Renal Cell Live!

Wednesday, May 30, 2007

End of The Idyll

Tomorrow I go back on Nexavar, at a quarter dose. As my friend Swanknitter commented in an email, "I am so sorry to hear about your hands and feet. I can't imagine how horrible this must be especially when the culprit drug is otherwise working on the tumors." It's an uncomfortable balance - I've enjoyed being off the meds and have especially enjoyed being able to walk about again, but I'm terrified silly of what advances the mad tumor cells might be making in absence of the meds. It's worse that we just don't have enough data to know whether a hiatus from the drug is good or bad in the long run. What risks am I taking here?

Another interesting sidelight of my Nexavar vacation: I'm still taking my blood pressure meds, of course, along with all my other meds. Right now I'm dealing with low blood pressure rather than controlling high blood pressure, since it's not being artificially elevated by Nexavar. I don't feel fatigued, I feel lethargic!

An email to Dr G confirmed hand/foot's progression, which I've not seen described elsewhere: First, I develop what I would call a "wet blister", where the skin puffs and there appears to be a liquid fill underneath. Then, the wet blister hardens and thickens into a callous. Then the soft skin ruptures at the edge of the callous, followed by an ooze of thick yellowish material. Finally, the callous softens and sloughs off. Definitely not pretty but at least I know the process is normal now. And, oddly enough, my thumbs have never "progressed" beyond the callous stage.

Is it painful? Yes and no - sometimes it just feels weird, like the nerves under the callous are tingling and pushing against the callous from the inside out. Other times it's quite painful, with an almost burning intensity. When the skin is getting ready to rupture it itches like the devil. Go figure.

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