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Experiences with
Small lymphocytic lymphoma (SLL)
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Bone Marrow at 65% after 6 months Imbruvica and ^ months of Gazyva
My question is centered on expectations and bone marrow results. What is the expected bone marrow cellularity after 8 months of Imbruvica and 6 months of Gazyva infusions? My bone bone marrow cellularity before initial treatment were at 95% and after now are at 65%. I was hoping for more of a obliteration
My question is centered on expectations and bone marrow results. What is the expected bone marrow cellularity after 8 months of Imbruvica and 6 months of Gazyva infusions? My bone bone marrow cellularity before initial treatment were at 95% and after now are at 65%. I was hoping for more of a obliteration
alijoel
in
CLL Support
5 years ago
Night sweats ONION SCENT
My wife has noted that my night sweats come with a strong onion scent in the air while I sleep ..I detected it on my clothes if I work and get a lather going I have smelled it also this is a new one on me I shower 2 times a day and am embarrassed by the New aroma I hope
My wife has noted that my night sweats come with a strong onion scent in the air while I sleep ..I detected it on my clothes if I work and get a lather going I have smelled it also this is a new one on me I shower 2 times a day and am embarrassed by the New aroma I hope
lacroixx1
in
CLL Support
5 years ago
My CLL adventure
In Vietnam 1965...now diagnosed with CLL. My local VA Dr is a terrific help... can’t say enough good about Dr Yutz. Now dealing with the VA for disability compensation for my stage 4. Undergoing immunotherapy that is helping. Good luck all you good people! Keep punching!!
In Vietnam 1965...now diagnosed with CLL. My local VA Dr is a terrific help... can’t say enough good about Dr Yutz. Now dealing with the VA for disability compensation for my stage 4. Undergoing immunotherapy that is helping. Good luck all you good people! Keep punching!!
JimboW
in
CLL Support
5 years ago
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Mantle cell lymphoma
is anyone coping with Mantle cell lymphoma? I'm trying to track down some Lactobacillus Johnsonii which has been said to be helpful
is anyone coping with Mantle cell lymphoma? I'm trying to track down some Lactobacillus Johnsonii which has been said to be helpful
1susiE
in
CLL Support
5 years ago
Experience with Clinical Trial
I am about 2 months into a trial starting with debulking with bitimustin and immunotherapy, followed eventually by Venetoclax for about a year. I had several internal lymph nodes that were quite enlarged. I had a CT scan a few days ago and the good news is the scan showed no more enlarged nodes. However
I am about 2 months into a trial starting with debulking with bitimustin and immunotherapy, followed eventually by Venetoclax for about a year. I had several internal lymph nodes that were quite enlarged. I had a CT scan a few days ago and the good news is the scan showed no more enlarged nodes. However
Elam
in
CLL Support
5 years ago
Jakavi a Janus kinase inhibitor ; does anyone know about this Med for the treatment of CLL
I met someone in the waiting room at MDA and he told me about this medication . He has CLL was Watch a wait a couple of years ago 2011 on this since 2013. He is on a clinical trial. It’s approved for myelofibrosis, but now being used for CLL.
I met someone in the waiting room at MDA and he told me about this medication . He has CLL was Watch a wait a couple of years ago 2011 on this since 2013. He is on a clinical trial. It’s approved for myelofibrosis, but now being used for CLL.
LovecuresCLL
in
CLL Support
5 years ago
YABTKi or Yet Another BTK inhibitor - the A to Z list of Bruton's Tyrosine Kinase Inhibitors for CLL following Ibrutinib's success
https://www.businesswire.com/news/home/20201227005017/en/InnoCare-Announces-the-Approval-of-Orelabrutinib-in-China-for-Patients-with-RelapsedRefractory-Chronic-
Lymphocytic
-Leukemia-or-
Small
-
Lymphocytic
-
Lymphoma
-and-RelapsedRefractory-Mantle-Cell-Lymphoma Updated Phase 2 study report from ASH2020 https
https://www.businesswire.com/news/home/20201227005017/en/InnoCare-Announces-the-Approval-of-Orelabrutinib-in-China-for-Patients-with-RelapsedRefractory-Chronic-
Lymphocytic
-Leukemia-or-
Small
-
Lymphocytic
-
Lymphoma
-and-RelapsedRefractory-Mantle-Cell-Lymphoma Updated Phase 2 study report from ASH2020 https
AussieNeil
Partner
in
CLL Support
5 years ago
High rate of durable complete remission in follicular lymphoma after CD19 CAR-T cell immunotherapy
Key Points * CD19 CAR-T cell immunotherapy results in high CR rates in FL with or without transformation. * Sustained remissions were observed in all patients with FL without transformation achieving CR. Source: http://www.bloodjournal.org/content/134/7/636
Key Points * CD19 CAR-T cell immunotherapy results in high CR rates in FL with or without transformation. * Sustained remissions were observed in all patients with FL without transformation achieving CR. Source: http://www.bloodjournal.org/content/134/7/636
wmay13241
in
Non Hodgkin's Lymphoma Friends
5 years ago
Are you due to receive a biologic therapy in the next two weeks? Would you be happy to appear on TV?
