Journal

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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Journal entry by laurie adami

i just got my schedule for next week. Monday at 10 a.m. I have my ivig infusion, this is a monthly process to help me fight infections. I have had one before, it was easy and I know what to expect. Tuesday at 2:30 pm, I have another lymph node biopsy which is for the optional part of my study, they will genetically map my tumor which could come in very handy in the future. Wednesday at 8 a.m., I have my extra one shot dose of CVP chemo. Hoping this will shrink stuff fast so I can get on with next steps in the trial. Have good weekends, my plan is to rest at home.

Journal entry by laurie adami

I had my immunoglobulin infusion yesterday. It went fine but the nurse was definitely having an off day and somehow contaminated the blood she drew to test my creatinine levels. De Vos wanted to check to see if my kidney function is still ok. I never like criticizing nurses as they are 99.9% angels, at least in the oncology field.

My lymphoma is in my kidneys and of course chemo tomorrow will put pressure on them. Today, I started taking allopurinol to protect my kidneys for tomorrow's chemo. Given the bulkiness of my tumors, they are concerned that the tumor breakdown that better happen tomorrow could cause tumor lysis syndrome and could damage my kidneys. This drug doesn't have any side fx and I have taken it over the last 12 years when I have been on chemo so not a big deal. 

Today, I head back to UCLA (my summer camp...) to have a lymph node biopsy. They will just use a local numbing agent, the docs always say it won't hurt. I will get thru it and then they will have my untreated tumors genetically mapped. Not terribly helpful at this moment in time but the advances are happening so quickly that it's likely this tissue sample could help me in the future, should I need further help.

Tomorrow, I have my CVP chemo, hopefully just the one cycle will go a long way to shrinking my tumors. One of the drugs in CVP is Prednisone and starting tomorrow morning, I will take 100 mg of prednisone. This dose continues for 5 days in total and is designed to augment the work of the other two drugs: C is Cytoxan and V is Vincristine. Back in 2006, I had the V (also known as Oncovine) in my R-CHOP chemo and it gave me bad neuropathy in my fingers and feet (which thankfully has long gone away). I informed Dr. de Vos of this issue and he agreed to cut my V dose in half. And since I am only supposed to have one cycle this go round (only tomorrow), this shouldn't create any problems for me.

But back to the Prednisone. After 5 days of being on it, I stop it cold turkey, no weaning off it for us cancer patients. That's kind of the day when Ben needs to make himself disappear as I am usually a bit of a loony tunes when I go off the Prednisone. As one of my cancer buds told me last week, Ben will go from a hero (while I am on the Pred and feeling great) to a zero. I told him this so he is forewarned.

Gus called from his scuba trip in Fiji last night. He got his advanced scuba certification on the trip and had a really terrific experience. He comes home tomorrow. Due to the time difference, his flight lands at LAX before it takes off from Fiji, hee hee. 

Glad I can still laugh about stuff.

Love, laurie

Journal entry by laurie adami

My chemo was scheduled for 8 a.m. this morning and I was here on time. Sadly, the oncologists insisted that my creatinine levels be checked before chemo starts today and there was no way to bump my blood work to the front of the lab line at UCLA so I will have to wait another 45 minutes to get the result meaning I will have waited over 2 1/2 hours just to get the show on the road. This is the maddening stuff that can happen at these big research hospitals and while I know UCLA is on the cutting edge of nhl research, I wish they would focus more on the patient experience can be less than optimal.

Once my chemo is started, it will take 2 hours and then they will hydrate me probably for another 2 hours. I took my allopurinol this morn to protect my kidneys and my 100mg prednisone horse pills. The pred side fx have already kicked in.

I wonder if I added up all the wait time I have had with doctors, treatments, etc. over the last 12 years, how much time I have spent waiting around. My time appears to have little value to others. Ok, off my soapbox now.

Outcome - chemo went fine. The nurse commented that I was much more patient than she would have been. And my creatinine level is normal. I have 3 more appointments at my UCLA summer camp tomorrow but they won’t be difficult physically. Then Friday is a rest day, yay! Love, laurie

Journal entry by laurie adami

Not sure how many of you remember this movie or the nutty female neighbor who was on speed and was always vacuuming her house. That’s me this morning as the 100 mg of Prednisone from yesterday (and for the next 4 days) has kicked in. At 6 a.m. I got up and started laundry and took out the trash. I am not supposed to do any heavy exercise as they don’t want me to elevate my heart rate too much but I am going to take a walk. It’s beautiful and cool up here at the top of our lil mountain and I heard the owls again in the night, so beautiful.

