's been a couple months since my last iron infusion. Last week, I had labs drawn, and results included: [H] WBC (18.1), RDW (16.4), Platelets (614), Creatinine (1.04); [L] MCH (24.1), MCHC (30.5), Iron (22); [LL] Iron Saturation (7). Hemoglobin was just within normal range at 11.2, and
It's been a couple months since my last iron infusion. Last week, I had labs drawn, and results included: [H] WBC (18.1), RDW (16.4), Platelets (614), Creatinine (1.04); [L] MCH (24.1), MCHC (30.5), Iron (22); [LL] Iron Saturation (7). Hemoglobin was just within normal range at 11.2, and
hollywollydoodle
in
CLL Support
9 months ago
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