Thursday, June 21, 2012

The first 2 weeks

The past two weeks started out uneventful but as of the end of last week, that changed. Tim had been outside coaching and when he got home I noticed a rash going up his neck and behind his ear. It went away later that evening & we forgot all about it.

Tim came back from his weekend coaching in Rock Hill when I noticed what looked like the same rash back on his neck as well as on his chest. He hung around for awhile and it went away but came back after his shower. We finally figured out its a heat rash so now not only does he burn quickly & easily in the sun but he also can't handle the heat anymore or take anything more than a lukewarm shower.

He also lost his voice for a few days last week which was a pretty funny side effect. But those have been the lighter ones thus far. All of his joints & muscles are achy so it takes him a minute or two to get going once he stands up and he says the exhaustion is unbelievable but has been able to combat that somewhat with naps after coming home from work. He's also had trouble wanting to eat and being able to eat a full meal but that seems to be beginning to level off now.

The real concerns we've had though are developments that have occurred just this week. Monday night he asked me to check to see if I thought he had a fever (this is a regular occurrence & thus far the answer has always been no). This time though he had a temperature of 100.5 & rising and was freezing. It capped off at 100.7 before we went to sleep but had dropped down to 99.7 the next morning so I made him stay home from work & get some much needed rest. As of last night he still had a fever of 99.5 but we thought it would go away throughout the day. Obviously we were wrong as it is now back up to 100.7 tonight. He feels fine otherwise (except for the side effects mentioned above) so we're really hopeful that this may just be a sign that the chemo is doing its job. A fever does usually mean your body is fighting off an infection right? Plus typically when he has had a fever (that has never lasted more than a few hours before) his CEA has dropped the next time.

Unfortunately the fever & fatigue he is experiencing aren't the worst of his side effects right now. He has developed hand & foot (a blistering rash that is not contagious). His feet (thus far) have escaped any issues but his hands have red & painful blisters all over them making even simple tasks like opening a water bottle or holding a pen really painful for Tim. Unfortunately it looks like his softball season has ended early this year and that he won't really be playing a lot of golf this summer as even something as basic as rubbing a towel on his skin can cause too much heat & friction and cause the blisters.

I really hate watching him go through all of this but we are so hopeful right now that all of these hardships mean the medicine is doing its job. Hopefully we're not building ourselves up for disappointment but are really hoping that all of the issues making this experience so hard are a good sign. We have noticed that previously harder treatments yielded better results for him in the past, maybe these are just really good results...

Regardless, please keep him in your thoughts. It's been really hard for him to have to dive back into all of this again and now although he feels good, the physical limitations right now are pretty tough for him to deal with both physically and mentally. He's having to be reliant upon others which hes really not used to. We both are in full agreement that if these limitations are what need to happen in order for him to get his miracle then they are more than worth it but there is a fine line that we're walking to make sure that the side effects don't get so out of control that they have to lower his dosage or hold treatment. Luckily he only has about a week left until he gets a week off.

Monday, June 11, 2012

Starting Over Again

Jenny and I went down to Charleston at the end of last week to Charleston Oncology and Hematology Associates to talk with Dr. Geils about the new chemo regimen that I will be on.  We left Greenville Thursday morning for our appointment that afternoon and got to Orangeburg and got a call from them telling us that our appointment was changed to 9:45 the next day.  We are lucky that we just happened to pack extra cloths thinking that they might have to do tests the next day.  It all worked out well because we were able to stay with one of Jenny's sorority sisters Emily Warren and her hilarious husband David.

We got up early the next day and got a quick breakfast at Hominy Grill before heading over to the appointment.  They ran a bunch of tests and we ended up staying there for four and a half hours.  Everything came out good and I actually started my treatment that day.  My new treatment is a drug called regorafenib.  This is a pill based treatment, which is so much nicer than infusions.  I will take 4 pills each morning and the only side effects known are hand-foot syndrome, fatigue, and hypertension.  So far I have taken four days of pills and haven't seen any of these effects.  I will take three straight weeks of pills and then I will have one week off. Once the four week cycle has ended I will travel back down to Charleston and meet with the doctor to make sure that everything is still going good.

I hope that everyone has a great week.


Tuesday, June 5, 2012

Starting Again

We've finally got the call (well 2 of them) telling us Tim has been accepted to the trial in Charleston. We were first told he has an appointment at 4pm tomorrow but got another call today saying he has a 10am appointment on Friday so we get to straighten that out first thing in the morning. Irregardless he should be on this new treatment in the next week or so if not tomorrow/Friday.

We're really hopeful with this one, not only has the TargetNow Therapy program (the program we raised money for & that Tim had the biopsy for) matched a drug that is similar to the new drug but it has shown an incredible amount of success in trials. The FDA has not approved its use yet but it has gone through Phase 3 trials and is in line for approval. Apparently the trials were so successful that they stopped mid-trial, completely unblinded the double blind study (apparently a really big deal) & offered the drug to those that had received the placebo. Now it's being offered for compassionate use (for those that have exhausted all standard protocols) which is how Tim will have access to it. Hopefully this will turn the tide & finally get the growth under control, we'll find out soon enough.

On another note, Here is a video about the Dragon Boat Race Tim & I participated in about a month ago if you want to see what its about in a little more detail: