Example of a Conversation with My Oncologist

A 15-minute phone check-in, after three weeks of taking five Xeloda pills instead of four:

Me: "I think I need to go up from five to six. My fingers still aren't cracking, or my feet. I feel about the same, in terms of bones and the injured shoulder. Dr. R. agrees. (Dr. R is my trusted advisor/consultant doctor, not an oncologist per se but a practicing doctor who knows more about cancer treatments than 99 percent of the oncologists out there, because he constantly researches it and consults on it and has an open mind instead of a closed mind).

Oncologist: "Yes, we are in agreement. Up it to six for the next three weeks, then have another blood test. The test results will tell us if it has started to work. If it's not working by then, we drop Xeloda and change to something else."

Me: "Couldn't we go up to seven pills and see if that might do the trick?"

Him: "No. If it doesn't work at six, it's never going to work."

Me: "During my last consult with Dr. R. (who my oncologist knows very well and gives a grudging respect about some things but not about other things), he told me that according to my height and weight, etc. my optimal dose of Xeloda could be as much as 8 pills a day."

Him: "He's wrong. That's what you get from books, but in reality YOU cannot go beyond six pills. It won't work for you at seven if it isn't working by six."

Me: "You just told me that we can't go by a generalization in a book. By the same token, how can you go by a generalization based on your personal experience as an oncologist? If every woman is unique, if no treatment has the exact same effect on every single woman, then how can you be so sure, as in 100 percent sure, that seven pills wouldn't work for me? Maybe I would be the one out of a hundred or out of a thousand. Why not just try it, if it comes to that? I say this because I know that when you refer to 'other treatments,' you are talking about all-out heavy duty chemo or hormone blockers, and I don't know if I can bring myself to do any of those. So I need to make absolutely sure that Xeloda won't work, before I consider anything else."

Him (in a flat, curt, biting, annoyed tone of voice): "You can do whatever you want."

Me (after a brief, livid pause): "Yes, I know I can do whatever I want. But I was trying to have an exchange with you about what I think, as well as about what you think."

Him: "Let's just see what happens with six, and if it doesn't work we'll sit down in three weeks for a long face-to-face, and discuss numerous options, in more depth."

Me: "Alright. One more thing: Are you open to including discussion of alternative treatments, if Xeloda doesn't work?"

Him: "To an extent. I embrace some and endorse others. We can certainly discuss those, too."

Me: "What are some of the alternatives you embrace?"

Him: "That's a longer conversation, but . . . certain Chinese herbs, homeopathy at times, vitamin supplements...".

Me: "What do you think about cannabis?"

Him: "As a cancer treatment? I am aware of the research on it, but I think there are many other alternative treatments that are better. I see cannabis as an interesting curiosity."

Me: "Ah. Okay, well, I'll see you in three weeks, and hopefully when we meet, it will be to celebrate the fact that the Xeloda is working."

Him: "Yes, let's hope for that."

***

So...that's another snippet from my New World Order.

 

Comments

[harlan lewps]

You want your fingers and feet to crack?

[John Underwood]

Doctors seem to often have difficulty with the concept of working "with" a patient. I still remember when Scott "fired" his Doctor. I was not happy he had to go through that stressful experience, but I have to admit that when I found myself alone I laughed out loud and did a little victory jig.

[Rich66]

"a practicing doctor who knows more about cancer treatments than 99 percent of the oncologists out there, because he constantly researches it and consults on it and has an open mind instead of a closed mind)."

Ha! Love that, understand that..and seek that. I don't have the research handy but I believe there are ways to see how much 5FU (what xeloda turns into) actually reaches your blood stream and presumably the tumor. Lower, more frequent metronomic doses might be worth considering too..as well as combining with hormonal therapies. For more fun, explore Xeloda/capecitabine options here: http://her2support.org/vbulletin/showthread.php?t=43474