We have started!
We went to Fox Chase on Wed., Mar 12 to begin the clinical trial. We were both excited and anxious.
Dr. Denlinger met with us and made sure we were ready to start. That meant us as well as the Fox Chase team. Lynn signed lots of papers required by the trial sponsor. Then we spent some time with Dr. Denlinger discussing the protocol, what to expect, etc.
The treatment plan for this trial is a series of 21 day cycles. Every day of the cycle, Lynn will take the inhibitor drug (a pill). On the first day and 8th day of each cycle, Lynn will get Cisplatin intravenously. All activities, including standard blood work, will be administered at Fox so they can immediately provide relevant samples, etc. to the trial sponsor (Eli Lilly).
March 12th felt like a 48 hour day. We arrived at 9:00am and spent the entire day under the guidance of the Fox Chase team. The team was really great. But there was so much going on during this first day that it seemed to take forever. One of the requirements of this first day – after taking the first pill, which occurred around noon – was to have blood draws every hour for the next 6 hours to determine the effect of the pill and chemo. In all, they took blood samples 10 times that day. It was a challenge for Lynn. With everything that went on that day, Lynn was pretty tired afterward. We stayed at a hotel near Fox Chase (thanks for help from Kyle Welsh) knowing we needed to be back the next day for more blood tests and other testing. Thursday was not as bad, but a difficult day since Lynn was still pretty tired and beaten down from the previous day. We traveled home on Thursday. We traveled back on Friday for further tests.
Through this initial stage and the following days, Lynn was getting more fatigued, listless, and nauseated. The question of whether this was worth it actually came up. The side effects of Cisplatin we knew. For Lynn it was mainly nausea but also fatigue. The side effects of the pill compounded the tiredness. But knowing Dr. Denlinger, we felt we could discuss Lynn’s concerns, which we did the following Wednesday while we were there for the second chemo treatment. Dr. Denlinger was quick to add more nausea meds and a steroid medication. They proved very beneficial. By this past Saturday, Lynn was feeling stronger, more active, and more like herself.
This week, beginning Wednesday, is an off week with respect to chemo. We are planning to take a trip to the beach in OC for time away and a chance to recover. Lynn will still take the pills each day, but it seems the added meds have helped with the side effects.
We are cautiously optimistic about this trial. We need to go through 2 complete cycles before we get an assessment of how Lynn is responding. We continue to do all the other things we can, like maintaining a very healthy diet, to stop the growth and move to a state of ‘stable’. That is our big hope.
Carl (for Lynn)