The past 2 days have shown the first side effects of Tim's new treatment. I really think the preventative steps we took helped as it took almost a week for this to show up and it still isn't bad at all. You have to know what you're looking for to actually notice the rash but Tim is getting uncomfortable. Feeling as though he has a sunburn on his face and his head burns a bit. We need to get his special shampoo again which should help a lot with his scalp. As much as he hates the rash Tim keeps saying how much better it is than the hand and foot syndrome he was previously dealing with.
His nurse, Lynn, called me before Tim started treatment to say that if we wanted pictures together we needed to do it then. We haven't taken any together since our wedding (2 1/2 years ago) so I got in touch with our wedding photographer Olivia Griffin. She very graciously agreed to fit us into her schedule at the last minute for a day she typically reserves to spend with her family and we are so grateful. I know everything she does is pretty fantastic so she may even be able to make us look good. :)
Tonight we went to dinner with my grandma, two of my cousins and their son at Open Hearth. Grandma had a little fall about 3 weeks ago which gave her a fractured arm, some stitches in her hand & forehead (both removed now) and some bruising. Not only is she now doing just as well as she always has but she also saw a man she taught back in the 60s who still recognized her, hoping I got those Miller/DeVenny genes!
That's about it in our world, pretty slow week for us (that's a good thing). It takes awhile to see if the meds are working and the first round of bloodwork usually shoot the numbers way up (which is always a bit disconcerting) but I'm anxious to start seeing some good results and hope we actually get some this time. Until then we're just taking it a day at a time and keeping life as normal as possible.
Izzy Powell, the baby of our friends Landon & Allyson, seems to be finally heading in the right direction. Please still keep them in your prayers as she still has a long way to go for a full recovery.
Thursday, October 18, 2012
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
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
Wednesday, October 10, 2012
Back at it
I have officially finished my first round back on Vectibix. It is much easier to have it alone rather than being paired with 5-FU. The side effects haven't started yet but I have been preparing for a little over a week for them. I wish that there was more to talk about concerning the actual chemo, but it was rather normal. I'll be on just this for awhile until we figure out if it works or not then we might add 5-FU back in as well. If it does work I'll be on this until it stops working or something new & promising comes along. We're really hoping its the second option rather than the first.
This past weekend I went down to Columbia for the USC game (yes the USC no matter what the football coach in Pickens County says) and tailgated with a few old teammates. It was cool to be able to see David, Kevin, Brian, and Matt again. Kevin and David won the tailgate package from the golf tournament last year so we tailgated with Rusty and the rest of the Courtyard crew. David and I went into the game together and it was one of the loudest games that I have been to. USC (yes again for the coach in Pickens the real USC) played one of the best games I have seen them play.
We have some of Jenny's friends coming up to stay with us this weekend for Fall For Greenville, so it will be another eventful weekend. Carolina also plays LSU Saturday night so hopefully they can keep the unbeaten record intact.
We also were able to announce today that Goodwin-Foust is building a Brightlife/iTOR showhome which will be ready in the spring. We don't have a lot of details yet but it is going to be a in new neighborhood off of Hammett Road called Greywood at Hammett. We are really excited and flattered that they have decided to do this as well as how amazing all of the vendors & partners have been. If you're in the market for a new house this spring, keep this one in mind, its going to be pretty incredible from everything we've heard about it so far. We will share more details as we get them.
I hope that everyone has a great weekend.
Tim
This past weekend I went down to Columbia for the USC game (yes the USC no matter what the football coach in Pickens County says) and tailgated with a few old teammates. It was cool to be able to see David, Kevin, Brian, and Matt again. Kevin and David won the tailgate package from the golf tournament last year so we tailgated with Rusty and the rest of the Courtyard crew. David and I went into the game together and it was one of the loudest games that I have been to. USC (yes again for the coach in Pickens the real USC) played one of the best games I have seen them play.
We have some of Jenny's friends coming up to stay with us this weekend for Fall For Greenville, so it will be another eventful weekend. Carolina also plays LSU Saturday night so hopefully they can keep the unbeaten record intact.
We also were able to announce today that Goodwin-Foust is building a Brightlife/iTOR showhome which will be ready in the spring. We don't have a lot of details yet but it is going to be a in new neighborhood off of Hammett Road called Greywood at Hammett. We are really excited and flattered that they have decided to do this as well as how amazing all of the vendors & partners have been. If you're in the market for a new house this spring, keep this one in mind, its going to be pretty incredible from everything we've heard about it so far. We will share more details as we get them.
I hope that everyone has a great weekend.
Tim
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