Our boy got back from Fiji yesterday afternoon and what an adventure he had. It was a very rustic experience but he loved it. They did 8 scuba dives over 4 days and he got his advanced scuba certification. They also snorkeled and explored the island. He took loads of underwater photos and videos with the GoPro he bought before he left. So many beautiful creatures, blue starfish, red and all colors of the rainbow of fish, sharks, eels. He bought me a beautiful Fijian made bracelet which I am assigning as my good luck charm for this summer’s cancer healing.

Today I head back to UCLA for catheter flushing and dressing change, Neulasta shot to boost my white blood cell count for the next few weeks, more labs (checking the kidneys again) and a visit with Dr. de Vos which I will welcome. Tomorrow is a UCLA free day.

love, laurie 

Journal entry by laurie adami

I spent most of the afternoon at UCLA today. I had my catheter line flushed and the dressing changed, then I had more labs run, more extensive tests on my kidneys. The nurse, Imelda, actually got a vein on her first attempt so they didn’t need to access my port. She said she’s not like the other Imelda and isn’t really that in to shoes...

Then I waited to see Dr. de Vos. But instead of worrying about it, I started doing the suggestion that one of the commenters (Jane) suggested and I wrote down an A to Z gratitude list. I was planning to post it tonight but I just got back and it’s late for me so I will post my 26 gratitudes tomorrow. Gus and I had a bunch of errands to do and then grabbed dinner.

But the best news was that when I saw de Vos, he immediately commented that the big tumor in my neck was smaller vs when he saw me yesterday. Also, all the extra tests on my kidneys showed my kidneys are functioning normally. He also shared all the other results from my recent procedures - my brain mri was normal; my echocardiogram showed a normal heart and no calcification anywhere; and maybe most importantly of all, the SUVs in my PETscan (standard uptake values, sorry google it if you want to learn more), were only between 1 and 6, meaning I still have very indolent disease. Hopefully this will give me fewer side fix when I get my CAR-T cells. 

Tomorrow I have a “UCLA free day” and that will be my “U” gratitude. 

Love, laurie

Journal entry by laurie adami

A is for dried apricots, 6 at night is helping prevent the GI issues caused by Prednisome and the antinausea meds

B is for Ben, my life partner (July 16 is the 24th anniversary of when we met) who keeps taking care of me thru the ups and downs, always ready with a smile and a big hug and a kooky joke

C is for my creatinine level yesterday, hurray for strong kidneys, even after all this

D is for Sven de Vos, my hero who is committed to keeping me alive

E is for everyone in my local support network, getting me thru these weeks of procedures, coming to doc appointments with me, driving me to and fro, bringing love and food - Sarah, Amy, Betsy, Ellie, Fiona, Sarah, all the others offering to help. I get such great comfort from every outreach

F is for family, Ginger, Bruce, Charlie, and Bob, been here thru thick and thin these 12 years

G is for Gus, the son who always knows how to help me and gives me motivation every day to stay alive so I can see what I know will be his life of love, and giving compassion to others no matter what he chooses to do with his work. And maybe a grandchild...

H is for health insurance, I am grateful every day that I still have it even though I cannot work anymore

I is for I am still alive!

J is for the gorgeous jacaranda tree and giant eucalyptus trees that greet me every day out of my new bedroom window

K is for my friend, Kim, of 24 years, who with her daughter Bailey, arrived Monday evening bearing freezer packages of home made lasagna, chili, meatloaf, tortilla casserole and the most decadent chocolate dessert ever. Our freezer is stocked for all the nights I can’t cook and am in the hospital so the boys will have delicious food. I think they must have cooked for a week

L is for LLS who has invested over $40 million dollars in CAR-T over the last two decades including funding the first researcher, Karl June, at UPenn who made the first big breakthroughs

M is for being a mom, can’t believe I almost missed out, having Gus at 40

N is for the nurses

O is for the great horned owls that live in our trees and in the nature preserve behind our house. Listening to them calling to each other when I can’t sleep is so relaxing

P is for all the prayers and good wishes that are coming from everyone, scattered around their churches, synagogues and mosques and the many many prayer chains

Q is for all the questions I have been capable enough to ask to get me to survive 12 years to live to see CAR-T come along

R is for Ronda and her driving me to and fro my lymph node biopsy this week, pushing her way into the room where they did the biopsy and then nearly passing out as I was so afraid, I kept squeezing her hand harder and harder, cutting off her blood circulation. We go back almost 30 years

S is for my strength and stamina, a badass warrior as Claudia calls me

T is a simple gratitude for tomatoes in summer

U is for my UCLA free days today, Saturday, Sunday and Monday

V is for Vitamin D that has optimized my d level to a solid 80. I don’t remember the last time I had a cold, flu, or bronchitis, even with a son running in and out w germs

W is for water the beverage that has kept me hydrated and cleans the aftereffects of treatment out of my body

X is for Xarelto which has kept me clot free since my PEs and DVTs in 2006 and 2009.

