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Captivate Trial MRD status
I've been part of the CAPTIVATE trial since 2018. My treatment ended in May 2019....Ibrutinib for 12 months and Venetoclax for 9. I just received several test results including Flow Citometry and I am still MRD negative after 2 years. This trial was simply awesome and a life saver. I was originally
I've been part of the CAPTIVATE trial since 2018. My treatment ended in May 2019....Ibrutinib for 12 months and Venetoclax for 9. I just received several test results including Flow Citometry and I am still MRD negative after 2 years. This trial was simply awesome and a life saver. I was originally
lamboman
in
CLL Support
3 years ago
Joint Committee on Vaccination and Immunisation (JCVI) advice on third primary dose vaccination
Individuals with primary or acquired immunodeficiency states at the time of vaccination due to conditions including: acute and chronic leukaemias, and clinically aggressive
lymphomas
(including Hodgkin’s lymphoma) who were under treatment or within 12 months of achieving cure individuals under follow
Individuals with primary or acquired immunodeficiency states at the time of vaccination due to conditions including: acute and chronic leukaemias, and clinically aggressive
lymphomas
(including Hodgkin’s lymphoma) who were under treatment or within 12 months of achieving cure individuals under follow
crashdoll
in
Lung Conditions Community Forum
3 years ago
Is humira safe to take? Re potential lymphoma and leukemia?
Hi all. I am very new to this platform but so grateful to have a place to ask some difficult questions to people who may understand. I have just started humira after reacting badly to mabthera. I have also previously been on methotrexate, azaoress, nivaquin abd high dose steroids to name a few. I have
Hi all. I am very new to this platform but so grateful to have a place to ask some difficult questions to people who may understand. I have just started humira after reacting badly to mabthera. I have also previously been on methotrexate, azaoress, nivaquin abd high dose steroids to name a few. I have
lee2021
in
LUPUS UK
3 years ago
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Lymphoma Questions
Hi All, Sorry to post on such a crappy topic. So this study came out and it kind of scared me a bit as I have a focus score of 8 from my biopsy at diagnosis which is quite high. The study is here: https://www.sciencedirect.com/science/article/abs/pii/S0896841121000561 It seems to suggest that the higher
Hi All, Sorry to post on such a crappy topic. So this study came out and it kind of scared me a bit as I have a focus score of 8 from my biopsy at diagnosis which is quite high. The study is here: https://www.sciencedirect.com/science/article/abs/pii/S0896841121000561 It seems to suggest that the higher
Insomniacette
in
LUPUS UK
3 years ago
I have had both doses of the Pfizer vaccine, while they applauded me after I got my 2nd dose, 90 days later I found that I have no immunity!
I took Ibrutinib prior to January 20 when it gave me AFib and a few other problems, then stated Venetoclax in July of 2020, and in August started the first of six doses of Rituxan. It would seem that Rituxan is the main culprit, as in my research I found that no immunity was created in cases which
I took Ibrutinib prior to January 20 when it gave me AFib and a few other problems, then stated Venetoclax in July of 2020, and in August started the first of six doses of Rituxan. It would seem that Rituxan is the main culprit, as in my research I found that no immunity was created in cases which
KevinCLLITP
in
CLL Support
3 years ago
How Good is the Level of Scientific Evidence Underlying the National Comprehensive Cancer Network Clinical Practice (NCCN) CLL Guidelines?
Have a look through just this one guideline, for just one of around 200 leukaemias and
lymphomas
(CLL is kind of both). Now appreciate that a general oncologist needs to keep across updates in many different blood cancer guidelines, along with similar guidelines for solid cancers.
Have a look through just this one guideline, for just one of around 200 leukaemias and
lymphomas
(CLL is kind of both). Now appreciate that a general oncologist needs to keep across updates in many different blood cancer guidelines, along with similar guidelines for solid cancers.
AussieNeil
Partner
in
CLL Support
3 years ago
Pies!
