Round 8

I figure crusing at 31,000 feet over Bangor heading to London is a good time to update the blog. I am on Round 8 day 4. Since my CA-19 numbers have been going up slightly, I decided to get the normal chemotherapy treatment and not cut out the oxaliplatin which gives me the bad cold sensitivity. The last time I saw my oncologist (and my numbers were still trending down) I asked him if my prognosis has changed. He said no. Mom asked a much better question. How well am I doing when compared to other people going through the same thing. He said very well. He said I’m handling the chemo remarkably well. That was good to hear.

He said if/when this treatment is not doing as well, there’s another treatment with only 2 drugs and none of the side effects as what I am on now. The problem is I would have to have it done every 8 days. That would put a crimp in my travels. He said that there hasn’t been any head to head comparisons of the two treatments, but says they appear to be equally good. Why they started me on one instead of the other I’m not sure, but we’ll keep on this treatment until it is ineffective. I had a little more peripheral neuropathy this time then I remember. Anytime I wash my hands my fingers start tingling. Yesterday, for the first time, I had a tingling on the right side of my head that started at the back and progressed to the front. Only lasted a few minutes but felt very strange.

The other thing to note is he said he’s been calling around to see if there are any clinical trials that might benefit me. This is something I don’t understand and asked Dr. Thomas. The system is set up for us to find the right clinical trials. Why don’t they have a registry where I can upload my case along with known mutations, then people doing the research can look up the patients that fit their research?

This is a really long day. Got to the airport at 0800. Flight was on time and uneventful (as they should be). Got to Atlanta around 1115 and sat around until our flight at 1720. Up until now, I have been super tired even though I slept well last night. Now for some reason I’m wide awake.