Breakthrough CLL Treatments: The Latest Advances in Chronic Lymphocytic Leukemia | The Patient Story
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- Опубліковано 1 чер 2024
- Patient advocate Andrew Schorr has been living with chronic lymphocytic leukemia for 26 years.
In this conversation, he talks with hematologist-oncologist Dr. Nitin Jain from the MD Anderson Cancer Center who specializes in patients with CLL and ALL.
They discuss the latest treatment and developments in CLL coming out of ASH, the American Society of Hematology, which took place December 2022 including the latest treatments and research in chronic lymphocytic leukemia.
Full story and transcript → www.thepatientstory.com/medic...
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Contents of this Video:
00:00 - Intro
01:11 - How to choose the right drug for the right patient
05:55 - Ibrutinib
06:43 - Is the standard still "watch and wait" for CLL patients?
09:03 - Ibrutinib and venetoclax for the first-line treatment of CLL
10:34 - The importance of getting an infusion vs. oral medications?
12:29 - What is the advantage of a third generation BTK inhibitor?
14:03 - New data on Richter's transformation
18:32 - CAR T-cell therapy
#CLL #thepatientstory #cllsm #sll #chroniclymphocyticleukemia #leukemia #cancerstories #cancerpatient #cancersurvivor#bloodcancer #cancertreatments #bispecifics
Andrew, thanks for the work you perform to aid other people with CLL or people who are closely related to CLL patients. I am a Clinical Laboratory Scientist. I work on a microscope reading slides and looking for pathological changes in the patient's rbc or wbc. My wife is just now being worked up for leukemia. We do not have a bone marrow performed yet. Monday we find out what the flow cytometry reveals. Your interview with Dr Jain was illuminating and so perfect for me. I have seen thousands of blood cancers on slides over the 40 plus years i have worked in the field. The information i gleened in your presentation has calmed me down signifantly. I see that if she is diagnosed with CLL there is hope for a fairly normal lifestyle for her. God bless the Researchers, Clinicians, and cancer workers...
Hello everyone. My 65 year old mother was just diagnosed with CLL. I'm trying to learn as much as I can as fast as I can so I may be able to help her. We are in Ontario for anyone wondering. My heart goes out to all those with CLL I wish you all good health & feeling well, my mom has low energy & has broken a couple bones before being diagnosed.
Thank you so much for sharing that with us. We are so sorry to hear about your mother. We are hosting a CLL live discussion with a CLL specialist next Wednesday (May 3). We'd love for you to join us. Here's a link to save your seat and submit questions: us06web.zoom.us/webinar/register/6616825400465/WN_2BZkHF7_SiWd_FkAKtQXJQ.
You can also subscribe to our newsletter for the latest information about CLL. Wishing you and your mother well.
sorry to here that, but she might live a long time, because it is chronic and NOT acute . i have had 3 infusions at MD ANDERSON IN HOUSTON TX, the doctors speak highly of this new drug. they say in time cancer will be conquered . tell your mom everything is going to be alright . the doctors will evaluate her stage and symptoms and will treat her according to that. with god and the new breakthroughs in science, we have hope.
@@ThePatientStory wow, this is just what I needed I will definitely attend online & let her know about it. Thank-you so much for taking the time to let me know I really appreciate you.
@@jodyguilbeaux8225 this brings me immense happiness knowing that there's a chance. I do not know much about cancer yet but am learning thanks to people like you who take the time to share their knowledge.
I really appreciate you stopping & taking your time thank-you
another wonderful update Andrew! Thank you from all of us CLL'ers. Hope can indeed be the best medicine of all
I have atypical CLL with multiple paraneoplastic syndromes starting with a massive Pulmonary Embolism with cor pulmonale in 2108 spent a week in the ICU. Most of my paraneoplastic syndromes have been neurologic. I have found that oncologists seem to know very little about paraneoplastic syndromes and just ignore my symptoms. I never get any answers and have to research everything myself. I delt with almost a year of appendicitis level lower abdominal pain with no help or answers. It seemed to be a vascular type pain which fit angioedema in my colon which is occassionaly seen with CLL. I have seen peripheral angiedema in the past and the pain was identical to what my patients complained of. I am trying to figure out how to get oncologists to listen, or find an oncologist who knows atypical CLL. I was treated in the past with Ibrutinib which made me much sicker for 30K$ a month. I was finally treated with Rituxan that did help and supposed ti start Venetoclax afterwards which I had an allergic reaction too. My days vay dramatically some days I feel relatively OK others I can't get out of bed and fall a lot from balance and coordination problems that alao come and go!
Thank you for this knowledgeable interview , I was diagnosed last month my haematologist decided that I need treatment right away away because of the deletions in 17p tp53 unmutated , I had no symptoms except a lympjnode in my groin, I already started treatment with ibrutinib 420mg , 2 weeks now no side effect , however im so worried if starting medication was a right decision as all articles I read and all interviews explain that treatment shouldn't start if there are no symptoms, in my country there are no CLL specialist can you advice
This is an EXCELLENT video. Plain language that I can understand. I completed my 12 months Obinutuzumab-Venclexta CLL treatment regimen 14 months ago at MD Anderson-San Antonio. I now feel that I am much better informed regarding the treatment that I had and, more importantly, what the future may have in store for CLL therapy. Thanks!!
So glad this was helpful! It's been awhile but would love to get in touch with you - if you're interested, please email connect@thepatientstory.com Thank you!
I've had cll for 7 years, I'm 47 years old with out insurance. Thank you for the info.
I am also a cll sufferer. Please share how do you live with cll. What diet should be taken.
@@mdrahamatullahmd4574 I work hard, eat normal food, and I don't worry about it! It seems to be working fine.
This video did a great job explaining and summarizing the available treatments. Thank you.
How about cost? Calquence acalabrutinib costs $25,000 for a 30 day supply. (no...thats not a typo... $25k per month)
So much for Obamacare.
What wbc count numbers is the drug recommended……?
Mine has returned after getting venetoclax in a clinical 2016. Going back to Houston in May for cat scan, bone marrow and of course blood tests. Feel good but lymph nodes are hurting.
@Eddylauterback1312 How are you doing now? Did you figure out the next steps with your care team? Feel free to reach out to us directly: alexis@thepatientstory.com, stephanie@thepatientstory.com. Thank you!
Great update. Thanks. I have CLL and treated 5 years ago and now I have some showing up on CT SCAN. What Great news or potential news.
What do u mean by “some showing up”?
@@lucylu9792 relapsed
For all these choices of treatments or formulas of treatment how does the patient who doesn't understand the desease or sickness they have as clearly as these men do get the right treatment. How does the patient (me) know if what his doctors has all these tools to give the patient the best most up to date options available?
I am a cll patient. I am suffering since one year. My bodyweight is decreasing. Give suggestion.
how effeciently are these treatments available in countries like india
Andrew, you are an inspiration thanks for all you have done. May God Himself heal you completely. Thank you, Jesus, for your power of healing that surpasses all understanding. Psalm 103, Isaiah 53:5.