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I was wondering how many of you have had the same experience as I have? I have gone to the ONC. and mentioned a symptom. The ONC. ignores it, or acts as if they have never heard of it before.
THEN, I go online, search side-effects of treatment/medication - and sure enough - the symptom is listed.
What I usually do is to print out the information and take it to the ONC. THEN I am (usually) told that the ONC. didn't know the information.
Has this happened to anyone else, here? Are we supposed to educate our Drs.? I don't mind, but not everyone can/knows to do this.
If it weren't for the internet, we wouldn't know that the "symptoms" are just a side-effect, and not something new to be worried about. BUT, the Drs. need to be aware of the possible side-effects in order to plan our treatment. And if a side-effect is troublesome, a change in treatment/medication MAY be necessary.
I guess that the patient needs to be really involved in their treatment regime.
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