Whilst I was moaning on about all the restaurants that have given up on GF items on their menus I was thinking too of brighter things. Pies! I love a pork pie and cornish pasty, steak pie. I could go on but you get the picture. I have found an online outlet that sells the lot, all delicious and I want
Whilst I was moaning on about all the restaurants that have given up on GF items on their menus I was thinking too of brighter things. Pies! I love a pork pie and cornish pasty, steak pie. I could go on but you get the picture. I have found an online outlet that sells the lot, all delicious and I want
Kim1950
in
Gluten Free Guerrillas
3 years ago
Doctor wants to start Venetoclax today but recent blood work shows evidence of AIHA but Doctor still says start Ven
shouldn't AIHA be treated first? hemoglobin dropping weekly down from 14.7 2 months ago now 10.7 Haptoglobin less than 31 LDH almost 700 Doctor says still start Venclexta tomorrow but why not hold off until AIHA is controlled with steroids or Rituxan? I think the Rituxan will put him in control of
shouldn't AIHA be treated first? hemoglobin dropping weekly down from 14.7 2 months ago now 10.7 Haptoglobin less than 31 LDH almost 700 Doctor says still start Venclexta tomorrow but why not hold off until AIHA is controlled with steroids or Rituxan? I think the Rituxan will put him in control of
Palmetto
in
CLL Support
3 years ago
ANXIETY SUFFERER ALONG WITH LUPUS
Hi All, is anyone suffering with Anxiety?(that's probably a dumb question.most of us have it. I has diagnosed late in life about five years ago. My problem is that I suffer ANXIETY big time. Which I can't sleep without an Aid.Even before I has diagnosed with Panniculitus. I didn't't sleep without a
Hi All, is anyone suffering with Anxiety?(that's probably a dumb question.most of us have it. I has diagnosed late in life about five years ago. My problem is that I suffer ANXIETY big time. Which I can't sleep without an Aid.Even before I has diagnosed with Panniculitus. I didn't't sleep without a
Goinglong10
in
LUPUS UK
3 years ago
Stem cell transplant saved me
I had stage 4 started with rituxin and bendamustine chemo relapsed had RChop it didn’t work had stem cell transplant have been in remission for 7 years do it!
I had stage 4 started with rituxin and bendamustine chemo relapsed had RChop it didn’t work had stem cell transplant have been in remission for 7 years do it!
patricih
in
Non Hodgkin's Lymphoma Friends
3 years ago
Auto Stem Cell transplant?
Hi, Curious to know if anyone out there has had R-chop, then relapsed and the next line of treatment recommended was SCT? I've been battling Marginal Zone lymphoma (2016), transformed to DLBCL (2018) and now it's back again. The auto process sounds very scary (dangerous), and with a 30-50% success rate
Hi, Curious to know if anyone out there has had R-chop, then relapsed and the next line of treatment recommended was SCT? I've been battling Marginal Zone lymphoma (2016), transformed to DLBCL (2018) and now it's back again. The auto process sounds very scary (dangerous), and with a 30-50% success rate
skinkade
in
Non Hodgkin's Lymphoma Friends
3 years ago
"Did catching Covid-19 help these patients fight cancer?"
Unfortunately the source of this information is not very scientific (Daily Mail), but one described case seems to partially base on a credible source (see PDF link on the page below): https://onlinelibrary.wiley.com/doi/10.1111/bjh.17116 Don't try this at home! Wait for thousands of more reports showing
Unfortunately the source of this information is not very scientific (Daily Mail), but one described case seems to partially base on a credible source (see PDF link on the page below): https://onlinelibrary.wiley.com/doi/10.1111/bjh.17116 Don't try this at home! Wait for thousands of more reports showing
mantana
in
CLL Support
3 years ago
Rasburicase/Allopurinol
Hi, I am in the first week of ramp up of Venetoclax. I was hospitalized for 2 days for the first dose. I had Rasburicase IV, but I am not sure if I should be taking Allopurinol daily at home. I should have asked, too stressed. I am at high risk of TLS, but very little effect on large node yet. Thanks
Hi, I am in the first week of ramp up of Venetoclax. I was hospitalized for 2 days for the first dose. I had Rasburicase IV, but I am not sure if I should be taking Allopurinol daily at home. I should have asked, too stressed. I am at high risk of TLS, but very little effect on large node yet. Thanks
Hidden
in
CLL Support
4 years ago
THE USE OF DAPSONE FOR SUBCUTANEOUS ISSUES
Has anyone else been prescribed the Medication DAPSONE? I initially was prescribed the usual suspect (meds)when I was first diagnosed with Panniculitus in 2018. All of them made me deathly ill. I ran across articles for the drug Dapsone and asked my Rumy if I could take it. She prescribed it for me
Has anyone else been prescribed the Medication DAPSONE? I initially was prescribed the usual suspect (meds)when I was first diagnosed with Panniculitus in 2018. All of them made me deathly ill. I ran across articles for the drug Dapsone and asked my Rumy if I could take it. She prescribed it for me
Goinglong10
in
LUPUS UK
4 years ago
First line treatment failure. Transformation.