Y is for yesterday’s great news

Z is for the last spot in the Zydelig trial Dr. de Vos got me into in 2011 that stabilized my lymphoma for 6 years and bridged a big gap

Happy weekends, love, laurie

Journal entry by laurie adami

Waking up in the canyons with all the birds this morning. Today is my last dose of Prednisone from my chemo this week, only 100 mgs to go. The energy boost came in helpful yesterday as I did another A-Z exercise. Gus assembled cd racks and I dug many many boxes of cds out of the garage and set up our music collection. Going to head to the market shortly and make the boys a special breakfast.

Easy week health wise this week. Catheter flush and dressing change on Tuesday. Took a bit of experimentation and missteps but I finally mastered the right combo of aquaguard bandages, Saran Wrap and taping things on with packing tape, finally in the routine of how to keep the large catheter dressing dry when I wash my hair and bathe.

This Friday, since I had my CVP chemo round this week, we will repeat the baseline scans. Hopefully, there will be enough shrinkage for me to carry on with the July plan. Chemo July 11-13 to make room in my body for the reinfusion of my genetically modified T-cells and check in Sunday, July 15 to the hospital. July 16, I get my cells back and then we wait, for cancer reduction and the side effects, should they, arise. The guess is that I will be in the hospital for 7-10 days.

Happy Sunday wherever you may be.

love, laurie

Journal entry by laurie adami

There is visible shrinkage in the masses in my neck, head, groin, eye, I am elated. I also don’t want to get ahead of myself as I have a critical part of my journey still to come but after almost a year of steady progression in my tumor masses, it’s delightful to see the opposite.

As you can tell from the timing of the post, I am also up before dawn again, beat the birds this morning. Hoping to have a soft landing coming down from the Prednisone today and tomorrow. 

I start prophylactic antibiotics for a week today just to keep me from picking up any side infections that could delay the finish of the CAR-T process. As it stands at the moment, assuming my team at UCLA and KITE/GILEAD are happy with disease reduction from the one shot chemo last week that we will see this Friday when we look at the scan, I will be in the hospital two weeks from today to receive my reenergized and reengineered modified T cells back. Time seemed to be passing so slowly these last several weeks but now I am seeing a light ahead of me in the tunnel.

Gus is all recovered from his jet lag and ready to start at UCLA Paramedic School. He will be in class for the month of July and then will have two 12 hour ambulance ride alongs when the academic program finishes. He will get his EMT certification at the conclusion of the program and then will be ready to participate in the George Washington University Student EMT program. He figures he will start working for the program in spring 2019 to allow him to acclimate to college life this fall without too much extra going on.

The timing of his July program is going to work out great for me as he can pop in and visit at the end of his class day as the UCLA paramedic school is nearby the hospital where I will be ensconced for a time.

Thanks for all the support, it’s greatly appreciated.

Love, Laurie

Journal entry by laurie adami

Last night, I turned off the light at 10 pm and remarkably, when I woke up this morning,  it was 6 a.m. That was the first uninterrupted sleep I have had over the last few months and likely since we moved to our new house. 

Today was a low key day, just my catheters needed to be flushed and the bandages changed at UCLA.

I am coming down to the home stretch, now I just need to figure out what I should pack for my hospital stay and how many “UCLA Zuma-5, Team de Vos” t shirts I need to print up for the research trial crew that will surround me on July 16 when I get my cells back. I do know that Sven de Vos is a lanky, 6’8”, so I need to get him extra tall and extra skinny.

Slight change of plans, my baseline scan is happening Monday July 9, not this Friday, July 6.  Conditioning chemo is still taking place July 11-13. I have been in regular touch with Dr. de Vos the last several days and sent him a photo of the difference in my tumors, which he is very pleased about. Sunday, July 15, I check in the hospital and Monday, July 16, my brilliant T cells come back to me.

And breaking news, I have been up every day watching World Cup soccer. I had no idea how fun this is and since I have been at home and bored, I have a new interest.

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 sooth 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
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