Journal

Journal entry by laurie adami

Sophie and I left Los Angeles at 6 a.m. yesterday morning, we passed Vegas by 10 a.m. and arrived in Brian Head at our lodge a little after 1 pm. I am attaching a couple photos from the car window. Who knew it was so quick and easy to get to Utah? Not me! I was in Utah only once before in 1984 when I drove from Boston to LA to start my new job. On that trip I passed thru Salt Lake City. 

Brian Head is at 10,000 feet. There’s over 2 feet of snow up here and the temp is in the 20s, nice change from mild weather in LA. I have been drinking lots of water and am trying the chloroxygen drops to see if it helps with the altitude. I am also wearing my new long Johns, compression hiking socks and using my camelback water pack today.

We are heading out shortly to rent snow shoes and cross country skis. Cross country skiing was always one of my favorite winter activities in my college years but it’s been over 3 decades since I have done it. 

I just received confirmation that the segment on ABC7 will air tomorrow but still no idea of time. If it’s a slow news day, they may run it more than once.

xxxlaurie

Journal entry by laurie adami

I had my 18 month PET CT scan yesterday and Dr. de Vos texted me shortly thereafter (see text chain below) that I had an excellent scan. Even though I could feel no tumors and had no reason to think I had a recurrence, it was so wonderful to get the confirmation I am still clean. According to the trial protocol, my scans will move from quarterly to every 6 months now. I also got the news that my immunoglobulins levels are normal and I no longer need to go in monthly for IVIG infusions. I will retain my port because I still have no veins in my arms after 5 years of dozens of infusions directly into my arms so I will just need to visit the nurses at UCLA once per month for my port to be flushed. While I will be with Dr. de Vos for a few weeks in Nepal in April, I won’t be seeing him medically until my next scan in July, wow that’s a milestone.

Wednesday, I spent many hours with the photographer/journalist from ABC7 news. He recorded me on a hike in Fryman Canyon, then went with me to the Santa Monica stairs and recorded me there and also tagged along and filmed me while I was buying my trekking gear for the Everest Base Camp trek at REI. Real nice guy, who had a dad with blood cancer. He interviewed me extensively on camera and I felt like I just blathered on for hours but hopefully ABC will put together a compelling piece from my blathering. They are to notify me when the piece will run and I will post it here. He said typically the stories appear on the ABC web page so I will hopefully also be able to include the link.

Two more people I have been helping with their CAR-T had clean scans this week, such awesome news for more people who were very ill. 

It seems likely that the FDA will fast track the approval of KITE CAR-T for follicular NHL. This this will probably mean elimination of a phase III and potentially approval by the end of 2020. Now that they are doing a much better job at eliminating the neurotoxic side effects I experienced, they are moving to do CAR-T in an outpatient setting which will greatly reduce the cost of the procedure. 

Hoping to visit Kite Pharma in February to film where my cells were genetically modified, just waiting to hear back from the legal department at Kite.

Thanks for reading and have wonderful weekends.

xxxlaurie

P.S. I simplified the URL for my LLS fundraiser, pls visit bit.ly/cartsupergirl

Journal entry by laurie adami

I learned this morning that a news crew from ABC 7 Los Angeles wants to interview me about my health journey.  They will join me on a hike tomorrow morning and will conduct the interview during the hike. The segment will air in the Los Angeles market on Thursday, January 23, I will post the air time when I know it.  I will be in southwestern Utah doing altitude training on January 23, so I will miss the broadcast but Ben reassured me he will record it. I am grateful for the opportunity to give others hope and raise awareness of CAR-T.

xxxlaurie

Journal entry by laurie adami

Had to share this — I hiked to the top of Hondo Canyon out near Topanga early this morning and discovered a happy face etched into the moss on the side of a rock (see below). The hike was 7 miles long and about 1700 vertical feet. Tomorrow is exercise rest day but I will volunteer at UCLA for as long as they need me.

Good news on one of my LLS First Connection CAR-T patients. She just had her one month scan last week and got the great news that she had a complete response and there is no evidence of her disease. She has a young daughter and I am so relieved for all of them.

As I mentioned, my 18 month scan is this Thursday at 8:30 a.m. Over the weekend, I realized for the first time since my 2006 diagnosis, I don’t feel any anxiety about the scan, a welcome change.

xxxlaurie

Journal entry by laurie adami

Our holidays were mellow and easy. It’s been great having Gus home for 3 weeks, although between his job at the Santa Monica Ice Rink and his girlfriend, Hailey, he has been quite occupied. He and Hailey surprised me with an overflowing stocking on Christmas morning with all kinds of goodies for my upcoming trip to Nepal - hand warmers, solar phone charger, head lamp, first aid kit, etc. 

Now that my toe is fully healed, I am ramping up my training for Everest Base Camp as I head to Kathmandu in about 3 months. On New Years Day, Ben and I hiked 12 miles on Mount Lowe and encountered quite a bit of snow at 2500 feet, see photo below. Today, I hiked the Danielson Monument trail which was almost 9 miles (gorgeous scenery photo below) Both of these hikes had ~2700 vertical foot gain.

My LLS team, Team CAR-T is now full. There are 11 of us going and it’s a wonderful group. We are going to have quite a time. I am reading a book now called “The Way of the White Clouds” by Lama Anagarika Govinda which is expanding my knowledge of Buddhism and the area I will be visiting. 