My father has been on the combination obinutuzamb/venetoclax first line treatment for CLL with aggressive features since March 2020, and had his one year CT scan yesterday. We were so hopeful that Plan 1 would be promising, yet the results are very troubling. -CT Results: 1. There is new perirenal
My father has been on the combination obinutuzamb/venetoclax first line treatment for CLL with aggressive features since March 2020, and had his one year CT scan yesterday. We were so hopeful that Plan 1 would be promising, yet the results are very troubling. -CT Results: 1. There is new perirenal
Phs2385
in
CLL Support
4 years ago
Hope you are all well.I was diagnosed with Waldenstrom's Macroglobumiea, Lymphoplasmacytic Lymphoma in November 2020.I have been having
Hope you are all well. I was diagnosed with Waldenstrom's Macroglobumiea, Lymphoplasmacytic Lymphoma in November 2020. I have been having regular blood tests which has shown that the cancerous cells have not increased and the haemoglobin levels are low but stable. I do not have any classic symptoms as
Hope you are all well. I was diagnosed with Waldenstrom's Macroglobumiea, Lymphoplasmacytic Lymphoma in November 2020. I have been having regular blood tests which has shown that the cancerous cells have not increased and the haemoglobin levels are low but stable. I do not have any classic symptoms as
bridgeoverriverkwai
in
Non Hodgkin's Lymphoma Friends
4 years ago
Explosion of Data Come From Innovative Combos in CLL The progress made with novel combination regimens is unprecedented
Video recaps of significant papers presented at 25th Annual International Congress on Hematologic Malignancies: Focus on Leukemias,
Lymphomas
, and Myeloma https://view.email.onclive.com/?
Video recaps of significant papers presented at 25th Annual International Congress on Hematologic Malignancies: Focus on Leukemias,
Lymphomas
, and Myeloma https://view.email.onclive.com/?
lankisterguy
Volunteer
in
CLL Support
4 years ago
Covid Vaccine
Hi all hope you are all keeping safe a question i need some light on has anyone had the Covid vaccine with having a low platelet count (Thrombocytopenia )mine being 50 i have been hearing a lot who have had the vaccine and its made Platelet count drop i really dont want mine to drop any lower and
Hi all hope you are all keeping safe a question i need some light on has anyone had the Covid vaccine with having a low platelet count (Thrombocytopenia )mine being 50 i have been hearing a lot who have had the vaccine and its made Platelet count drop i really dont want mine to drop any lower and
cavi
in
PBC Foundation
4 years ago
Ginger while on Warfarin?
I read a recent article about the positive effect of ginger on APS and Lupus in mice. Has anyone taken ginger supplements or ginger tea while on Warfarin? I know that ginger can interact with Warfarin but I am wondering if anyone has tried both at the same time. Thank you!
I read a recent article about the positive effect of ginger on APS and Lupus in mice. Has anyone taken ginger supplements or ginger tea while on Warfarin? I know that ginger can interact with Warfarin but I am wondering if anyone has tried both at the same time. Thank you!
Or81
in
Hughes Syndrome APS Forum
4 years ago
Hemoglobin
Dx in 2013 and have been treated with Ibrutinib then Venetoclax. Overall I have done well but over the last year my Hg has begun a slow trend of decrease, now in 11s. I realize that is not at all dangerous but I do get winded with any vigorous activity or when I travel to the mountains. I take the B
Dx in 2013 and have been treated with Ibrutinib then Venetoclax. Overall I have done well but over the last year my Hg has begun a slow trend of decrease, now in 11s. I realize that is not at all dangerous but I do get winded with any vigorous activity or when I travel to the mountains. I take the B
Fant1924
in
CLL Support
4 years ago
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