January 11, 2006
Treatment #10 Good and Bad
With the increase to 100% of the experimental drug the last treatment I have not been "up to par" for the two weeks proceeding this treatment Tuesday. The breaking out all over face and head could be tolerated, but I ended up with sore mouth and throat making eating difficult. That was the last straw. I called the clinic on Monday and flatly said I do not want another 100% of the experimental drug, call the doctor or whoever and let them know. When I arrived at the clinic yesterday I wondered how my demand would be met. Julie, the lady/girl who surpervises the program was there and we had a good conversation. I was surprised that my "demand" was accepted beyond my expectations. They eliminated it from this treatment and will start again next time at 50% for 2 treatments, then 75% to see if I can tolerate that, which I can. That's the good news. The bad lies in the misconception of how many treatments I will have to have. Last treatment I told Stacy, the NP, we may have to go more than 12 treatments and she insisted that the experimental program was 12 treatments and we would be done. Dr. Stephens had said the standard treatment is 12. Julie said that the experimental program would continue as long as I was receiving chemo treatments, like forever. The key, of course, is the next CT Scan which should be around Feb. 10-12. I really anticipate going a few more treatments so it will be no surprise if we have to do that. My mouth is feeling better already, throat still a bit sore. Oh, I forgot, my taste buds were also shot this past week. When you're cooking something with vinegar and can't smell it, somethings wrong. I'm also starting to taste again which does make eating a little easier and pleasant. Something else to watch just dawned on me this past week. Yes, you didn't lose your hair, but when was the last time you had to cut it? It appears my hair has stopped growing. When I wash my hair it still remains "greasy' like and combing it, there is no loose hair. Surely it won't fall out this late into treatment? No use worrying as you can't do anything about it. Also, to me not so good, I have not gained any more weight the last two treatments. I even pre-set the scale and was exactly right, 153 3/4. Still fatigue quickly and put up with my cold sensitivity. Thank God for the warm weather we're having now. Guess that's about it for now.
January 19, 2006
Meeting with the Doctor
I had a meeting with Dr. Stephens yesterday to update where we are and where we're going. Really nothing new to what was said, but I did confirm what I've learned over the past few weeks. The future will depend on what the next CT Scan shows and there was some debate over when that would be, but probably as I had guessed, around Feb. 10th or so. The three choices remain, that it's working and we should continue, we should look at a different combination of drugs, or we should stop. My bet is still on the first and I think the doctor feels that way too. If we do continue it will be at a reduced level that will keep me feeling good, maybe even helping my cold sensitivity. The experimental drug will be continued at a reduced level. I tried to get him to say what was on my liver and the size. He said he really doesn't like all the comparisons of size, like I had done saying the size of a pecan. He did say that it was a mass growing and the important thing is that it is shrinking. Of course, he gave me the "you're really doing fine" pep talk. His Nurse Practioner suggested that I drink 3 bottles of Ensure or Boost every day. A bit expensive at more than a dollar a bottle. The bottom line is I guess I should feel good that everything is progressing and making the doctor happy. It does bother me that as much as I try to probe, I get the feeling he is holding back something. I guess time will tell.
January 28, 2006
Experimental Drug Panitumumab Back at 50%
The end is near, hopefully. This treatment was very routine, experimental drug (Panitumumab) back at 50%. The new clinic was open and this was their second day, so they were a little disorganized, no cable tv yet, hanging magazine racks, coat hangers, clocks during treatment. This building is more than double the size of the hospital annex they were using and features PRIVATE ROOMS. I left with another doctors appointment for next Wed. I didn't know why. There was still debate on when to do the CT Scan. The clinic called Thursday with a surprise. They had set a CT Scan for Tuesday at 6:45 am. I thought it would be after the 12th treatment. Makes some sense seeing the Dr. on Wed. I hate that early hour. I am anxious to see what our progress is, so I won't have long to wait. The next post should be interesting. A final note not having to do with my treatment. My mother passed away Tues. night/Wed.morning. She was 2 months from her 99th birthday. Her quality of life had slipped quite a bit the past few months so it was somewhat of a blessing. I will always remember her as a great mother.