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Antibody test, optimal timing
hi from Poland I have been on Zanubrutinib (small molecule inhibitor of Bruton's tyrosine kinase) for three years. I had a moderna booster two weeks ago. I wonder after how long to do the antibody test. I called 5 different labs and they suggested doing a blood test over a period of two weeks to six
hi from Poland I have been on Zanubrutinib (small molecule inhibitor of Bruton's tyrosine kinase) for three years. I had a moderna booster two weeks ago. I wonder after how long to do the antibody test. I called 5 different labs and they suggested doing a blood test over a period of two weeks to six
BART4
in
CLL Support
3 years ago
Abstract in regard to P-LL as a diagnosis entity is an interesting read and proposal
While there is no definitive decision, there is clinically-based validity to the suggestion. We have a few members who are diagnosed P-LL (P-LL is rarer than CLL, so numbers are few) who can relate to this as they are being treated much the same as we with CLL. https://mdanderson.elsevierpure.com
While there is no definitive decision, there is clinically-based validity to the suggestion. We have a few members who are diagnosed P-LL (P-LL is rarer than CLL, so numbers are few) who can relate to this as they are being treated much the same as we with CLL. https://mdanderson.elsevierpure.com
cllady01
Volunteer
in
CLL Support
3 years ago
Important SARS-CoV-2 and Covid-19 information for Chronic Lymphocytic Leukaemia/CLL patients
Checklists for CLL patients preparing for pre and post COVID-19 exposure https://cllsociety.org/2021/07/covid-19-plan-checklists-for-chronic-
lymphocytic
-
leukemia
-cll-preparing-for-pre-and-post-covid-19-exposure/
COVID: Staying Safe As The Virus Evolves - LLS Podcast / CLL Society’s COVID-19 Update
Checklists for CLL patients preparing for pre and post COVID-19 exposure https://cllsociety.org/2021/07/covid-19-plan-checklists-for-chronic-
lymphocytic
-
leukemia
-cll-preparing-for-pre-and-post-covid-19-exposure/
COVID: Staying Safe As The Virus Evolves - LLS Podcast / CLL Society’s COVID-19 Update
CLLerinOz
Administrator
in
CLL Support
2 years ago
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Curious -- family leukemia history anyone?
I recall reading early on that CLL was thought to be possibly genetic, with 20 years younger in succeeding generations. I have two sons. I was diagnosed at 70. Ironically or not, one of my 4 uncles got leukemia around 90 (couldn't find out what kind), so I've wanted to follow the genetic implications
I recall reading early on that CLL was thought to be possibly genetic, with 20 years younger in succeeding generations. I have two sons. I was diagnosed at 70. Ironically or not, one of my 4 uncles got leukemia around 90 (couldn't find out what kind), so I've wanted to follow the genetic implications
Vlaminck
in
CLL Support
3 years ago
What Factors Impact CLL Treatment Options? -- Patient Empowerment Network --Dr. Lyndsey Roeker is a hematologic oncologist at Memorial Sloan
May 14, 2021 click to view video https://powerfulpatients.org/2021/05/14/what-factors-impact-cll-treatment-options/ What are the factors that impact chronic
lymphocytic
leukemia
(CLL) treatment options? Dr.
May 14, 2021 click to view video https://powerfulpatients.org/2021/05/14/what-factors-impact-cll-treatment-options/ What are the factors that impact chronic
lymphocytic
leukemia
(CLL) treatment options? Dr.
lankisterguy
Volunteer
in
CLL Support
3 years ago
The Leukemia & Lymphoma Society’s (LLS) Co-Pay Assistance Program assists with out-of-pocket expenses up to $11,000
- Chronic
Lymphocytic
Leukemia
(CLL) $8,000 Chronic
lymphocytic
leukemia
(CLL/SLL) B-cell prolymphocytic leukemia (B-PLL) Hairy cell leukemia - Co-Pay Assistance Program Questions?
