Today was a good day at Jeff. We walked down and had time for Linda to get her Starbucks coffee. First up was the lab tests but the nurse had a little trouble getting blood from the first port hole and had to try the second hole to be successful. Each time a port hole is accessed, its like getting a needle. We then had a meeting with Dr. Littman and she was able to explain the remoteness of the harsh side effects of Mighty Mouse and that they will be monitoring me closely or rather I should be notifying them whenever I have the beginnings of an adverse reaction.
Linda was looking back at our original protocol info from Hopkins and their 3rd option was a new trial that included Mighty Mouse, Irinotecan (the second and harshest drug in the Folfirinox) and a third drug that Littman is considering I do in combination with Gimcitabine after the Mighty Mouse protocol. The Hopkins protocol would likely have been quite harsh and hard for us to imagine with their lack of patient support and no advance knowledge of the side effects and adverse reactions of this brand new combination (which is mainly why we rejected it.)
Littman is planning on three cycles for Mighty Mouse because the adverse reactions often get progressively worse and the 4th cycle apparently is when bad results are more likely to happen. I would then have a Scan so my progress or lack thereof could be determined. Littman has had two pan can patients similar to me who have had remarkable success with Mighty Mouse but she has had no other samplings.
We set up dates for additional treatments: tomorrow afternoon for a whtie blood cell shot (neulasta), 12/8 for interim lab tests, 12/19 lab tests, Littman, and chemo, 12/20 neulasta, 12/27 Sandostatin needle for diarrhea control.
After all of the above, I actually received the chemo which only took about 5 minutes and was adminstered directly and slowly by the nurse into the port. Fortunately, I had no bad reactions. Other supportive drugs were administered as well as 2 hours worth of liquid to help fend off dehydration.
I left feeling fine and since I was going by my old office, I stopped up to say hello. It's funny how they still remain secretive as some people knew about my blog and some didn't and some knew about Rachel's wedding in the NY Times and some didn't. Since I've been open about my illness and tried not to be secretive, I wonder what the thinking is for those who limit what they share that I send them. It's not that big an office. Anyway, it was nice to see some old friends and co-workers but Amos was encouraging me to get home. I did manage to pick up some regular size 5 Guys french fries which is presumably 620 calories. The large size fries I believe is 1440 calories. I also bought a piece of strawberry shortcake, not from Five Guys.
The weather was so nice that even though it was after 5:00 and dark, I put on shorts and went for about a 4 mile bike ride on the trail near my house. It was great to be biking in shorts, something I hadn't done for months. Mostly lately, I've felt a little colder than I normally would feel because I have no fat on my model holocaustal body to keep me warm. But tonight I felt like the old days and it was fun.
Elkan - late Monday night
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