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CLL Society ASH 2021 Highlights from Day 2 of ASH 2021! Dr. Brian Koffman gives up updates
ASH 2021 Highlights from Day 2 of ASH 2021! Dr. Brian Koffman gives up updates on the reversible non-covalently binding BTKi (Bruton’s tyrosine kinase inhibitor) pirtobrutinib (formerly LOXO-305), another reversable BTKi known as MK-1026 (formerly ARQ-531), 3-year follow-up data from the Ascend Trial
ASH 2021 Highlights from Day 2 of ASH 2021! Dr. Brian Koffman gives up updates on the reversible non-covalently binding BTKi (Bruton’s tyrosine kinase inhibitor) pirtobrutinib (formerly LOXO-305), another reversable BTKi known as MK-1026 (formerly ARQ-531), 3-year follow-up data from the Ascend Trial
bkoffman
CLL CURE Hero
in
CLL Support
2 years ago
Anyone else stopping RITUXIMAB
Hi everyone I hope ur all well. I am interested to know if anyone has been advised to stop RITUXIMAB infusions? I went for my infusion on Thursday (it was 5 weeks late as I had a third dose of vaccine in between time) My consultant told me patients on ritux who contracted covid had no efficacy. The vaccines
Hi everyone I hope ur all well. I am interested to know if anyone has been advised to stop RITUXIMAB infusions? I went for my infusion on Thursday (it was 5 weeks late as I had a third dose of vaccine in between time) My consultant told me patients on ritux who contracted covid had no efficacy. The vaccines
Maverick77
in
LUPUS UK
2 years ago
Understanding of CD19 levels?
Hi All Well I'm feeling a little miserable after receiving my covid antibody test result with a reading of just 4 u/ml after 3 vaccines. Further more a recent blood test showed very suppressed CD19 levels, I've been researching this online to understand the significance and believe the low levels are
Hi All Well I'm feeling a little miserable after receiving my covid antibody test result with a reading of just 4 u/ml after 3 vaccines. Further more a recent blood test showed very suppressed CD19 levels, I've been researching this online to understand the significance and believe the low levels are
Galaxy2
in
Vasculitis UK
2 years ago
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Uncontrolled RA
Im 63 and I've had uncontrolled RA for 8 years. I've been asked to try Rituximab after other biologics have failed but having read up on it I'm a little hesitant as it definitely sounds the worst for side effects. It seems to me that I'm simply replacing one set of risks and side effects from being
Im 63 and I've had uncontrolled RA for 8 years. I've been asked to try Rituximab after other biologics have failed but having read up on it I'm a little hesitant as it definitely sounds the worst for side effects. It seems to me that I'm simply replacing one set of risks and side effects from being
BernardBear
in
NRAS
2 years ago
GPA relapse advice needed
Good Morning to you all. I was hoping someone who could advice me on GPA Replase. I was diagnosed back in April of this year spent over 2 weeks in hospital and treated with Rituximab and continue on steroids unable to tolerate Azathioprine so spent the summer reducing steroids down from 60 mg to 10mg
Good Morning to you all. I was hoping someone who could advice me on GPA Replase. I was diagnosed back in April of this year spent over 2 weeks in hospital and treated with Rituximab and continue on steroids unable to tolerate Azathioprine so spent the summer reducing steroids down from 60 mg to 10mg
Hidden
in
Vasculitis UK
2 years ago
acquired angioedema
Has anyone been diagnosed with AAE caused by their CLL.? I was diagnosed with CLL in 2008, but the cause of all the swelling attacks I was having was not figured out until 2013. I have been through two 6 month treatments with FCR, the first because the CLL had reached the treatment stage and the second
Has anyone been diagnosed with AAE caused by their CLL.? I was diagnosed with CLL in 2008, but the cause of all the swelling attacks I was having was not figured out until 2013. I have been through two 6 month treatments with FCR, the first because the CLL had reached the treatment stage and the second
hertler13
in
CLL Support
2 years ago
Understanding mechanisms of resistance to Pirtobrutinib in Chronic Lymphocytic Leukaemia
Covalent Bruton Tyrosine Kinase inhibitors (BTKi) like ibrutinib, acalabrutinib and zanubrutinib have completely changed the treatment landscape for CLL. However, a group of patients can develop resistance (most commonly as a result of a BTK C481S mutation) to these effective treatments and require further
Covalent Bruton Tyrosine Kinase inhibitors (BTKi) like ibrutinib, acalabrutinib and zanubrutinib have completely changed the treatment landscape for CLL. However, a group of patients can develop resistance (most commonly as a result of a BTK C481S mutation) to these effective treatments and require further
CLLerinOz
Volunteer
in
CLL Support
2 years ago
Post rituximab drop in immunoglobulins
I had severe platelet and neutrophil levels at diagnosis, and they did not recover until 4 days of high-dose dexamethasone after my eighth rituximab infusion. I am now back in mild neutropenia and my immunoglobulins have dropped below the lower limit of normal. Have othes seen this?