- Chronic
Lymphocytic
Leukemia
(CLL) $8,000 Chronic
lymphocytic
leukemia
(CLL/SLL) B-cell prolymphocytic leukemia (B-PLL) Hairy cell leukemia - Co-Pay Assistance Program Questions?
lankisterguy
Volunteer
in
CLL Support
3 years ago
INF+ ATO Study, "A knockout combination for MPN stem cells"
Some have likely seen this study. I looked into it some more today and realize it's a neat pre-clinical result. This is just FYI right now but it's an example of potential good things to come. (I just noticed Manouche posted on this last year, anyway maybe some new details here) "JAK2V617F myeloproliferative
Some have likely seen this study. I looked into it some more today and realize it's a neat pre-clinical result. This is just FYI right now but it's an example of potential good things to come. (I just noticed Manouche posted on this last year, anyway maybe some new details here) "JAK2V617F myeloproliferative
EPguy
in
MPN Voice
3 years ago
APS and Lymphoma. Newly diagnosed, need advice
Hello everyone, I had an axillary lymph node biopsy and just found out that I have follicular lymphoma. I am looking for guidance and advice from anyone who has this type of cancer. Thank you ♡♡♡
Hello everyone, I had an axillary lymph node biopsy and just found out that I have follicular lymphoma. I am looking for guidance and advice from anyone who has this type of cancer. Thank you ♡♡♡
Piscesdreamer
in
Hughes Syndrome APS Forum
3 years ago
Is strength training helpful?
Hi Everyone, I have just joined and also recently diagnosed with cll. I have learned that diet and exercise is very helpful with controlling cll. I just wondered if strength/weight training was also helpful? Thanks
Hi Everyone, I have just joined and also recently diagnosed with cll. I have learned that diet and exercise is very helpful with controlling cll. I just wondered if strength/weight training was also helpful? Thanks
arsenal0
in
CLL Support
3 years ago
Great Antibodies after 3rd Primary Dose of Pfizer
Hi, I was diagnosed with CLL in September 2019 and am on watch and wait. Six weeks after my second Astra Zeneca vaccination I took a Covid Antibody test from Testing For All and my result was 106.00 U/ml. Today I got my result 6 weeks following my third Primary Dose of Pfizer. I am extremely happy
Hi, I was diagnosed with CLL in September 2019 and am on watch and wait. Six weeks after my second Astra Zeneca vaccination I took a Covid Antibody test from Testing For All and my result was 106.00 U/ml. Today I got my result 6 weeks following my third Primary Dose of Pfizer. I am extremely happy
1Surfer9
in
CLL Support
3 years ago
Vaccine third dose experience!
Hi I’m a regular visitor here but I think this my first post! I have essential thrombocythaemia and am a patient of Haematology at Bedford Hospital (who I must say are excellent). However, I thought people might be interested in my experience of trying to obtain a third COVID-19 vaccine dose. I received
Hi I’m a regular visitor here but I think this my first post! I have essential thrombocythaemia and am a patient of Haematology at Bedford Hospital (who I must say are excellent). However, I thought people might be interested in my experience of trying to obtain a third COVID-19 vaccine dose. I received
Maythyme
in
MPN Voice
3 years ago
Ironman 70.3 Waco Triathlon with CLL/SLL
Hi all! Raced in Ironman 70.3 Waco yesterday! My 2nd half since being diagnosed with CLL/SLL in 2011. I turn 50 in January. You don’t need to do an Ironman, but you do need to MOVE! *And, walking absolutely counts as exercise! Take your time, listen to your body & do what’s fun (for you)! Almost no
Hi all! Raced in Ironman 70.3 Waco yesterday! My 2nd half since being diagnosed with CLL/SLL in 2011. I turn 50 in January. You don’t need to do an Ironman, but you do need to MOVE! *And, walking absolutely counts as exercise! Take your time, listen to your body & do what’s fun (for you)! Almost no
BJollie
in
CLL Support
3 years ago
Greetings
Hi there, new to the group so thought i would introduce myself. I had PV diagnosed in 2009 but mutated to MF confirmed in April 2021, on Jakavi to reduce my massive splenomegaly and doing well. Hoping for a SCT in the New Year. I’m just turned 59, healthy and pretty fit other than the MF and associated
Hi there, new to the group so thought i would introduce myself. I had PV diagnosed in 2009 but mutated to MF confirmed in April 2021, on Jakavi to reduce my massive splenomegaly and doing well. Hoping for a SCT in the New Year. I’m just turned 59, healthy and pretty fit other than the MF and associated