Hi everyone, We've been contacted by a producer who is working on a Channel 4 programme for the documentary series, Dispatches. The programme is investigating how a potential US-UK trade deal could affect the availability of biologic treatments on the NHS. As part of the show, they would like to feature
Hi everyone, We've been contacted by a producer who is working on a Channel 4 programme for the documentary series, Dispatches. The programme is investigating how a potential US-UK trade deal could affect the availability of biologic treatments on the NHS. As part of the show, they would like to feature
Paul_Howard
LUPUS UK
in
LUPUS UK
5 years ago
Oncoplex Cancer Gene Panel test
I just got the results of 2 new tests back. One is called an Oncoplex Cancer Gene Panel and the results said : “The sample tested is positive for copy loss of portions of chromosome 5 (includes CD74 and RPS14) and a low level variant in ASLX1 “ I trie to look this up, but was confused by the article
I just got the results of 2 new tests back. One is called an Oncoplex Cancer Gene Panel and the results said : “The sample tested is positive for copy loss of portions of chromosome 5 (includes CD74 and RPS14) and a low level variant in ASLX1 “ I trie to look this up, but was confused by the article
t2aa
in
CLL Support
5 years ago
Ibrutinib Shown to Cross the Blood-Brain Barrier in CNS Lymphoma
CNS CLL is very rare but this is good news for those unfortunate to have it. At 560mg it's a higher dose than CLL patients would normally have but necessary to get a good concentration in the CSF. More information here: https://www.cancertherapyadvisor.com/home/cancer-topics/lymphoma/cns-lymphoma-ibrutinib-shown-to-cross-blood-brain-barrier
CNS CLL is very rare but this is good news for those unfortunate to have it. At 560mg it's a higher dose than CLL patients would normally have but necessary to get a good concentration in the CSF. More information here: https://www.cancertherapyadvisor.com/home/cancer-topics/lymphoma/cns-lymphoma-ibrutinib-shown-to-cross-blood-brain-barrier
Jm954
Administrator
in
CLL Support
5 years ago
Imbruvica follow-up
Hi there, I’m a member for almost 1 year already of this great community, so far just reading about experiences and trying to keep positive about my husband’s evolution, diagnosed in June 2017 with Small B Mantle Cell Non Hodgkin Lymphoma. Since September 2018 on Imbruvica, after RCHOP and Radiotherapy
Hi there, I’m a member for almost 1 year already of this great community, so far just reading about experiences and trying to keep positive about my husband’s evolution, diagnosed in June 2017 with Small B Mantle Cell Non Hodgkin Lymphoma. Since September 2018 on Imbruvica, after RCHOP and Radiotherapy
AdrianNS
in
Non Hodgkin's Lymphoma Friends
5 years ago
CLL, Spleen Recovery+recommendations
Hi All, I was hoping to draw on your knowledge, wisdom and experience in dealing with CLL. I was diagnosed in 7/2008 and for almost 11 years was doing quite well but 3 months ago my spleen started to get enlarged, wbc were 76K and swollen lymph nodes to say the least. I had my first dose of Gazyva or
Hi All, I was hoping to draw on your knowledge, wisdom and experience in dealing with CLL. I was diagnosed in 7/2008 and for almost 11 years was doing quite well but 3 months ago my spleen started to get enlarged, wbc were 76K and swollen lymph nodes to say the least. I had my first dose of Gazyva or
SCE2AUX
in
CLL Support
5 years ago
My search for the perfect anti lymphoma diet
About one year ago I discovered this wonderful site. I had been diagnosed with Mantle cell lymphoma in July 2015 and had R Chop and a stem cell transplant. One year ago I had just started a gluten free and dairy free diet and I felt great. I suggested that anyone who had lymphoma and an autoimmune
About one year ago I discovered this wonderful site. I had been diagnosed with Mantle cell lymphoma in July 2015 and had R Chop and a stem cell transplant. One year ago I had just started a gluten free and dairy free diet and I felt great. I suggested that anyone who had lymphoma and an autoimmune
Maltipoo
in
Non Hodgkin's Lymphoma Friends
5 years ago
