Doctor Undergoes CAR T-Cell Therapy Clinical Trial (Non-Hodgkin Lymphoma) | Robyn’s Story (3 of 3)
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- Опубліковано 31 тра 2024
- After two lines of therapy, Robyn, a radiologist, found herself back in need of treatment when relapse #2 hit nine months after a stem cell transplant.
In this final part of our conversation, Robyn shares how she enrolled in a clinical trial for CAR T-cell therapy, and the incredible response.
Thank you for sharing your story, Robyn!
Full story & transcript → www.thepatientstory.com/cance...
Series Videos:
1) From Doctor to Patient: How I Got Diagnosed with Cancer: • From Doctor to Patient...
2) Cancer Relapse: Chemo, Radiation & Stem Cell Transplant: • Cancer Relapse: Chemo,...
3) Doctor Undergoes CAR T-Cell Therapy Clinical Trial: This Video
The interview has only been edited for clarity.
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Contents of this video:
00:00 - Intro
01:04 - The 2nd relapse
07:20 - Guidance for people who are trying to navigate clinicaltrials.gov
08:27 - Process of going through the clinical trial paperwork
09:51 - Paying to be a part of a clinical trial
15:47 - What were the other options other than CAR T?
18:24 - CAR T-cell therapy FAQs
20:38 - Finding mental support to get through treatment
22:27 - Being part of science and research
23:11 - How has being a patient shifted your perspective as a physician?
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#nonhodgkinlymphoma #cancerrelapse #chemotherapy #CarTcelltherapy #lymphoma #dlbcl #LLS #thepatientstory #patientstories #cancerstories #cancerpatient #cancersurvivor
Have you considered or gone through CAR T-cell therapy? We’d love to hear from you 👇
Currently I have a pet scan on Tuesday…. But with my last 1 they believe I’m also relapsing and Car-T was what my doctor recommended…. I also had a stem cell transplant in January (3 days after my birthday) so if this is in my future I’m looking forward to it.
@@MonsterMovementTV 🥰🙏👍
Can you jump right into Car T instead of chemo or stem?
CAR-T Therapy or KYMRIAH is extremely expensive. It costs upwards of $500,000. I find it abhorrent what Novartis did. In 2012, the University of Pennsylvania's Perelman School of Medicine developed Kymriah, a CAR-T cell therapy that is used to treat B-cell acute lymphoblastic leukemia (ALL) and large B-cell lymphoma (LBCL). In 2017, Novartis acquired the exclusive global rights to Kymriah for $250 million. The R&D is done at the UPEN and multiple times lower then dollar spent on new R&D.
Yes I had the Harvest last week and hopefully getting my Car-T Cell's back next month 🤞
Wow Robyn a lot to go through. I had stage 4 Lymphoma Large B cell aggressive treated as a frozen shoulder until the PT started killing me. Had a blood clot to deal with, heart stopped at one point... So true second chance at life. Live it well.
Stephanie, that was a wonderful three-part interview! Robyn, thank you for sharing your very long story. My daughter, a physician assistant, was diagnosed with DLBCL In 2016 at the age of 26. It was in her brachial plexus and then spread to her brain. She underwent RCHOP with methotrexate. She received all of her treatment at The James. It looks like that’s where you had your Car T Cell? They followed that with autologous stem cell transplant. She also stayed in remission for four years, but unfortunately relapsed right before delivering her first baby in 2020. Luckily Car T Cell was no longer experimental. She received her Car T Cell therapy at The James. She’s been in remission for almost 2 years. She also had a very straightforward, positive attitude like you Robyn. Watching your story gives me lots of hope for her.
Thankful for CAR T cell!! Glad to hear about her treatment at the James!! ❤️ prayers for your daughter! 🫶
thank you for sharing. wonderful to hear your daughter is doing so well.
Robin, as a fellow DLBCL survivor, I thank you for your very powerful story. Your courage and empathy come across so very clearly. I hope you have many years in which to continue to bring healing to yourself and others.
@Luis, thank YOU for your powerful story, as well.
... and the winner of the most difficult cancer treatment on record goes to Robyn!
I love her story; I can tell she is a strong woman. Her attitude, I think, made a huge difference. I’m so happy for her . Thanks for sharing Her story !! I hope she will stay healthy forever!!
If my NHL comes back this is what I would go through. Been in remission 5 years praise god.
This was the best interview I've ever seen. Robyn is incredibly knowledgable, great fact provider, excellent job. I can only wish the best for you Robyn. Absolutely a warrior !
I was first diagnosed in 2003, with mantle cell lymphoma. I have been through just about all the treatments available, so am going in for a CAR-t transplant in a few weeks. Have already had the blood harvesting. Just waiting now for the next step. I have been a little apprehensive, But have been doing some study and listening to several videos, and am now pretty excited about the process and results. I Should be going in for the infusion in about 3 weeks.