Hitchc0tt5
in
MPN Voice
3 years ago
About MF progression
I have progressed this year to MF from ET with grade 3 fibrosis. I'm reasonably well in myself but my platelets have slumped to 70. I started on 5mg ruxolitinib 6 weeks ago so I know it is too early to say if it's working, however I would like to know more about how it how it feels to have MF getting
I have progressed this year to MF from ET with grade 3 fibrosis. I'm reasonably well in myself but my platelets have slumped to 70. I started on 5mg ruxolitinib 6 weeks ago so I know it is too early to say if it's working, however I would like to know more about how it how it feels to have MF getting
Scaredy_cat
in
MPN Voice
3 years ago
Night Sweats
Hi everyone, I am looking for some feedback on night sweats. 42 years old (live in Ireland), diagnosed with ET in 2017, progressed to MF in 2020. Been having horrendous night sweats since February 2018. Under the care of Haematologist I have tried Jakafi, HU, and Interferon, none of which had any impact
Hi everyone, I am looking for some feedback on night sweats. 42 years old (live in Ireland), diagnosed with ET in 2017, progressed to MF in 2020. Been having horrendous night sweats since February 2018. Under the care of Haematologist I have tried Jakafi, HU, and Interferon, none of which had any impact
Navy12
in
MPN Voice
3 years ago
The Leukemia & Lymphoma Society’s National Patient Registry COVID-19 vaccination antibody results - published today (Greenberg et al)
Mantle cell lymphoma 56 Marginal zone lymphoma 38 Chronic
lymphocytic
leukemia
36 Waldenstrom’s macroglobulinemia 26 Follicular lymphoma 22 Non-Hodgkin lymphoma, not specified 21 Diffuse large B cell lymphoma 21 T cell lymphoma 15 Acute
lymphocytic
leukemia
12 Acute myeloid leukemia 9 Multiple
Mantle cell lymphoma 56 Marginal zone lymphoma 38 Chronic
lymphocytic
leukemia
36 Waldenstrom’s macroglobulinemia 26 Follicular lymphoma 22 Non-Hodgkin lymphoma, not specified 21 Diffuse large B cell lymphoma 21 T cell lymphoma 15 Acute
lymphocytic
leukemia
12 Acute myeloid leukemia 9 Multiple
lankisterguy
Volunteer
in
CLL Support
3 years ago
CD38 In CLL
Went for my annual checkup yesterday, WBC at 19.1 from 15.1 last year. Not enough WBC to know if mutated or not. The doctor did confirm I'm don't have 17p but I do have CD38.. according to Goggle I may see God sooner! What's the deal?
Went for my annual checkup yesterday, WBC at 19.1 from 15.1 last year. Not enough WBC to know if mutated or not. The doctor did confirm I'm don't have 17p but I do have CD38.. according to Goggle I may see God sooner! What's the deal?
Laura3mini
in
CLL Support
3 years ago
Treatment option with del 17 positive but IGHV mutated
I am CLL since 2003 on wait and watch. Now my count has increased to 80000 and platlets fallen to 1 Lakhs. RBC is normal.My spleen is 16.5 cms My FISH report indicates del17 positive but IGHV is mutated. Is my CLL agressive and needs special treatment especially because I am del17 positive . But IGHV
I am CLL since 2003 on wait and watch. Now my count has increased to 80000 and platlets fallen to 1 Lakhs. RBC is normal.My spleen is 16.5 cms My FISH report indicates del17 positive but IGHV is mutated. Is my CLL agressive and needs special treatment especially because I am del17 positive . But IGHV
Ashwas
in
CLL Support
3 years ago
CLL Society COVID-19 guidelines, & Explaining to Family and Friends Why the CDC Guidelines for Those Vaccinated - Do Not Apply to us
Davids Discusses Duvelisib and Venetoclax, an Oral Time-Limited Treatment for Chronic
Lymphocytic
Leukemia
(CLL).
Davids Discusses Duvelisib and Venetoclax, an Oral Time-Limited Treatment for Chronic
Lymphocytic
Leukemia
(CLL).
lankisterguy
Volunteer
in
CLL Support
3 years ago
3rd Covid Vaccine
So I got my letter from Haematology today about the 3rd primary covid vaccine. Moment of excitement, then read through frantically trying to find MPNs or PV on the list of eligible criteria. It wasn't there. Re-read the three page letter a little more frantically and finally found the word hydroxycarbamide
So I got my letter from Haematology today about the 3rd primary covid vaccine. Moment of excitement, then read through frantically trying to find MPNs or PV on the list of eligible criteria. It wasn't there. Re-read the three page letter a little more frantically and finally found the word hydroxycarbamide
MWxxxx
in
MPN Voice
3 years ago
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