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Jay Lake
Date: 2013-06-11 04:52
Subject: [cancer] Yesterday's oncology consultation
Security: Public
Tags:cancer, family, health, personal, radiantlisa
Yesterday Lisa Costello, Dad and I met with one of the oncologists from my clinic. The topic of discussion was my response to the Regorafenib. I have been experiencing a number of side effects, including incipient mouth sores, a sore and swollen tongue, loss of appetite, emerging food aversions, lower GI disruption, disrupted sleep patterns, and hand-foot syndrome. We did some bloodwork beforehand which indicated largely normal blood chemistry, though my liver functions are trending poorly. Among other things, my bilirubin levels have doubled in the past month. The oncologist was unsure whether this was a function of my progressing tumors or a function of the Regorafenib, or both.

We discussed the extent of my side effects, and that I can expect them to get worse in the coming week. We have permission to go off the Regorafenib if any of this becomes unbearable. They thought I would see a plateau of side effects by the end of the second month.

Additionally, due to the mobility impairment from the hand-foot syndrome, I received the paperwork for a disabled parking permit. I need to pursue that with the DMV now, which should be simple enough.

I will be undergoing another round of bloodwork in two weeks, and seeing the oncologist at that time. Followup scan won't be until the second half of July.

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Kari Sperring
User: la_marquise_de_
Date: 2013-06-11 13:03 (UTC)
Subject: (no subject)
Much, much love.
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Kevin Standlee
User: kevin_standlee
Date: 2013-06-11 14:13 (UTC)
Subject: (no subject)
We had to get my wife's late father a disabled parking permit when he fell and cracked his hip. It was a pretty straightforward process. Mind you, the office in Stayton isn't very busy compared to the one to which you'll probably be going.
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asakiyume: Aquaman is sad
User: asakiyume
Date: 2013-06-11 14:14 (UTC)
Subject: (no subject)
Keyword:Aquaman is sad
What are your thoughts right now on the trade-offs between being on and off the Regorafenib? (... um, only if you feel like talking about it, obviously).
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Jay Lake
User: jaylake
Date: 2013-06-11 14:17 (UTC)
I don't know yet. Depends on how bad the side effects get. This hand-foot stuff is really terrible.
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asakiyume: dewdrop
User: asakiyume
Date: 2013-06-11 14:37 (UTC)
Subject: Re:
Yeah. I want your time to be as long--but also as pleasant--as possible. It's pretty insane to talk about a "sweet spot" given the components here, but, well, the best balance.
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User: joycemocha
Date: 2013-06-11 15:50 (UTC)
Subject: Re:
Nods in agreement. My hand-foot stuff is arthritic, but it's bad enough with regard to pain and mobility. I can't imagine having it coming on as hard and aggressively as yours is with the med. At the moment I have issues with one thumb, and it's amazing to see the degree to which that impacts my ability to do things. The foot problems a few years ago were truly excruciating.

I hope you can find a good balance with it. Hugs. I'd like you to be around as long as possible, too.
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User: lindadee
Date: 2013-06-11 23:21 (UTC)
Subject: (no subject)
I know it won't help for most things, but have you thought about trying Dragonspeak software in lieu of typing? Then you can dictate and not have to type.
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