CT scan results after 3 cycles BR
Hello all, My dad (12 trisomy and unmutated) has finished his 3rd BR cycle. The CT scan shows a reduction of the lymph nodes by 50%-60% (the biggest lymph node was 15 cm in his belly). The hematologist was happy with the results. What do you guys think about the results? We have 3 rounds left, is complete
Hello all, My dad (12 trisomy and unmutated) has finished his 3rd BR cycle. The CT scan shows a reduction of the lymph nodes by 50%-60% (the biggest lymph node was 15 cm in his belly). The hematologist was happy with the results. What do you guys think about the results? We have 3 rounds left, is complete
TOFK
in
CLL Support
5 years ago
Marginal zone lymphoma Facebook support group
https://www.facebook.com/groups/1734968436810226/?ref=share Hi, Hope you don’t mind my sharing a link to the marginal zone lymphoma Facebook site for the members on this site who have been diagnosed with a combo of CLL and mzl or mzl. This is a rarer lymphoma with much less research done so it is
https://www.facebook.com/groups/1734968436810226/?ref=share Hi, Hope you don’t mind my sharing a link to the marginal zone lymphoma Facebook site for the members on this site who have been diagnosed with a combo of CLL and mzl or mzl. This is a rarer lymphoma with much less research done so it is
Judyanne
in
CLL Support
5 years ago
ATTENTION LYMPHOMA PATIENTS, CAREGIVERS, AND HEALTHCARE PROFESSIONALS - NATIONAL LYMPHOMA PATIENT CONFERENCE
Lymphoma Canada is pleased to be hosting its 3rd Annual National Conference for patients, caregivers, family members, friends and healthcare professionals. Saturday, September 21, 2019 Hilton Toronto 145 Richmond St. West, Toronto, ON M5H 2L2 Patient and Caregiver Rate: $35 Breakfast, lunch and
Lymphoma Canada is pleased to be hosting its 3rd Annual National Conference for patients, caregivers, family members, friends and healthcare professionals. Saturday, September 21, 2019 Hilton Toronto 145 Richmond St. West, Toronto, ON M5H 2L2 Patient and Caregiver Rate: $35 Breakfast, lunch and
LCAdmin
Lymphoma Canada
in
Lymphoma Canada
5 years ago
18 month Follow up results with Ibrutinib/Venetoclax clinical trial
I have been for 18 months in the clinical trial for fixed duration of the phase 2 study of the combination of Ibrutinib plus Venetoclax for treatment naive patients. I became MRD negative after 8 months on the drugs and just got the results of my 3rd bone marrow biopsy: I am still MRD negative!!!
I have been for 18 months in the clinical trial for fixed duration of the phase 2 study of the combination of Ibrutinib plus Venetoclax for treatment naive patients. I became MRD negative after 8 months on the drugs and just got the results of my 3rd bone marrow biopsy: I am still MRD negative!!!
lamboman
in
CLL Support
5 years ago
CT Scan too close to BR Chemo date
So my Oncologist's office dropped the ball where I was to have a CT scan before my 4th BR chemo treatment. 3 weeks after the last treatment and just before the next BR treatment. So as it is the CT is scheduled for 3 days after the BR treatments. My question is whether the contrast material will be affected
So my Oncologist's office dropped the ball where I was to have a CT scan before my 4th BR chemo treatment. 3 weeks after the last treatment and just before the next BR treatment. So as it is the CT is scheduled for 3 days after the BR treatments. My question is whether the contrast material will be affected
DDay2012
in
Non Hodgkin's Lymphoma Friends
5 years ago
Relapsed after 40 months in remission
Several days ago a CT/PET detected lymphoma progression wife (72) who was in remission since her CAR-T infusion in March 2016. Monday she will get a lymph node biopsy to see whether her follicular lymphoma has transformed into something else. Any thoughts on the next treatment?
Several days ago a CT/PET detected lymphoma progression wife (72) who was in remission since her CAR-T infusion in March 2016. Monday she will get a lymph node biopsy to see whether her follicular lymphoma has transformed into something else. Any thoughts on the next treatment?
wmay13241
in
CLL Support
5 years ago
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