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So many chemos ... and a few other thoughts
Snufi, if you want to continue the chemo, you need to find an MD who will work with you. If you're near a large cancer center, see if they have a patient support person or ombudsman and tell that person what kind of oncologist you're looking for. Or if they have a face-to-face breast cancer support group, you might find people there who know of flexible providers.
It sounds like your reaction, if it was physical pain that made you so upset, may have been r/t to the neurotoxic side effects of the taxane. Is the "c" in your mix carboplatin? That also has the potential for neuropathy. You could try a chemo without that side effect - CMF (uh, cytotoxan, methotrexate and flourouracil, spelling may be wrong) has neither neurotoxicity nor cardiotoxicity, for example. It's an older regimen but is still prescribed and certainly has proved its efficacy. The newer chemo agents offer incremental improvements over CMF but generally also increase the side effects. People who've received CMF will tell you the nausea was bad but that's in part because back when they took it, the anti-nausea med choices were much more limited.
Back to the pain issue - if it was simply physical pain, there are many drug choices to treat that and since it's for a limited period of time, why not just dose up until you're halfway comfortable and get through? Was your plan for 4 or 6 TCH's? Even if you had to stay overnight for morphine or fentanyl, it might be an option. Have you seen a pain specialist for your fibromyalgia? They, or a palliative care specialist might be able to help.
In our area, we have only one oncologist who will work with people who do not want the standard chemo for any given cancer. They are out there but it may take some looking and networking to find them.
One more thing - are you taking a vitamin D supplement? Have you had your levels tested? I am reading more about Vitamin D levels and fibromyalgia. Sorry to run on like this but I seem to keep thinking about you ...
Can you tell us what you're thinking? Do you WANT chemo and are not pursuing it because you fear the reaction? Or are you skeptical about chemo's benefits and fearful of its long term effects and thus not really thinking you want/need it to begin with?
Debbie Laxague
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