Journal

Journal entry by laurie adami

I am now tentatively scheduled to trek to Mt. Everest Base Camp in early October. Dr. de Vos is still planning to go with me but we will wait and see.  I had a few teammates drop out due to scheduling conflicts in the fall so we will be recruiting replacements. I am sure we will end up with a great group. There is a group trekking there now, they are about a week into it and they have posted lots of inspiring photos.

Bruce and Bob were with us for 10 days, the original intent of their visit was to get me in tip-top shape for Nepal. Given my continued case of the shingles and the postponing of my trip, we took the level down a little but but were still very active. We hiked up behind the Hollywood sign, see photo below.

We also went out to Palm Springs, rode the aerial tramway up Mt. San Jacinto and hiked in the snow and ice at the top. The next day we hiked in Joshua Tree National Park and also hiked a day in Indian Canyon in Palm Springs, which has gorgeous oases.

Bruce and Bob flew back to Boston last Monday and Wednesday night, Gus called with the news that he was flying home from D.C. on Friday and would be with us at least thru April 5 - he will do classes on line from home. I picked him up yesterday at an empty LAX. His girlfriend is also home from her college in New Jersey. 

Following up on my wonderful visit to Arie Belldegrun, founder of Kite Pharma, he invited me up to San Francisco to speak to the staff of his new company, Allogene, which is developing more immunotherapies for cancers and autoimmune diseases. I may be driving to San Francisco for the event which is scheduled for May 1, assuming the event takes place at all. Maybe Gus and I will take a road trip if he is still home.

I am one of the immunocompromised people at most risk with the Corona Virus so under advisement from Dr. de Vos, I am laying low, staying home and avoiding crowds. Six weeks later I am still dealing with pain and itching from shingles which will hopefully leave soon.

It’s been raining in Los Angeles for several days and looks to do so for the next week, good jigsaw puzzle making weather. After the experience I went thru summer 2018 and for the 12 years prior, I am staying calm and carrying on and am trying to focus on the silver linings as they are presenting themselves to me.

Love, laurie
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Journal entry by laurie adami

Hi All,

I, in combination with sage advice from Dr. de Vos, have decided that it makes no sense to risk a trip to Asia in just over a month with all the uncertainties surrounding the Corona Virus. I am talking to the trekking company today to agree on a plan. Likely, we will move it to November 2020, but it’s also possible we could move the trip a full year.

I have been struggling with this bad case of shingles for close to a month now and that wasn’t helping my ability to train. And my immune system could benefit from more time as I still am immunocompromised after 12 years of cancer treatment.

I will keep you posted on the trip. We all bought trip insurance but we’ll see if the insurance companies honor the policies, no doubt there is a clause about an act of God (never understood why this clause wasn’t labeled an act of the devil).

My brother, Bruce, and brother in law, Bob, are coming to LA this weekend to escape their New Hampshire winter. They were going to help me train in the run up to my April trek but I will still benefit. They are big hikers in great shape. We are heading out to Joshua Tree for a few days of exploring next week and are also going to do some local hiking.

TGIF!!

Love, laurie

Journal entry by laurie adami

I had a one hour meeting with Arie Belldegrun, founder of Kite Pharmaceuticals today. He started working at the NIH in the 1980s on the idea of using a patient’s own immune system to fight cancer and over 3 decades later it reached fruition.

I was so excited to have the chance to thank him for saving my life. He talked about the new research he is working on to expand the use of CAR T for solid tumors and non-cancerous conditions like autoimmune disease. I had him going with the idea of joining me on the Everest Base Camp trip but he has too much going on. He was a very charming man and a pleasure to spend time with - Sophie was with me and filmed our discussion.

xxxlaurie

p.s. I had one of my ZUMA-5 t shirts left and gave it to him. He said he will have it framed and put it on his wall. 

Journal entry by laurie adami

Up until 2 weeks ago, I had been on a roll with my training. Since January 10th, I have been logging my exercise activity daily (see photo below). Unfortunately, I came down with a bad case of shingles on my torso. I have been in a lot of pain although in comparison to summer 2018, it's nothing.

It's finally healing and I am getting back to my training. Yesterday, I did 4 sets of a really intense stair climb in Baldwin Hills, see photo below. Each individual stair is quite steep, rather challenging for my short legs. I understand there are lots of stairs like this trekking up to the Mount Everest Base Camp so it's good practice. 

We are still planning on the trek in April 2020, but of course will see what develops with the Corona Virus. There is a group going to Mount Everest Base Camp next week with our trekking company and it turns out one of their team members works at the Centers for Disease Control (CDC) and is not at all concerned about the virus. Masks, hand sanitizers, gloves, etc will be in my carry on! If there is any risk, we will postpone the trip to the fall.

The link to the ABC 7 story which came out a few weeks ago, including transcript, is at https://abc7.com/health/los-angeles-cancer-survivor-in-training-to-tackle-mount-everest--/5873740/

Feel free to pass it along if you think it would help someone who is dealing with a chronic illness. The story was picked up and retransmitted in Los Angeles Magazine, Yahoo News and MSN. I will keep you posted on any follow up stories.

I recently sent out a postcard communication to thank all of you for your gifts as well as to encourage additional donations. My team has raised close to $93,000 of our $250,000 goal so we have a ways to go. Reminder that my fundraising link is at www.bit.ly/cartsupergirl

The beneficiary of my fundraiser are immunotherapy researchers thru the Leukemia & Lymphoma Society. The LLS Annual Report just came out and you might find it interesting to read about their work in the past year. You will recognize my face on the cover and there is a little piece on me inside. They photoed me on the roof of the Watergate Hotel when I was in DC visiting Gus. You can view the report at  https://www.lls.org/annual-report

My filmmaker and I continue to make progress on filming our documentary. Next week, we are interviewing Dr. Arie Belldegrun, who worked at the NIH a long time ago in immunology when the idea of using a patient’s own immune cells to fight cancer was first being talked about. He founded Kite Pharmaceuticals to put CAR-T into production. He is an oncologist at UCLA and still sees patients. He’s also what I’d call a serial entrepreneur. I am really looking forward to thanking him for his life saving work in person.

That’s all from here. Will write again soon.

xxxlaurie

Journal entry by laurie adami

Here is the link to the ABC7 segment that ran last night. They are running it again tomorrow. The producer let me know they want to do a follow up story with me before I leave for Nepal as well as one when I am back from the trek.

https://m.box.com/shared_item/https%3A%2F%2Fllsdata.box.com%2Fs%2Ftsdwrd7sgl6nh94c0k4ptcl0k3tzya5t

Yesterday, we snowshoed for a few hours which is really fun and quite a bit less strenuous than cross country skiing. We left Brian Head at 5:30 a.m. today and drove into Zion National Park as the sun was just beginning to rise. We had breakfast at Zion Lodge, drove through the park, and took a short walk before heading home. I will be back there for sure.

Journal entry by laurie adami

I heard from the show producers that the segment about my story will air on the 6 pm ABC 7 Local news tonight. They will provide the piece to me in a form that I can post online. Not sure how they take a 4+ hour interview and condense it into a few minutes but we will find out.

Sophie and I had a long (5 hours) cross country ski outing yesterday. I took several tumbles but thankfully there was plenty of soft snow to fall into. I have posted a few photos below from the day. We were the only skiers on the trail and it was a beautiful day, not too windy.

Today we are going snow shoeing, first time for both of us.

We drive home tomorrow and will make a stop in Zion National Park on the trip home.

xxxlaurie

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

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

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Site created on June 21, 2018

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