September 9, 2020
“Two all beef patties special sauce lettuce cheese pickles onions on a sesame seed bun.”
I pretty much adhere to a plant based diet. Fish and chicken will find their way onto my plate for additional protein which I must stay aware of as it tends to drop easily according to my bloodwork. But red meat appears rarely on my menu. I don’t have a problem making it for my knight in shining armor and I don’t have a problem saying no to the aroma or the flavor. Drive through fast food however occurs only when there are no other options and I try very hard to make sure there are other options. Imagine my surprise when I had a craving, and I mean a CRAVING yesterday for a Big Mac, a dietary delight I haven’t ingested in over thirty years. The experience was delightful even if I only ate half of it. I’ve decided it’s all about the special sauce which squishes into the melted cheese on the hamburger patty which squishes onto the sesame seed bun with just a hint of pickle. Suffice it to say that my craving was well rewarded.
I passed all the pre-screening tests for clinical trial DS-8201a and on September 1, I received my first dose. For those in the Lung Cancer community, you can refer to the DESTINY-Lung01 interim results that were presented at ASCO 2020, pretty exciting findings for those with HER2 metastatic NSCLC. No pre-meds are given with the first dose which runs for ninety minutes followed by a blood draw and then three to five hours later, a final blood draw. Blood is held in high esteem as eleven tubes were drawn before the excitement could begin and I found myself wishing for a glass of orange juice and a cookie as I left the lab to proceed with my ten hour day. I left tired but encouraged as I didn’t experience any infusion reactions and other than the long day, all went well.
Dr. Tejas Patil is my oncologist for this trial. He is quite brilliant and I am not shy in asking him questions which he spends time answering and explaining with hand drawn pictures and study printouts he shares with me. Oh yes, we are getting along famously. I’m also happy to report that Candice (PA), Nikki (trial coordinator) and Dana (Dr. Camidge’s nurse) are following me with this trial as well so there is needed and appreciated consistency and concerted care.
On day two I noticed some nausea and fatigue, and with each subsequent day the nausea and fatigue increased until I was having a very difficult time eating, drinking and staying awake. I tried all my magic, acupuncture, ginger, more ginger, THC and eventually Compazine which barely took the edge off. Yesterday, five pounds down and fairly miserable, I had an appointment for more bloodwork and a quick appointment with Candice who ordered a liter of IV fluids, dex and Kytril (antiemetic) and on the way home, the CRAVING hit with a vengeance.
“Honey, I need a Big Mac!”
“NOPE! Like I really need one!”
I could barely get home before I opened the bag.
I can go back for more IV fluids if needed and I have an Rx for Kytril which I took again this morning. The nausea is low grade right now and is a very common side effect of this drug. Everyone responds differently but the info on the patient sites for this drug are full of antidotes and stories, I am in good company and far from unusual. I’m not sure if Big Mac’s will be added on a regular basis, I might branch out to an occasional Whopper or Bud’s has a pretty spectacular burger I’m told.
Let’s just say, nothing is off the table.
For your throwback viewing pleasure 🙂
P.S. – SURVIVEiT fundraising update:
The Indiegogo and private donation campaign was a great success! Over $41,477.00 to date to help launch the Cancer COPiLOT. If you would still like to make a donation, you can visit our website: www.surviveit.org.
I was also asked to write a guest blog about my experience participating in a clinical trial during the pandemic. Here is the link: https://www.surviveit.org/newsroom/bending-without-breaking-cancer-covid-19-navigating-now/