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November
13
2020

The Prequel to the documentary is LIVE

As you know, I am making a documentary film which will be completed after I trek to the Mount Everest Base Camp with Team CAR-T. The date for the trek is now tentatively set for October 2021. Before I can go, there needs to be a well-vetted, safe and effective Coronavirus vaccine.

Please watch the prequel to the film. I enjoyed the process of putting this together with my very talented filmmaker, Sophie Dia Pegrum (Sophiepegrum.com). Some of the filming took place over Zoom but most was filmed prior to the coronavirus lockdown. The duration of the prequel is 6 minutes.

https://vimeo.com/476007331

And remember, you can follow my ongoing story at www.bit.ly/CarTSupergirl.

Enjoy!

Love, laurie

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September
30
2020

Before/After Laurie

Sorry about all the posts of late but I just had to share these images with all of you. I had asked Dr. de Vos to send me the images from the PET scan one week prior to my getting my CAR cells back July 2018 and then the scan at 30 days post CAR-T in August 2018 as I have been working on the documentary and want to include them.  

The dark areas are the tumors - many of you will remember how swollen my face was before CAR-T and very clearly both sides of my face showed massive tumors. The dark spots in the after image  are just normal organ (kidney) function.

I was at UCLA yesterday to restart the monthly immunoglobulin infusions and all went fine. I will look forward to fewer viral flares as a result.

So grateful for science but there is still so much more to be done.

September
23
2020

Bristol Myers Squibb CAR-T Educational Event tomorrow on Facebook -edited to include the link to the event

Reading my blog, you all probably well understand CAR-T by now. We recorded this event over Zoom with two experts and I represent the patient experience. It’s airing at noon PT/3 pm ET tomorrow, September 24. If you miss it live, you can watch it later. It’s around 20 minutes long.

 
Image may contain: 3 people, text that says '山 Bristol Myers Squibb™ Join us for α discussion on CAR T Cell Therapy September 24 at 3:00 p.m. ET on the Bristol Myers Squibb Facebook page Dr. Renier Brentjens Clinician and Researcher in CAR Dr. Lee Greenberger Chief Scientific Officer of The Leukemia & Lymphoma Society Laurie CAR T patient'
Bristol Myers SquibbLike Page

Want to learn more about #CARTcelltherapy? Curious about how it works and eligibility considerations? Return to this page on Thursday, September 24 at 3:00 pm ET to view a discussion on this topic and gain insight from experts. https://bit.ly/2RAZppL

 
 
 

September
16
2020

Finally a Cover Girl

At the ripe old age of 60, my little girl fantasy came true to be a cover girl. I received the August Conquer magazine today and I am on the cover. Be good all.

September
10
2020

Conquer Magazine Article

Hope everyone is staying well and finding serenity somehow in this crazy world we live in.

I had another flare last week of the viral infection I developed in 2018 during my CAR-T hospitalization so that’s coloring my world rather negatively at the moment. I am trying not to forget that while I struggle with immune issues, my cancer has been gone for over 2 years and that’s the most important thing. De Vos ramped up my antivirals again so hopefully the flare will fade soon.

I am going to UCLA Monday for blood work to see if I need to restart immunoglobulin infusions to boost my immune system. I am looking forward to getting out of the house as I don’t go many places these days. I have groceries delivered and Ben is my errand man.

Gus headed back to D.C. the first week of August to start his junior year and has his first apartment with his good buddy, Nick. While he is doing all of his classes online, he is working as an EMT on campus and is trying to find a part time job or internship, with no success to date. He has weekly corona virus swab tests and so far so good.

I wanted to post a link to an article that came out today about my journey in Conquer magazine, thought you’d enjoy it.  

https://conquer-magazine.com/issues/special-issues/august-2020-immunotherapy/1319-from-the-brink-of-death-to-the-top-of-a-mountain-the-magic-of-car-t-cell-immunotherapy

Take care and thanks for reading!

love, laurie

July
13
2020

“Excellent” two year scan

I had my 2 year post CAR-T PET scan today and Dr. de Vos texted me shortly after to let me know the scan looked excellent. Breathing a sigh of relief here and feeling so blessed to have been able to get the CAR-T treatment when I did. Gus drove me to and from the scan, was sweet to have a driver and to get out of the house. 

He flies back to D.C. on August 4 to start his junior year. He will be in an apartment this year with a close friend. I am disappointed that I can’t go with him to help him set up his place but I’ve come so far and just don’t want to take any chances by traveling now.

I have really been enjoying our pool and swim a mile several times a week. I still have hopes of getting to Nepal next year but time will tell.

love, Laurie 

May
22
2020

“Finding Your Summit” Podcast

My spot on ex-NFL player, Mark Pattison’s podcast “Finding Your Summit” aired today.  I thought you might like to watch, it’s 48 minutes long. 

To access the podcast, please visit Mark’s website at:
https://www.markpattisonnfl.com/152-laurie-adami/

May
19
2020

Preliminary Results Published for my ZUMA-5 CAR-T Trial

Great announcement yesterday from Kite Pharma regarding the ZUMA-5 CAR-T clinical trial I participated in July 2018. I am sure Arie Belldegrun, founder of Kite, is very happy with the results - I was concerned to learn recently he contracted the corona virus in March while attending a biotech conference. Fortunately, his case was mild and he has fully recovered.

There were 80 patients in the follicular NHL group across the U.S. - 95% of these patients had a response and 80% attained a complete remission, truly an astounding statistic. My gut tells me Kite will be able to skip the Phase III trials and Yescarta CAR-T will be fast tracked for approval by the FDA by the end of the year. In all the years since my diagnosis, I have never ever seen this strong a result.

Side effects were not insignificant in this group of patients. I am in the statistics with grade 4 cytokine release syndrome and neurotoxicity (on a scale of 1-5, with 5 being mortality) but I think if they published side effect statistics based on how early in the trial one participated, we would see a sharp declination in the side effects in patients who participated in this trial more recently. They learned a lot from the first participants, like me, who experienced the worst time and now have methods to temper the extreme inflammatory reactions that can be caused by the CAR cells.

I am posting the brief release here; there will be additional data released later in the year. 

https://meetinglibrary.asco.org/record/186013/abstract

My interview on Mark Pattison’s “Finding Your Summit” Podcast series will be released this Friday, May 22 and I will post the link when it is available.

Hope you are staying out of trouble wherever you may be.

With love, Laurie