Thursday, October 11, 2012

Updates

Tim did a great job but left a few things out I thought I'd share. Most important is that part of our decision of what direction to take ended up pretty much being made for us. Dr. O'Neill recommended Tim stay the course with the Regorafenib for two reasons, one being that although it wasn't necessarily working it was slowing the growth of the cancer, the other being that if Tim got off of the trial there were no guarantees that he could get back in if the Vectibix didn't work. Most of the trials we had to choose from either had the possibility of a placebo (no thanks!) or had Vectibix. We decided to take Dr. Edenfield's advice and go with the straight Vectibix for Tim as it leaves more doors open to switch faster if the Vectibix doesn't work.

We left for Charleston after making that choice but still not completely at ease with our decision. When we got down there for Tim's discharge we found out that the Regorafenib had received FDA approval the day before at 11:40AM which means his time on the trial was short-lived anyways. It takes about 2 weeks to get the drugs to market which means it should've started to hit the shelves today. It's a huge relief to know that it's accessible to Tim now should he need it.

This week got a little crazy as Tim's chemo was scheduled then was rescheduled but he finally ended up receiving treatment and now everything has finally calmed down...for now. We're on alert to start looking out for signs of the rash coming back. This time we started preparations in advance with going to see a new dermatologist (Tim's previous dermatologist has since retired). He's an awesome guy and is very proactive. He started Tim on some creams & antibiotics so hopefully it won't get out of control again. He's also given us instructions to call and come in the same day we notice the rash starting to flare so he can see it in all of its "glory."

I've seen some really great articles on colon cancer recently, I even saw a great one called "Gut Check" in the most recent edition of Real Simple. It's good to see that message getting out there.

There is one particular post I saw this week though that really struck a chord with me. My friend Liz turned me onto a blog called The Wellness Warrior recently. This week they made an awesome post about being empowered through cancer and it speaks to a lot of things I've grown to believe over the past few years: http://www.thewellnesswarrior.com.au/2012/10/a-letter-to-my-fellow-cancer-friends/

One final thing that's actually the most important of all. Some friends of ours, the Powells, have been going through some pretty terrible circumstances lately. Landon was on the baseball team with Tim at Carolina and I've been lucky enough to get to know he & Allyson over the past few years. Recently Allyson gave birth to twins Ellie & Izzy, luckily Ellie is doing well now but Izzy had to be taken up to Ohio for more specialized treatment of what they believe may be an extremely rare disease called HLH. She's been starting to improve over the past few days but her liver counts today were not where they need to be so tomorrow this tiny baby will have a liver biopsy & bone marrow sample taken at 1PM and possibly need to have chemo. Please keep Landon, Ally & Izzy in your prayers as well as their other two children, Holden & Ellie through what I can only imagine is an impossible time right now. Here is the link to their Facebook page to follow their story: http://m.facebook.com/pages/Prayers-for-Izzy/495219343830343?id=495219343830343&refsrc=http%3A%2F%2Fwww.facebook.com%2Fpages%2FPrayers-for-Izzy%2F495219343830343&_rdr
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