I had severe platelet and neutrophil levels at diagnosis, and they did not recover until 4 days of high-dose dexamethasone after my eighth rituximab infusion. I am now back in mild neutropenia and my immunoglobulins have dropped below the lower limit of normal. Have othes seen this?
timmay111
in
NRAS
2 years ago
Rituximanb and operation.
Any idea how long will I need to wait before I can get a hip replacement.I had Rituximab first and second infusions weeks ago.Just checking is it twelve weeks after second infusion any Information welcome thanks.
Any idea how long will I need to wait before I can get a hip replacement.I had Rituximab first and second infusions weeks ago.Just checking is it twelve weeks after second infusion any Information welcome thanks.
Bella59
in
NRAS
2 years ago
Any advice on shingles misery?
I’ve been diagnosed with oral shingles (and a big thank you to Bellabee for recognising the symptoms and making me go to the doctor). I’m 6 days into aciclover and tegretol. I’m also using alcohol free mouth wash several times a day, but the pain is miserable. Paracetamol barely touches it and I’m so
I’ve been diagnosed with oral shingles (and a big thank you to Bellabee for recognising the symptoms and making me go to the doctor). I’m 6 days into aciclover and tegretol. I’m also using alcohol free mouth wash several times a day, but the pain is miserable. Paracetamol barely touches it and I’m so
Mandy56
in
CLL Support
2 years ago
So fed up
Hi folks I haven't posted in a long while but have been keeping up with reading others. I'm sorry but I really just want to vent as feeling quite low and I suppose angry at the moment. We all know it can take a long while for diagnosis but I genuinely feel if I was listened to I wouldn't be at the stage
Hi folks I haven't posted in a long while but have been keeping up with reading others. I'm sorry but I really just want to vent as feeling quite low and I suppose angry at the moment. We all know it can take a long while for diagnosis but I genuinely feel if I was listened to I wouldn't be at the stage
CarolMcl
in
LUPUS UK
2 years ago
Lloyds Pharmacy Clinical Homecare Tocilizumab delivery 👎
Hi Peeps 😊 If you've read my recent posts, you'll know that I'm changing from Rituximab to Tocilizumab. I was told it was coming from Lloyds Pharmacy Clinical Homecare. Well, what a farce! They are supposed to honour the prescription well within 2 weeks. I tried calling on a number of occasions to
Hi Peeps 😊 If you've read my recent posts, you'll know that I'm changing from Rituximab to Tocilizumab. I was told it was coming from Lloyds Pharmacy Clinical Homecare. Well, what a farce! They are supposed to honour the prescription well within 2 weeks. I tried calling on a number of occasions to
Moomin8
in
NRAS
2 years ago
10 Years With CLL: Two Trials & Lifesaving CAR T-Cell Therapy
I rarely cross post to Patient Power but today there is a story by a fellow CLL patient I have known for many years as DebinOz. She is one of the few I know of with a more aggressive form of CLL than mine. And I think she has more air miles than my 750,000 with United. Len - See: https://patientpower.info
I rarely cross post to Patient Power but today there is a story by a fellow CLL patient I have known for many years as DebinOz. She is one of the few I know of with a more aggressive form of CLL than mine. And I think she has more air miles than my 750,000 with United. Len - See: https://patientpower.info
lankisterguy
Volunteer
in
CLL Support
2 years ago
Immunoglobulins
Hello. My nurse asked me to do an immunoglobulin test among others before my Rituximab infusion. The paper says igm igg and some more and then the latter B. What are they and what do they show? Thanks
Hello. My nurse asked me to do an immunoglobulin test among others before my Rituximab infusion. The paper says igm igg and some more and then the latter B. What are they and what do they show? Thanks
ks1966
in
NRAS
2 years ago
