Journal

Journal entry by laurie adami

I can’t believe we are approaching the holidays and I’ve not even thought about it except to be excited about Gus’s upcoming trip home from D.C. for Thanksgiving. He’s really enjoying his classes and took a formal photo he is using for his internship applications (see below).  For the second year in a row, we will be with Gus’s girlfriend, Hailey’s, extended family. We are so close to all of them and I won’t have to cook, clean up and deal with leftovers so I am happy!

My documentary film is slowly being constructed with the finalized product coming out after my April trek to Mount Everest Base. Sophie filmed my trial coordinator from last summer, Anna, as well as Dr. de Vos. She said she got lots of great footage.

Sophie and I did a challenging hike to Hondo Canyon last week - 7 1/2 miles and 1600 vertical feet (see photo below). It’s a beautiful trail near Malibu and is mostly in the shade. I’ve also regularly been doing a 5 1/2 mile loop from our house up to Briar Summit and then around the Mulholland loop. My hiking boots are great and I am experimenting with day packs and water bladders. I also did a great 10 mile hike in Fryman and Franklin Canyon one day (see the hike stats below on my iWatch).

I flew to Silicon Valley two weeks ago to meet with the Facebook CEO for Europe, the Middle East and Africa, Nicola Mendelsohn. She lives in London but was in Menlo Park for meetings so we were able to meet in person (see photo in front of the Facebook wall). She was recently diagnosed with follicular NHL and started a private Facebook group which now has over 6,000 members. She is also launching a foundation to help fund more research for cures.

I am completing my training this week to become a bedside buddy volunteer at the UCLA hospital in the transplant facility where I stayed summer 2018 when I got my CAR-T. I will complete the paper work next week and hope to start the week following, just in time for the holidays which is a good time to start helping.

Ben and I had Dr. de Vos and his wife, Isett, to dinner at our house a couple Sundays ago. I wanted to host them and share my gratitude with them both. They are delightful people, I am just disappointed she won’t join us in Nepal in April. Lots of laughter and some tears also as we talked about my health journey, rather cathartic.
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Journal entry by laurie adami

Lots of good goings on for me.

Thursday, my documentary filmmaker came over to the house to shoot an interview for our documentary, see still clip below. Yesterday, I took the plunge and booked my flights to and from Kathmandu (cue up the Bob Seger song...never thought I’d go there). I leave Los Angeles April 7, 2020 and return April 27.

My latest (third) pair of hiking boots seem to be the ones. I have been wearing them everywhere I go and they are comfortable finally. I still have pain in my feet, from cancer treatment related neuropathy but I will be fine. I am hiking this Saturday and Sunday locally so we will see how the current promising boots do.

I am in process to become a Bedside Buddy at the UCLA hospital where I was in “residency” last summer. I was tested to see if my vaccinations for measles, mumps, rubella etc were still protective. My super organized mom kept a hand written vaccination card starting in 1959 (okay so now you all know I am turning the big 6-0 this year, yay!) when I got my shots so that came in handy for the nurse. They took blood, checked my protections and I am good to go. I still have to complete 4 training modules but I am sure that will be interesting.

In the meantime, I have been helping a woman who is in a CAR-T trial at UCLA. She got her CAR-T cells back one week ago and I have been in to see her at the hospital several times. She’s having some modest side effects so that’s a good sign the CAR cells are engrafting.

I was connected to her thru the LLS First Connections program which puts newly diagnosed or relapsed cancer patients in touch with survivors ahead of them on the journey. I am getting very busy with First Connections as CAR-T trials ramp up everywhere. I have to be careful about how I explain my story so I don’t scare people. My experience last summer is increasingly becoming an outlier as they have developed techniques to slow down the CAR-T explosion if it goes too fast like what happened to me. I also likely had one of the largest tumor burdens of surviving CAR-T patients. 

It’s going to be hot in Los Angeles this week so I will swim laps this week. Ben wants me to start working on pushups and upper body strength; Gus suggested I start with knee pushups and build up from there.

Speaking of Gus, on Thursday eve and Friday, he did a double EMT shift. At midnight, they got a call that a person was out of control on one of the streets in Foggy Bottom. EMTs and multiple police responded. He said the woman was very drunk and was likely on meth although she refused to tell them what she had taken. After slugging 3 police officers, they had to restrain her and haul her off in handcuffs to the GWU hospital. He’s seeing some heavy stuff. He also just got certified to drive the ambulance with lights and sirens. He’s wanted to do that since he was about 3 years old, lol. 

