So I had my check-up with my MO today. My bloodwork and everything else looks good. I don't need more bloodwork for a month and I'll get a PET scan in another 9 weeks. All seemed good. Then we talked about the possibility for more chemo...
My MO wants to do a bit more research and will be calling me within a week. Many head and neck cancer patients receive TPF (docetaxel, cisplation, and 5 Fluorouracil) Chemotherapy, which consists of a 5 day infusion of those three drugs once a month, for three months, followed by radiation with continued doses of Cisplatin. Other head and neck cancer patients receive just the Cisplatin with radiation, which is what I did. The first treatment plan is better for advanced, aggressive cancers like the one I had, but requires a 9 week time frame before beginning radiation. My team agreed by the time I saw my RO that it was best to begin radiation right away. 9 weeks would have been too long to wait. The suggestion now is to tack on the 3 courses of TPF now that my radiation is finished. My MO does not have a lot of research data on that protocol, so she is currently talking to several other sources before she makes the final recommendation. The idea would be that this other course of treatment would kill any possible remaining cancer cell that is left now, once and for all. If I were to have another recurrence, that might just be the end of me. We want to hit this thing with everything we got, now, while any cancer that may still be remaining is microscopic and easy to kill.
That being said, I asked my MO how the side effects from those two other drugs compare to Cisplatin and what I'd have to look forward to. The answer was not very pleasant. In addition to the nausea and fatigue, from least to most worse (in my opinion) the three drugs would compound the chances of neuropathy and/or tinnitus, they would give me horrible diarrhea, they will cause radiation recall (bringing back the mouth sores, lack of saliva, and radiation burns), and all my hair would fall out. Given that information I don't know if I could handle going back on chemo. I almost think I could handle the radiation recall, but I don't want to lose my hair. Not only does the hair on your head fall out, but so does everywhere else....like your eyebrows and your eyelashes. I just don't think I could handle that.
I really don't know what I'm going to say if my MO suggests I should do it. I don't want a recurrence. I don't want to die prematurely. I don't want to have in my mind the constant fear that I didn't do everything in my power to fight this cancer. But.... I don't want to subject myself to such torture. I don't want to have to worry about missing work again or going out on disability. And most of all, I don't want to lose my hair.
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Hey Jen,
ReplyDeleteI'm sorry to hear about your hardship. Hang in there. You are in my prayers.
Love,
Martha
Girl, you're not thinking straight because you're scared and going through a lot. I say give it all you got. That's what I'm trying to do. If you don't do it now, it will be harder when you're older or you could die.
ReplyDeleteAnd stop caring about work so much, they don't care about you as much, so you gotta care about you the most.
Ha! Don't worry about hair. First of all, you could rock bald, you'd make it stylish. And I've got more than enough hair. I'd shave it and give it to you as a wig. Then you could try out curly for a while!
I know I don't know exactly what you're going through, but I do know what its like to have a potentially fatal disease that if it is not treated aggressively (and painfully), I'll die. Let me tell you, you would have constant fear if the doc suggests it and you say no.
Be strong. Be patient. But most of all, live with no regrets. That will make your decision.
Lots of love and sympathy your way.