January 11, 2007
Cat Scan #8
With the usual concern over my cat scan results I am happy to report that the scan showed no growth and everything holding stable. I am also happy to say that I got the doctor to stick around and answer a few questions. I think the secret is to put questions on a piece of paper and pull that out with the comment of having a few questions. I asked him why he wanted to give me that 3 month break I didn't want and it was simply a kind of good will offer he makes to everyone who has gone through chemo and assumes you might need a break. I talked to him about Wendy in Canada (wendysbattle.com) and her referring to a CEA score. I evidently had that way back in the beginning and not since so he ordered that at my next treatment. It's a blood test and measures antigens if I remember what he said. I asked him his best educated guess would be as to how long the anti-bodies would be effective. The average is a year, which I am approaching, but also said only a few hundred have gone this long, I assume with the experimental drug. I guess that makes me a good study patient. We discussed my reaction, the breaking out. I told him I had made the comment that I hadn't been breaking out quite as bad and sure enough after you say that two treatments back I had a severe reaction. In addition to the normal forehead, it covered my nose, cheeks, chin, neck front and back, some in my scalp and on my back. That really surprised him, as it did me. So far, last weeks treatment is not making it worse and there is some improvement. Still, as agravating as it is, I can put up with it knowing it is doing what it's supposed to for my liver. I even talked a little with him as to what would happen if more chemo is needed and I didn't do it. Best I make no comment on that because you can guess the answer. I continue to run into people who have had chemo, or a friend or relative who went through it and I am so grateful that my experience was a "piece of cake" in comparison. i shudder at the horror stories I hear and many of them are using the same doctor and clinic as me. So, we rest easier for 3 more months as the battle continues and we wait for cat scan #9. Good health to all of you.
January 31, 2007
A New Measurement
I would advise you in advance that I'm not sure what I'm going to say, so I may be rambling a bit. I've been battling this cancer thng for about 18 months now. I've asked a lot of questions, got answers to some and a bunch of I don't knows. I keep asking questions and keep an open mind to find out anything I can. Well, in the past few weeks I've discovered some things I should have know and feel a little stupid for not knowing. First, I checked the website for Avastin, my main drug now, and found an improved site from a previous visit. I learned some things about Avastin I should have known. That was what I intended to write about, but I'm still checking on something so will put that off until next time. I've also become aware of the CEA blood test, mainly with thanks to WendysBattle web page. My treatment of 2 weeks ago included blood for that test. Since that was give my 6 viles of blood for the drug study, I asked Julie what all of them were. Of course I didn't understand all of them and was surprised that CEA was one of them, all this time. After thinking about it, I called and asked if I could see all of those results since the beginning. Today at treatment I got more than I asked for. Nothing from the blood the clinic took, but I had pages and pages of all the blood work that has been done since August of 2005. Unfortunately, the Nurse Practioner could not give me as complete an explanation as I would like to have. CEA is a tumor marker, for a short explanation. My baseline is 5. The first test, before chemo, was 536.5. I couldn't believe that was correct, but I guess that shows how bad off I was at the beginning. It quickly dropped to 7.3, then 3.6, 3.1, 2.9, and then started rising to 3.7, 6.2, and this month 6.0. There doesn't seem to be any concern that it has risen some, so I'm a little in the dark on really what I've learned. I really need an explanation from the doctor. Maybe this is another case of a little knowledge is dangerous. As I learn more I'll pass it on. As for my routine treatments, my skin problem has been pretty much confined to my forehead. Not too bad although some of the larger spots get sore. It doesn't help if I pick at them like some teenager and their pimples. In closing, a bit of humor. Although my taste buds are close to normal there are some obvious changes, no hot spices for one, no big craving for sweets (probably good) and one goofy one. On the few occasions when I decide to eat some liver it has become as tasty as eating a steak. I don't think buying liver at Walmart makes it any better than it's been for years. Last time I ate 3/4 pound of it and could have eaten more. So, come and visit me and I'll fix you a delicious liver and onions dinner. Just kidding. Will close now with a wish that you stay warm and stay healthy.