STARTING 4th CYCLE OF NX-2127 TRIAL
Here's an update from my newest clinical trial, Nurex-2127. This first phase is the dose finding part. I started on 300mg, the max amount at the time. Things started off well, but after three weeks, my anc dropped to 1.0, the study requires 1.5 or higher. I found myself off of the study until I got
Here's an update from my newest clinical trial, Nurex-2127. This first phase is the dose finding part. I started on 300mg, the max amount at the time. Things started off well, but after three weeks, my anc dropped to 1.0, the study requires 1.5 or higher. I found myself off of the study until I got
steve5441
in
CLL Support
2 years ago
LLS (USA) Answers to COVID-19 questions based on trials with CLL and NHL patients in USA
The LLS clinical trials have yielded excellent data regarding the experience of 7000 Lymphoma patients. Here are links to the most recent 2 Videos. https://youtu.be/4WSXqs73Wjk ASK AN EXPERT: EPISODE 6 (11.12.2021) Dr. Larry Saltzman, Executive Research Director at LLS, answers the following questions
The LLS clinical trials have yielded excellent data regarding the experience of 7000 Lymphoma patients. Here are links to the most recent 2 Videos. https://youtu.be/4WSXqs73Wjk ASK AN EXPERT: EPISODE 6 (11.12.2021) Dr. Larry Saltzman, Executive Research Director at LLS, answers the following questions
lankisterguy
Volunteer
in
CLL Support
3 years ago
Rituximab infection
Hello. Again. I’m due for my Rituximab infusion on December 1st. My Respiratory Doctor wrote to me saying there are “some infective changes” in my lower left lung. Is it a good idea to delay the infusion? I took a coarse of antibiotics last month. Any thoughts please? Thanks
Hello. Again. I’m due for my Rituximab infusion on December 1st. My Respiratory Doctor wrote to me saying there are “some infective changes” in my lower left lung. Is it a good idea to delay the infusion? I took a coarse of antibiotics last month. Any thoughts please? Thanks
ks1966
in
NRAS
3 years ago
Any other parents of very young children here? Searching for hope.
Hello everyone, I’m new to the board and wanted to introduce myself. I’m the mother of a 5 year old boy on the long road of recovery from antibody-negative autoimmune encephalitis. A quick summary of our case history: this summer my husband and I started noticing our son’s increasingly odd behavior
Hello everyone, I’m new to the board and wanted to introduce myself. I’m the mother of a 5 year old boy on the long road of recovery from antibody-negative autoimmune encephalitis. A quick summary of our case history: this summer my husband and I started noticing our son’s increasingly odd behavior
Harper1
in
Encephalitis Society
3 years ago
End of the 7-year FLAIR trial in the FCR arm
Well, I’ve made it to the end of the 7-year FLAIR trial in the FCR chemoimmunotherapy arm (treated in 2014/2015) I went to my last review in December at the Churchill hospital in Oxford with a somewhat feeling of dread that I’m about to fall off the end of the conveyor so to speak. The Haematology is
Well, I’ve made it to the end of the 7-year FLAIR trial in the FCR chemoimmunotherapy arm (treated in 2014/2015) I went to my last review in December at the Churchill hospital in Oxford with a somewhat feeling of dread that I’m about to fall off the end of the conveyor so to speak. The Haematology is
Ernest2
in
CLL Support
2 years ago
Rituximab one vs two 1000g dose
Hello everyone. I saw my pleasant rheumys nurse today. After doing her check up she decided to give me one dose of Rituximab instead of 2 doses this round. Any thoughts as to why she did this ? And has this happened to any one? Many thanks.
Hello everyone. I saw my pleasant rheumys nurse today. After doing her check up she decided to give me one dose of Rituximab instead of 2 doses this round. Any thoughts as to why she did this ? And has this happened to any one? Many thanks.
ks1966
in
NRAS
3 years ago
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