Have good weeks.

xxxlaurie

Journal entry by laurie adami

I had such a wonderful time surprising Gus and spending time with him in D.C. He seems to be enjoying his classes and also his new role in the student EMT program. He’s now had plenty of calls and has seen a lot - drug overdose, suicide attempt, allergic reaction, severe flu and drunk students who needed their stomachs pumped. 

On my trip east, I also visited my siblings in New England and we all  did a hike in the White Mountains to the summit of the Dickey and Welch trail.

This past Sunday, I summited Mount Wilson in Pasadena, CA, 8 miles up, 8 miles down and close  to 4000 vertical feet. The hiking boots I purchased are not going to work so back to square one on that.

Yesterday, I spoke at the UCLA Celebration of Life, a beautiful event to celebrate cancer survivors and memorialize those who didn't survive. I am attaching a link to my Youtube video if you’d like to watch it. I met more wonderful people and saw lots of staff from last summer, including the nurse, Micele, who infused my CAR-T cells on July 16, 2018.

https://youtu.be/hQBhMCsCvEY

This coming Monday is my 15 month post-CAR-T scan. I will post when I learn the results. Xxxlaurie 

Journal entry by laurie adami

I was interviewed last Friday by a reporter for US News and World Report. I was led to believe that it would be a brief, 4 paragraph article but it turned into a much more sizable piece. The reporter, Lisa Esposito, was shocked at what I went through and wrote a very accurate piece. You can read the story at:

https://health.usnews.com/conditions/cancer/blood-cancer/lymphoma/articles/follicular-lymphoma

I flew into DC on Monday to surprise Gus, I showed up at his dorm and knocked on his door and he was definitely surprised to see me thru the peep hole in his door. Making up for lost time and my inability to visit last fall during his first semester of freshman year.

Love, laurie

Journal entry by laurie adami

I bought my first ever pair of hiking boots last week and tried them out on Saturday night when I hiked the Los Liones trail with a bunch of friends for a (day after) full moon hike. We got to the top in time to watch the sun set and then waited for the moon to rise in the east. Suddenly there was an orange aura on the horizon and the moon rose, a massive orange ball (I am told that's caused by the Los Angeles smog). I have posted a couple of pictures from the top.

Thank you everyone who has donated to my fundraiser - reminder all donations are going directly to fund additional CAR-T Immunotherapy research. Two friends donated 2 experiences that I am auctioning on Charity Buzz. These experiences will take place in Los Angeles so if you are out of the area, it won't make sense. But if you are local and are on Facebook, please post the links to your pages, the more people bidding, the more money we will generate for this cause.

The first is two tickets to a live taping of Dancing with the Stars along with a likely meet and greet of the celebrities. This auction ends in 5 days:
https://www.charitybuzz.com/catalog_items/2-tickets-to-live-taping-of-dancing-with-stars-season-1871500

The second is two tickets to the Los Angeles Rams vs. Seattle Seahawks NBC Sunday Night football game in Los Angeles on December 8. Tickets include a behind the scenes tour and meet and greet with the NBC commentators. This auction ends in 4 days:
https://www.charitybuzz.com/catalog_items/meet-nbc-announcers-enjoy-behind-scenes-tour-with-2-1871501

I also continue to swim and am having a conversation with one of the Climb2Cure Team in Training coaches to get my formal training launched. 

My 15 month post-CAR-T scan is on October 14.

Thank you always for your love and support. 

xxxlaurie

Journal entry by laurie adami

A tad late, but I finally got to the ICU and the transplant floors today to let them know I have been in a complete remission for over a year. They were happy to hear about my one year birthday and it was funny to see their reactions when they realized it was me! Some of them only recalled who I was because of my T-shirt.  I brought 6 dozen cupcakes to thank them for all they did. I also peeked into ICU room 27 which was where I spent most of my hospital time last summer.

I am attaching a few photos of my visit to both hospital floors. I have been asked to speak at the UCLA Celebration of Life in the auditorium at the main hospital on October 8 at 10 a.m. Let me know if you’d like to attend.

