If this isn’t a promising omen, I don’t know what is.
Have wonderful weekends and love you. Laurie
still on the upswing out here. Xxx
Back to reality, I saw de Vos yesterday. Gave him giant hugs, told him how much I loved him and appreciated him. He had been away for 2 weeks and he could not believe the improvement in me. My counts are all normal. my neutrophils are on the low side but he isn't at all concerned. I think I have my next clinical study pet scan next week but he will confirm the date. I can't feel any swelling anywhere. Where before there were 5 and 6 centimeter masses, now i feel tiny little stones! It's so amazing and I am so grateful. I of course had my list of questions for him and a suggestion for KITE. My mental state was seriously compromised from all my terrifying hallucinations and I told him the researchers need to develop a drug that can be administered if seizures start and the patient is a coma that will create positive imagery.
I have started sleeping better. I am reading books again, finding pleasure in little things. Ben told me at 5 am. this morning, there were a lot of fire engine sirens and a helicopter flying overhead, some sort of incident. It woke him up but I slept thru it. My body needs the rest after all it endured.
I still haven't started cooking, it seems too challenging at this point. We continue to eat the wonderful food friends have been bringing. I haven't gained any weight yet which i think concerns de vos a bit.
Ben shared a lot with me last night of his experiences seeing me in the ICU. The doctors told him at the time that if they sedated me with any more drugs, I would pass away. They had me right on the edge. How terrifying for ben but how amazing that they managed my crisis so well and brought me out. Ben was so fearful that I would be a brain dead vegetable when they brought me out. Thank the universe for our medical care. I think I am strong but no way would I have made it thru this without the amazing care I got at UCLA.
You are probably surprised at how much I am posting but I have all the bad times to make up for. I feel like a totally reborn person, can’t beliece it. It’s like the blinders have been taken off and I see everything w a sparkly eye.
Tomorrow I drive to neuro, Tuesday to De Vos. He will be blown away when he sees me and speaks to me. I can’t wait to share everything with this man who saved my life now 3 times.
Ben took me out driving today and I did fine. Started on small local roads, got on Ventura Blvd, then sepulveda then he told me to get on the freeway. I drove on 2 freeways! Starting tomorrow, I can drive myself to the neuro and then the onco. So happy people don’t need to drive me everywhere. I appreciate everyone’s help this last month.
i am not ready to drive at night yet so my friends taking me out to dinner still get to pick me up 😂
p.s. not ready to parallel park, I ran over the curb...
i wrote a 10 page poem a week or so ago and Ben read it this morning. Stream of wacky consciousness. He wants to use some of it as lyrics in his song. So grateful for my sweet husband. I fell in love all over. I am so lucky.
i have to thank the universe for the strength of my body. I never appreciated it before but after 7 challenging cancer treatments in 12 years w the car t being the most brutal I finally get how tough I am.
i also got a notice that my next PET CT is scheduled for Thursday, Oct 4 so we can see what is going on in my body. Prayers that day, happy dances, meditations, any good things you can send my way are so appreciated.
walked 3 miles on the treadmill this morning. My progress carries on. Xxxlaurie
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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