Best of Luck David.
How did it go? What was the outcome David??😮don't leave us hanging??😮😮
@@user-wx7dd9gc6j So far I have been doing OK. I think! I am on some oral medication, but so far things seem to be in control..I am dealing with some other health issues, but for the most part, no one is thinking it is a return of the cancer.
Hang in there!
Brave and special lady...Helping other people through her own experience of such a traumatic health journey, but coming out the other side. .Amazing outlook and strength...Wishing you well in the future...Thank You Robyn S.
MD , Anderson in Arizona has THE BEST team for the patient including social workers who are your advocate for grants like Lymphoma Foundation.
Wow! What a great informative story Robyn has! I am newly diagnosed with lymphoma and have tried reading everything I can get my hands on. Thank you for sharing her story
Thank you for telling your story and sharing your experiences with the different types of therapy.
I was diagnosed with Stage 4 Mantle cell non - Hodgkins lymphoma in 2018 and have successfully undergone high dose chemotherapy as you did (R-Hyper CVAD ARA-C/ MTX). After two years I relapsed and entered a clinical trial taking the BTK Inhibiter Ibrutinib in conjunction with a monoclonal antibody/ Drug conjugate called Loncastuximab teserine. I finished the yearlong trial and achieved remission again fairly quickly. I'm currently doing well and hoping for a long remission.
In the future when I again relapse I'm hoping to still be a candidate for CAR-T Therapy.
I was offered CAR-T after I relapsed but at the time it was not something my insurance company and I could work out so I opted for the aforementioned Clinical trial.
Having listened to your experiences , I'm feeling much better about CAR-T and not so good about a stem cell transplant.
During both treatments I recieved, I had lots of side effects as you did so I know what you went through.
I applaud your strength and courage in confronting your disease and thank you for sharing your experiences, thoughts and insights.
It is very helpful and encouraging to people like me since most of the information about treatments is from doctors that can only give their medical opinions and not their personal knowledge from experience. You are the best of both worlds.
Thank you again and good luck in the future. GOD BLESS!
Such a very powerful interview. Thank you Robyn, for sharing your experiences. 🥰 They are so informative.
Thank you very much for this you spoke well and the interviewer was patient and kept her questions interjected appropriately. Cancer treatment we have been thru for family members are just what you said and lifelong side effects. Excited about this Car T cell development.
Excellent video trilogy. Robyn, you inspire us all.
Thank you for your strength and helping of others! You are a very brave lady!! Words cannot express! Xxx
Wonderful interview. Yes we do a lot of our own research. I would love to hear more about very initial symptoms.
Great interview. I'm glad she called out traditional chemo as barbaric. It's what we have right now, but it's heartening that medical researchers are well aware of the leaps and bounds they need to make before CAR-T works for every cancer, every time. We've all been touched by cancer at this point, so that's a dream worth pursuing.
Thanks a lot
After my dad's diffuse large B cell non-hodgkins lymphoma recurred, we went to City of Hope for a clinical trial, but he wasn't accepted. I think it was probably age discrimination but totally understandable. They only had no many spots, and he was 87 years old, so they to accept younger patients.
So glad with this positive Vedio about Car -T my young brother is going to have it soon i am very positive about it and i am very sure it shall heal him from his relapsed burkitts Lymphoma
Thank you so much for the vedio 😊
Robyn thank you for an amazing interview ❤️. The information was informative 👍.
So nicely explained. Thank you and wish you the best
I was on the bone marrow registry back around 2005 & kept the phone number in case I ever got anything that made me ineligible, and it happened. I got bladder cancer in 2009 & had to call them. They had to take me off of the registry & it made me sad. I was hoping to someday help someone.
How can I tell my story
You mentioned your on facebook. I need some help making decisons,
And to think all these clinical trials are now how cancer is treated regularly.
Wonder if you could interview someone who has Lupus and tried CAR-T therapy?
we need more money to make better therapy for anti cancer!
Did your ethnicity make a difference how the CAR T worked? Does it help with metastatic cancers?
What is CAR T Cell?
The rich has an advantage , all the expenses involved..
Not true. I know someone who wasn't rich but got cancer treatment for free which was a $1 milion cost. He paid nothing because it was a trial
Im really sorry but l don't believe you being a doctor had no bearing on whether you were accepted for the CAR T CELL THERAPY clinical trial, l think it played a big but that's just my opinion.
Seek out a naturopath
Much, much more than that is needed. It's ok to use natural, but NEVER without traditional western medicine.
Thanks, Donna for pointing that out!!!!
Dr amit cumar how are will get the survis this is uganda
Have you tried CHI3L1?
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