I am also attaching a photo from my trip to DC with Gus last week. I baked him cookies in his new residence as he has a full kitchen this year.

Heading on a 6 pm hike tonight and also have been doing a lot of lap swimming. I know I am getting stronger because on my flight home from DC, I finally had the strength to lift my bag into the overhead. More progress!

love, laurie

p.s. I am applying to volunteer as a “bedside buddy” on the transplant floor

Journal entry by laurie adami

On Saturday, Gus and I flew to D.C. to set up his dorm for sophomore year. All week he is in full day EMT training and we meet up when he finishes at 6 pm. I seem to be visiting Bed Bath and Beyond frequently. This year, he has a full kitchen but he had no kitchen supplies. I am having so much fun picking everything out.

Today I visited the National Art Gallery and the American History Museum, where I took a photo of the Penicillin mold which Fleming discovered in 1928 which finally helped eradicate bacterial infections. The invention of CAR-T immunotherapy has been likened to the discovery of penicillin and the indications all point to the use of CAR-T to revolutionize the treatment of cancer.

xxxlaurie

Journal entry by laurie adami

I recently and randomly crossed paths with a real estate agent, Liz Bates, who told me she was interested in changing her commission structure to help fund charities. She wanted to reduce the commission she received in a transaction and encourage the seller to donate at least part of their savings to a charitable organization.

Liz just launched a new business called Liz Bates, Real Estate for Good. She has elected to reduce her commission to 1% of the sale price of any home sale she is involved with. The standard real estate commission is between 5% and 6% of the sale price. The broker on the other side will still take their standard commission but Liz will take much less and is asking her clients to make a donation to charity of at least part of the monies she is saving them in commission.

Liz just closed her first deal under this new model, and her seller donated $2,500 of his commission savings to my Everest Base Camp fundraiser. Reminder that all the monies I raise will fund additional CAR-T and immunotherapy research. Thank you to Ed and his wife Vicky who so generously have supported me (see photo below).

If you know anyone buying or selling a home in Los Angeles, San Diego and Orange Counties, Liz is licensed to transact business in all three counties. 

I am not sure how well I explained Liz’s new approach but you can read more at:
https://lizbatesrealestate.com/

And this is her real estate website which also provides more information:
https://rebatesre.com/

I was recently reminded that LLS was the first organization to fund CAR-T research back in the 1990s when LLS issued research grants to Arie Belldegrun at UCLA and Karl June at University of Pennsylvania. Arie went on to found KITE Pharmaceuticals which is the CAR-T product that saved my life last summer. The Penn CAR-T product was bought by Novartis and is also performing well. In the 1990s, the idea of using a deactivated HIV virus to supercharge a patient’s T cells was considered science fiction by other potential funders of these two research projects - LLS considered the idea brilliant and jumped in right away to fund them.

I am continuing to train for my trek next year. I have been swimming 4-5 times a week and also started lifting weights to get more upper body strength. Sophie dia Pegrum, the documentary filmmaker who is joining me on my Everest Base Camp trek and is producing a short film will begin to photo journal my training. I will start to post photos and updates on a more regular basis.

One year ago today, I was in the ICU at UCLA Ronald Reagan Hospital just hanging on. Wow, what a difference one year has made. Last year, I was unable to take Gus to D.C. for the start of his freshman year of college. This year, I will help him move into his new living quarters. He is going to be on the student EMT staff on his campus and is very excited to be starting his new mission.

Love you all, laurie

Journal entry by laurie adami

I guess I still sweat these scans, will it ever stop? De Vos went down to the radiology lab right after I finished scanning today at UCLA and was the first to read the report. So relieved at the good news.

I am also very happy that both Dr. de Vos and Dr. Timmerman are registering to climb to Everest Base Camp with me. For those of you who are worried about my doing this, I hope you are a bit reassured by the company I will be keeping. That said I wonder who will be helping whom?!

