From my experiences over the last few days, I'm learning this clinical trial may provide a bit of a bumpy ride. I've got side effects I'm trying to learn to figure out and manage. Unfortunately, I have no idea if they'll get worse or better, and there's always the chance more are lurking just around the corner.
The biggest side effect from the Regorafinib seems to be my poor hands and feet. I've now developed painful blisters on the top inside joints of six fingers and my two big toes. I also have a terrible rash spreading from those areas and down the sides of my feet. The surrounding area is red and inflammed, making it difficult to walk normally and compromising my ability to do some actions. I'm learning to ask for help and adapt.
Luckily, when I was in the cancer centre yesterday giving my last blood draw for the interaction portion of the study, I ran into my nurse and mentioned my poor apendages. She brought me up to clinic and Dr. H recommended a cream that should help. The operative word is should. It isn't working quickly, but it does provide some relief.
She also mentioned the other three participants came down with a red, itchy body rash on day 15 of the study. Even the man who was in the centre with me on Monday and is on the same schedule as I, woke with it yesterday morning. With the warning on board, I quickly assessed the rash situation this morning (day 17) to find none.
My nurse actually wondered if the Dexamethasone (a steroid) I've been taking for my stomach woes may stave off the rash. One of the prescribed treatments, once the affliction appears, is the steroid Prednisone. So perhaps the drug I've been complaining about will save me from a nasty, little side effect. I'm not out of the woods yet, but I'm keeping my (sore) fingers crossed.
To top it off, I think I had a reaction to the diabetic drug on Tuesday. I guess with the Regorafinib in my system, my body processed the Avandia differently.
On Tuesday morning, I ate my required low-fat breakfast before taking my clinical trial drug. Then we hopped in the car for the trek to Hamilton. During the drive, I noticed my hunger increasing, but told myself we'd get some food when I was done giving blood. By the time I got a sandwich (I needed substantial food at this point) at 10:30 a.m., I felt as though my stomach was eating myself. I was shaky, jittery, scattered and irritable. I felt I was acting crazy, knew it, yet was trying to keep it together.
By the time I started eating, I felt I was capable of eating my hand, I couldn't shove the sandwich in quickly enough. Half a roast beef, cheese and onion sandwich, and a chocolate croissant later and I felt better.
A couple of hours later, the shakes, weakness and a headache started again. Cheese, crackers and juice joined me beside my computer as I worked to boost my blood sugar again. Dinner brought a slightly less instense version of the jitters.
Of course, as soon as the symptoms started, I consulted my sister, the registered dietician, via my BlackBerry and she said it sounded like a diabetic-type reaction and told me, "Keep eating all day." Yes, ma'am.
During my brief meeting with my nurse yesterday, I explained these side effects and even gave her an itemized list for my file. I'm nothing if not thorough.
The other new casualty of the Regorafinib is my voice, which comes and goes. Apparently, the others have it too so it's not unique; just annoying.
My attitude today is "I will do what I can." I'm at work (and wearing soft slippers whenever I'm at my desk to protect my feel) and luckily typing doesn't hurt my fingers. I'll be slower writing, working with paper, walking or doing almost anything else with my hands, but that's okay.
And while my current situation is annoying and painful, it could be worse. My goal today is to try to be positive. There are lots of good things in my life too on which I need to focus.
Tina
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