In a couple weeks, I am driving to Cedar Breaks, Utah, with my filmmaker, Sophie. It’s in southwest Utah and is at 10,000 vertical feet. We are going to snow shoe and cross country ski which I have always loved doing. I am also going to likely go to Colorado for more altitude experience.

I continue to feel well and on January 16, I have my 18 month post CAR-T scan. I will post with the result here to update you all. Assuming it’s a clean scan, the frequency of my scans will space out to every 6 months.

Finally, on New Years Eve, I was sitting in the house at dusk when I heard the call of a great horned owl just outside our glass doors. I quietly opened the door and observed the owl in the trees. I was able to capture a photo of him. Soon after a second owl joined him with a higher pitched call, a female. Part of their courting ritual, Ginger suggested. A good omen for the new year we are now in.

Hope you all had a restful holiday season.

love, laurie

Journal entry by laurie adami

On Saturday, I spoke at Shabbat Services at one of the largest temples in Los Angeles, the Sinai Temple, invited by Rabbi David Wolpe to share the story of my cancer journey. Several hundred people were in attendance and at the conclusion of the service, congregants came to speak to me, expressing heartfelt emotion and appreciation for the hope I gave them as they are going thru their own journeys with cancer. This was a great reminder of why I continue to try to get my story heard.

Last night I was invited to an event at Kite Pharmaceutical headquarters in Santa Monica, the maker of my magic t-cells. I met a lot of people on the management team and am hoping one of them will join me in April on my trek to the Mount Everest Base Camp. They are interested in contributing to the documentary I am producing, including allowing us to film at their production facility in El Segundo where my t-cells were genetically modified for one month. They have a special elevator in El Segundo called the Elevator of Life that transports the CAR-T cells to the ground floor once they are fully produced. Kite also has an ambassador program similar to LLS First Connections where they connect patients who are going to be getting Kite CAR-T with those who have already had it. I will participate in that program.

I have volunteered 2 Wednesday’s at UCLA as a bedside buddy and have found it very rewarding. I feel like I have been able to help not only the patients undergoing CAR-T but also those receiving stem cell transplants and inpatient chemotherapies. I have learned the areas behind the scenes that I didn’t know existed when I was doing my CAR-T there in summer 2018. No one told me there were popsicles in the freezer in the nutrition room - I wish I had known as it might have helped soothe the pain I had from the infection in my lips post CAR-T. It has been wonderful to see staff I hadn’t seen since August 2018, they are all shocked at how much better I am doing than when they last saw me.

I returned to the orthopedic doctor this past Monday, two weeks after I broke my big toe on a hike. They X-rayed it again to see how it was healing and were shocked to discover the fracture is barely visible on the X-ray. The doctor told me usually at the two week point, it looks worse than the initial X-ray because of inflammation but that was not my case. Must be those magic CAR-T cells that are still ricocheting about my body. He told me I don’t need to wear the boot any more, just firm shoes. I ventured out in my hiking boots today and it felt good, just a tiny bit of discomfort.

I am now less than 4 months from my flight to Kathmandu (with a layover in Doha, Qatar). I have raised over $80,000 so far but have a long way to go to get to my goal of $250,000. I am ever optimistic I will accomplish this and look forward to choosing research projects to fund with all of the money I raise. As a reminder, my fundraiser link is at www.bit.ly/2yMzGRM if you haven’t had a chance to make a donation - I so appreciate each and every gift. Feel free to share the link on your social media also.

Santa and the elves are hard at work up here in the Hollywood Hills on all the preparations. Gus arrives home on December 19 and will be here for 3 weeks. He will again work at the Santa Monica seasonal ice rink and was excited to learn that they bought a full sized Zamboni for the rink which he looks forward to driving.

Thanks for reading!
xxx laurie

Journal entry by laurie adami

I had an amazing exercise week last week. I walked 97,556 steps, 40.30 miles and climbed 217 flights of stairs (see summary below). I hiked Temescal Canyon, Briar Summit, Franklin Canyon, Nichols Canyon, Fryman Canyon and Mt Loew up to Echo Mountain (see photo).

Yesterday morning starting the new week, I set out on another hike, climbing up Franklin Canyon. I passed a monstrous construction site at the top of the hill for a new estate (see photo) and I had just started my descent from the top when I slid, fell and twisted my right foot badly. I was 4 miles from my car and hobbled my way back.

Today, I went for an X-ray and sadly, the big toe on my right foot is broken. Nothing but time passing can be done but I was given a walking boot which makes things much better and less painful. In the absence of not being able to hike, I will figure out other cardio exercises. Thankfully toes heal very quickly so I won’t be hobbled for long. Good reminder that I need to honor my tortoise self and not go too fast thru life.

I was onboarded at UCLA as a Bedside Buddy on Friday and will start my volunteering with patients on the hematology/oncology transplant floor at the main hospital next week. I have a uniform and a badge to wear when I work. I am so looking forward to helping. 

I turned 60 last week but I think my CAR-T cells are a magic potion that have me aging backwards now. I certainly don’t feel that number, neither physically nor mentally.

Heading out shortly to pick Gus up at the airport. He will be with us til Sunday. We are spending Thanksgiving with Hailey’s (Gus’ girlfriend) family very nearby. And I am grateful with my foot incident that I won’t spend hours in the kitchen on my feet!

Happy Thanksgiving and safe travels if you are on the road.

love, laurie

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.

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

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

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

SVG_Icons_Back_To_Top
Top