Renal Cell Live!

Monday, May 17, 2010

Actually, Mr. Yuk Is My Enemy

I sent a message to Dr. G and Nurse Shari last night. I'd spent that truly miserable week with nausea and vomiting, though never so bad as when I was on Sutent, and had to finally give up on the sulfa drug rather than spend all my time in bed or the bathroom. Some of the nausea and stomach upset persisted until early Sunday morning, by which time I felt so rotten that I curled up in bed and stayed there quite late. When I got up I was still so woozy that I just couldn't face eating or taking my dose of Votrient, so I didn't take it.

Surprisingly, within a couple of hours my stomach had calmed, and the weird swallowing problem I've had for over a month had gone away. My appetite returned, and I was feeling pretty fabulous for the first time in a long time. It's funny how it's borne in on one, by the absence of symptoms, how quickly one can feel better - the misery becomes a distant memory in no time.

So, I thought I needed some advice from my medical professionals - should we consider lowering the Votrient dose? How much of this could be blamed on the nasty sulfa drug? Was it possible for symptoms to disappear so quickly, or was I just so relieved to feel better that I was hallucinating? Would they condone lowering the dose or would they want me to stick it out until my first scan in June?

I called Nurse Shari in midmorning as I'd not heard from her. Turns out Dr. G isn't due in until later today, but she was able to give me the following tidbits:
- The nausea and vomiting was almost without doubt due to the sulfa drug, as it's notorious for causing severe stomach distress. I should add it to my no-no list and forbid any doctor from giving it to me again (my inclination exactly, and thank goodness there was no hesitation on that decision)
- The remaining symptoms are probably due to the Votrient and she suspects we will reduce the dosage level. All I have to do is wait for Dr. G to arrive and have time to decide course of action with her, and they'll relay to me.

I really enjoy participating to this level in my own care - perhaps it's perverse in some people's view, but good heavens! I feel like I have some control over what's happening. Why persist in misery just because "that's what I was told to do"? That may have been the traditional approach to medical treatment ("Sit quietly and take the nice medicine, that's a good girl!") but I certainly have no use for it.

I am thrilled to report that, after several years, barn swallows have located one of the brackets Saint H placed on the internal fascia of the front porch. They are placing a careful array of mud pellets for a nest, right in view of the living room window. Cola is absolutely fascinated. Our house is becoming a handy roosting spot for the barn swallows; this morning I was serenaded by a throng of them waking up from roosting on the roof. A raucus symphony, indeed, but one of the most welcome sounds I can think of.

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  • My dad was just diagnosed with Stage IV Metastatic Clear Cell Renal Cell Carcinoma (whew that was a mouthful). They are starting him off on Sutent. Have you had any experience with this drug? Any advice I can pass on to him?

    By Blogger Liz, at 10:00 PM  

  • Liz,
    I was on Sutent for several months in 2005 and experienced internal bleeding (as well as 28% shrinkage in a very short time). I was in terrible physical shape at the time, though, so we may try Sutent again at some point. If you go back through some of my early posts, and if you click on the tag "side effects" you should find more information on my experience with Sutent. Others in my group have long experience with Sutent and have had good results, so don't judge all by my reports - everyone's experience with this disease and these drugs is quite individualized.

    Good luck!

    By Blogger rcclive, at 9:43 PM  

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