Last week was my "off week" from Xeloda. This time, the redness, discoloration, and pain in my hands & feet actually lessened somewhat. This was a welcome respite! I feel like perhaps I can stay on this current dosage schedule. Dr. Green had said that if it got to be too much, she would lower my dose a little. I am not going to ask for that, since I feel like I can tolerate this level of side effects. One week on, one week off, and if the off week it gets better, then I'm ok.
On the down side, my headaches (that we think are caused by the Avastin) have become more frequent. I've had 3 in the past week and a half -- this is really cramping my style! It's not like me to stay in bed or on the sofa all day, but that's what I have to do. The experiment of trying Inderal (a blood pressure medicine) was only partially-effective. Dr. Green had prescribed it with directions to take one pill on the day before my Avastin infusion, then one each day afterward for a total of 5 doses. I still got a headache, but it wasn't severe enough to put me in bed. The most recent headache, a few days ago, started to rev up in the evening -- an evening when that day I had not done much but sit on the sofa and watch football with the family (a rare day indeed!) I tried taking 2 extra-strengh Tylenols to try and stave off the headache. I went to bed with the headache. I woke up with the headache, which was even more severe than the previous night, and so I knew it wasn't going to be good. My old, old stash of prescription pain meds was finally dwindling to just a few pills. I took a single Percocet which in the past has worked well. No such luck. Four to five hours later, I took another Percocet. Still nothing. I hesitated on taking it in the first place, because I've been instructed by my doctor to avoid aspirin and NSAIDs. Percocet contains aspirin, but I figured one or two wouldn't kill me. I was desperate, after all. The only drug left in my stash (leftovers from various surgeries from 4+ years ago -- biopsies, mastectomy, reconstruction, c-sections) besides the few Percocets was Vicodin from xx years ago. It was so old, I'm not even going to say how old it was! I feel the need to say here that none of the prescriptions in my stash had been refilled -- they were all the originals prescribed by my surgeons immediately post-op. I am certainly no pill-popper! Anyway, I did resort to taking the old Vicodin, which also did not work. I know, I know, I should definitely not have taken any prescriptions drugs that old. As I said, I was desperate and didn't want to visit the hospital. I thought well maybe I should try a Phenergan suppository after a couple of hours of the Vicodin not working, and although it knocked me out -- well actually all of these things knocked me out for a time and I was sofa- or bed-bound the entire day -- it never took the headache completely away, but did diminish it. Amazingly, after a day of mostly sleeping, I was still able to sleep through the night. The next morning I felt a little better, and by the end of the following day, the headache finally completely abated. It is definitely time to discuss the headache issue again with Dr. Green.
Additionally, the FDA just recently made a decision regarding the use of Avastin for breast cancer patients: the FDA removed Avastin from the list of approved drugs to treat breast cancer. They actually had originally fast-tracked it for approval a couple of years ago, but now they've changed their mind and are fast-tracking its disapproval. Or something like that. The reason was that studies have shown the side effects of the drug outweigh its benefits, and that the cost was too high in relation to the drug's effects. I read the decision, and re-read the studies, and I have to say, it scares me. Avastin scares me. When I called Dr. Green to ask what direction my treatment will take now that the FDA has un-approved Avastin, I was told that patients who are on it and responding well to it may continue to take it. Ugh. OK. If you say so.
Although I am a relatively healthy woman (ha ha), says my oncologist, I still worry about what may happen inside, where I can't see/monitor. I know that the Avastin is responsible for my mild nosebleeding, gum bleeding and rectal bleeding ... sooooo what's going on inside? I've read that long plane trips can cause dvt's (blood clots in legs) so if my vascular system is being compromised, what, if anything, will happen when I fly to Hawaii in March? Will the family vacation (of a lifetime!) be ruined by something to do with my health? I sure hope not! I know, I worry too much.
So tomorrow, I am scheduled to have my next Avastin infusion, then I will see Dr. Green. When she prescribed me a fresh bottle of pain med (a LIFETIME supply, I might add!) she also asked that I make an appointment so we can discuss the headache/Avastin issue, which I am more than willing to discuss. Looking forward to dropping the kids off at school, driving through Burger King for my usual Cini-Mini's and a large decaf, with extra creams! Don't worry, my health monitor friends, I only have this breakfast when we go to MD Anderson, which is every 3 weeks as of now! I usually have 2-3 donuts ... just kidding! But seriously, having this breakfast seems to help the nurses get my IV started on the first try. No kidding, when I skipped BK, it took 5 attempts. So, BK it is, every MDA infusion day! Also looking forward to a peaceful day with just me and Danny. Strange that I consider a day with at least 2 needlesticks and an infusion of poison into my veins as a peaceful day.
Attaching some photos of my hands and feet, at their very worst so far, to try out the photo option here on the blog. I should probably replace that old pic of me, too, but that will have to wait until another day. Danny thinks I need to add one of me @ Christmas time, so people can see that aside from my hands and feet, I really do look like a normal human, so OK. Anyway the hands and feet pics are not today, but some time last week when I thought, I gotta get a shot of this. I think they're some pretty weird side effects. Makes you wanna say "Ewwwww!"
Thanks for reading ... until next time.
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