Journal

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

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

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

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

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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