Wednesday, September 28, 2011

Vacation week

The bottom line
The Regorafinib side effects rank high enough on the debilitating side-effect scale they're reducing my dose for the next round. While I'm disappointed I won't get the full one-two punch of its cancer-fighting properties, a balance between treatment and being able to function is paramount.

I have to agree. Quite honestly, some days I just want to cry.

Appointment update
Yesterday morning, when I woke feeling unwell, bloated and blistered, I thought the timing of my appointment in Hamilton was ideal. I knew Dr. H would check me out throughly, identify any problems and correct any major medical maladies.

I went down the list of side effects I'm experiencing, and talked about the bloating, cramping and pain I'm  experiencing in my abdomen. I also drew attention to the shaky, spaced-out, generally unwell sensations I regularly feel - and had in abundance yesterday morning. We wondered if the Regorafinib was affecting my blood sugar levels or whether these symptoms are a side effect of the Dexamethasone, which I'm now off.

The lab results revealed my blood sugar levels are fine, as is my potassium and liver function. In fact, all my lab levels are okay except my lipase (pancreas function), which is a little high. The pancreas processes drugs for the body, so it could be protesting all the different meds I've been taking. Perhaps it will settle down. Regardless, I know my next blood work, and all the subsequent ones, will continue to check for any changes.

Speaking of blood work, the study criteria changed and I now need weekly blood tests to check my liver function - and unfortunately, they have to be in Hamilton. I buried my head in my blistered, sore hands at the news and then bucked up. Even if it means figuring out time off work and driving three hours for a 10-minute blood test once a week, I will do what I need to do to be part of this clinical trial. I'm placing my hope in this drug and I need to do whatever is necessary.

Dr. H's biggest concern was my hands and feet. The debilitating aspect of the blisters isn't acceptable for the study protocol. He also seemed very interested my fingers are swollen and the skin has thickened into callouses (in addition to the blisters in the inner joints). This phenomenon means I can't feel the tips of three of my fingers on each hand, which could be dangerous if I'm not careful. Angie was concerned this side effects was neuropathy that could be permanent, but Dr. H assured us it's a temporary side effect while I'm on the drug.

While my hand and foot problems are a pain and somewhat painful, they're more of an inconvenience. When I think about all the side effects I have and could experience, it could be so much worse.

Now, my abdominal issues are a bigger concern for me, even though the doc didn't seem to be worried at all. He didn't hear any fluid in my abdomen (and I had zero drainage again yesterday) and my breathing is clear. Perhaps because I have ovarian cancer and my abdomen is full of those fluid-filled cysts, the Regorafib is attacking them, causing them pain and making them explode. That would be an acceptable source of the pain - dead cancer cells.

Of course, my lack of bowel regularity (although I have been going sporadically) contributes to the feelings of discomfort. I'm also really bloated. My throat is balking at the thought of eating solid food once again and uncomfortable gas rolls through my belly regularly. If I could get the abdominal issues back under control, I'm sure I'd feel so much better.

I mentioned in a previous blog, the big gush of fluid that drained on Monday. It was quite disguisting, full of a white, mucous substance. I drained 200 mL+ and now all fluid production seems to have stopped again. I'm almost convinced a cyst burst and its revolting contents came gushing out, but of course, that can't be confirmed. Maybe it's wishful thinking, but that's the hopeful explanation I'm adopting.

Now it's vacation week from the drug. Today is the second day I didn't pop the four pills after my low-fat breakfast. Hopefully, the side effects will quickly subside. I have a wedding this weekend and I'm really looking forward to it. Hopefully I can actually put on some dancing shoes (okay, probably slippers) and celebrate the joyous occasion.

Tina

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