Thursday, March 6, 2008

Visit with My Oncologist

Yesterday afternoon, I had an appointment with my oncologist, who wants to check in with me while I'm on Xeloda and Tykerb. I had several questions for him, which were, in no particular order: 1) adjusting my dose while on Xeloda; 2) what to do with the skin mets; 3) using melatonin for sleep; 4) his thinking about radiation; and 5) insurance approval for Xeloda and Tykerb.

Regarding Xeloda, he gave me permission to adjust my dose of Xeloda. His preference was for me to take it Mon to Fri and then off on the week-end (something about biochemical processes), but I told him that I am really enjoying my week off of it. So, for now he was happy with me trying to take only 5 Xeloda each day while I'm on it, instead of 6. He was fine with me skipping the last dose because of the mouth inflammation. He also mentioned something interesting: apparently, women in Europe are able to tolerate 8 or 10 Xeloda each day, while in the U.S., women seem to only tolerate 6 each day. Researchers aren't sure why, but are looking at environmental factors, such as our diet, or maybe what's in our water or environmental contaminants.

Regarding the skin mets, there were 2 or 3 small areas (i.e., a few mm long) that started to bleed a bit. They were around areas that were pretty dry, so he said to use a small bit of aloe vera gel to moisten it up. By moistening it up, we can keep them from getting larger. He definitely saw improvement - he last saw me on Feb 22, so he saw the improvement over a 12-day period on these meds. So, my eyes weren't deceiving me!!!

He didn't know much about melatonin so I mentioned to him the studies I found related to it. I posted about it last Friday. The thing I forgot to mention is that there are some studies, I think so far just done on rats, that show that melatonin stops breast cancer tumor growth. He wasn't able to suggest a dose. I started with 2mg a night (about 6 or 7 times more than is usually used physiologically) and it didn't seem to help. I went up to 4mg on Tues night and I couldn't even get to sleep! I went back to 2mg last night and slept for 4 hours straight! Yippee. I think I got up to another 3 hours the rest of the night, but I woke up a couple of times and stayed awake. I found some articles on the internet that show that one can take as many as 75mg/night without ill effects, other than feeling sleepy and drowsy. Another article said that elder insomniacs had better sleep with about 0.3mg. One site suggested 40-50mg/day if you are a cancer patient. So, I will monkey around with the dose and see what works. Liz, over at, told me that she uses 5mg/night and that works for her. My oncologist's nurse said that a 3mg dose works for her.

Regarding radiation, my oncologist thought that my reasoning was sound in terms of putting off radiation until I really need it. He said that if the meds seem to be working on the skin rash and the skin mets, then radiation (a one-shot, local deal) wouldn't be necessary. We also assume that if it's working on the skin, then it must be working throughout my body. Yippee! again! If we continue to see improvement, then once it's cleared up, I can go back to getting "pumped up"! Cool. It's kinda weird being half-filled.

He also said that insurance approved the Xeloda and Tykerb, without any extra say-so on his part. My thinking? That giving me Tykerb/Xeloda is cheaper than having it administered via IV, because not only do you have to pay for the meds, but also for the trained personnel giving the meds. Taking pills works for me! Better than having a port or having my arm/hand stuck with needles every so often!

So, yep, it was a good visit. I took my folks out to dinner to celebrate!


Carver said...

Hi Dee, I am glad your appointment went well. I hope that sleep will improve as you adjust doses. Take care, Carver

Dee said...

Thank you, Carver. I hope my sleep improves, too. Just reading about how lack of sleep and low melatonin may contribute to breast cancer is starting to make sleep a priority for me. Just got so used to only getting 5-6 hours a night. Hope you're doing well.