Getting back in the pool this weekend to restart lap swimming.

love, laurie

Journal entry by laurie adami

Dear my dearest friends,

I can’t quite fathom that I am writing you yet again that I have had a large relapse and need to go into treatment again. This will be my 7th go round in 12 years. Many of you know that I will be doing my 3rd clinical trial, this time of KITE’s Yescarta CAR-T therapy, a potentially groundbreaking immunotherapy that uses my own T cells, genetically modified to target my cancer. Please google it if you are interested to learn more as I am just too tired to explain it again as it is quite complex. The trial is still early stage especially for my diagnosis, follicular non-Hodgkin lymphoma, which is still considered incurable cancer. There are only 5 slots in the trial at UCLA that just opened about a month ago.  I have the first slot so I am the leading guinea pig, I guess.  That means I am getting lots of attention from both KITE and a bunch of oncologists and nurses at UCLA. I feel very confident with my team and have been with them since 2011, when I entered the phase I study of the immunotherapy CAL-101 that kept my lymphoma mostly stable for 6 years.

The last several months have brought biopsies to confirm my disease hasn’t become more aggressive (that was a relief to learn), then I had a year old sinus infection that just wouldn’t go away regardless of what we hit it with so I ended up having sinus surgery about 4 weeks ago which was no fun but that appeared to be the only way to kick the infection and we couldn't start CAR-T until I got rid of that.

Last week all the outpatient fun for the trial started: baseline pet/ct, labs, ekg, echocardiogram, brain mri,  more labs, about 20 tubes of blood for analysis by KITE. Because I have no veins left in my arms after 12 years of this unrequested adventure, I had surgery Tuesday this week so they could place a two line catheter (for harvesting of my T cells) on the left side of my chest (they normally place it on the right side but I already have my one line power port there). It was a difficult procedure and I was awake during it and unfortunately had a really bad reaction to the fentanyl (an opioid which I was too out of it to catch when the surgeon was talking to me about using it before the procedure) that they gave me as a premed to relax me.  About two hours after I got home from the surgery, I had drenching sweats, itchy skin all over (surprised i didn’t tear off my skin completely), an excruciating headache, nausea and then I barfed a bunch of times. Sorry, why would anyone choose to take this s*it, it’s absolutely evil! Of course this all happened the day when Gus was flying to Fiji for his scuba diving adventure. He offered to cancel his trip, but no way was that happening. He was getting picked up at 8 pm to go to LAX and fortunately, my reaction only lasted a couple hours so he saw me mostly back to normal before he had to leave.

Then yesterday I went in for my T cell harvesting which took about 5 hours. They remove blood cells thru one of the cath tubes, spin it and remove the T cells then return the remaining blood product via the other catheter. I have attached a couple photos from yesterday showing me hooked up to the apheresis machine and also the finished product of my harvested T cells which the KITE courier picked up while I was still there.  During my T cell harvesting, I had a long conversation with one of my oncologist’s sidekicks who has a lot of experience w car t also. As I always do, I had a lot of concerns, raised a lot of questions and made him go thru all the results from all of my tests. One of the concerns I raised was regarding the bulkiness of my disease and the possibility that the infusion of my car T cells could cause extremely dangerous side fx. I had been tentatively scheduled for chemo conditioning the week of July 9 -it is very low dose chemo designed to make room in my body to accept back my gmo T cells. Then I was scheduled to check into the hospital on July 15 in order to get my T cells infused back into me on July 16 (the 24th anniversary of when I met Ben...a good omen?) thru my two line catheter. Then I will likely be in the hospital for 7-10 days to wait for possible side fx, which I won’t post here as it will just scare me again. Feel free to google those too...

Well to make a long story longer, I just got off the phone w my UCLA oncologist, Sven de Vos. He is strongly recommending  that I have a round of chemo next week, hopefully a one shot deal that will debulk the lymphoma enough for me to proceed with car-t in July. I will have 3 of the 4 drugs that I had back in 2006. It was rough then but they are leaving out the roughest one (adriamycin) and hopefully I can just do one cycle and not have to do more. In 2006, I had 6 cycles. I think this is a really prudent move. Then we will reevaluate and see how much shrinkage I had and hopefully get back on track without too much delay.

Thank you all very much for your emails, texts and calls- I love getting them! I'm hoping this will be an easy way to communicate with you and share updates, as I'm not always able to respond individually. I will plan to post on a regular basis and if I am unable, I will have others post for me. Thanks for understanding about the caring bridge, I am just totally overwhelmed dealing with everything, 12 years of this has been so rough. I am so tired from all of the physical stuff my body has been thru in this latest go round and am just trying to rest, relax and heal from all that has happened to get ready for the next go round.

Love you, laurie

Laurie’s Story

Site created on June 21, 2018

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