Tim was supposed to write this almost a week ago but I can barely get him to sit down these days, much less write a blog between work & the traveling his coaching has required lately. Not to mention that his memory is like that of an 80 year-old, pretty much gone as soon as he thinks of it, hence why the dry cleaning is still at the cleaners 2 weeks later. :) Life should slow down a bit after the next two weeks so hopefully we can get back to a normal schedule of blogging.
Things got pretty out of control over the past few weeks to the point that we were both pretty worried about what would come next but we've been told that the first 6 weeks on the new drug seem to be the hardest so we're just settling down to ride out the storm of these next 2 1/2. There is only one other guy who is ahead of Tim in the trial so I've been really dependent upon the internet to see what is "normal" and what isn't with this since some European trials are further along at this point. It's really a strange feeling to not have a clue if a side-effect is something we should be concerned about or if its completely normal, not to mention with no one else really knowing that answer either. Luckily we are surrounded by a great team of doctors and nurses that we trust implicitly and have been incredibly willing to listen to our concerns and answer our questions as best they can. Essentially a lot of the information that we are giving them is helping to plan the course of others who may receive this treatment down the road.
I think the last time I wrote was about two weeks in, the fevers he had pretty much continued right up to him finishing the meds and he developed a pretty bad cough. It got to the point that they became so concerned about him having bronchitis or pneumonia that Tim got to go get a chest x-ray, luckily it was completely clear. He hasn't had a fever yet since he got off of the meds and his cough isn't nearly as severe. His feet got to the point of being so blistered that we went out and got him a pair of Nike running shoes he had to start wearing all the time and still was limping a lot. They have been fantastic though, the top is pretty much completely mesh so they breathe a lot but the bottoms are really cushioned which have helped to protect his feet. We've also found that blister band-aids are great for them and have been going through packs of those at a time. We've also bought him 2-3 pairs of the Dr. Scholl's gel inserts that we keep in the fridge so he can throw them into his shoes and help to keep the temperature of his feet down which helps with preventing the blisters from happening. They seem to have cleared up since he got off of the meds so we're hoping that lots of prevention will keep them from reoccurring. His hands also got pretty bad so I had to help him get dressed in the mornings since he couldn't button his dress shirts. The blisters calloused up and unfortunately that skin peeled off which has left very sensitive pink skin that I'm really nervous about being much more susceptible to becoming new blisters with this round. Luckily the pain of the blisters went away with his week off as well but we're quickly approaching the point where they began to show up last time.
All of this also came with the knowledge that he is no longer allowed to do yard work (too hot and too much friction on his hands & feet), he can't walk long distances (so now he has an excuse for driving in circles to find the closest spot), can't clean the house (can't be exposed to the cleaning products even though we use all natural stuff or the friction), can't wash dishes (he apparently took this to mean he can't put them in the dishwasher either, that situation was remedied quickly :)) and can't take out the trash (can't get the bag off of the can). We've accommodated all of these so far (many he really wasn't too devastated about not being able to do anymore, go figure...) and have just switched some of our roles which has been interesting to say the least. His biggest don't now is that he can't take hot showers and according to the little device he has that tells you if the water is the right temperature he basically has to take cold showers, he keeps cheating on this rule though as evidenced by the steamed mirror I see after every shower he takes, can't say I blame him for that one though.
We did go to Charleston last Friday for his one month check-in and were pretty much in and out as we went to Asheville on Saturday to do an early birthday celebration for me since Tim decided to abandon me for coaching in Florida on my actual birthday (sorry, just had to throw a little jab in there but no worries I'm going with our families to his favorite restaurant tonight for dinner as retribution. I'll be sure to send him pictures of my food to rub it in as well :)) The doctor allowed Tim to stay on full dose as long as he promised to report any fevers or side effects immediately so they could be taken care of. We're really hoping that this time is smoother than last so he can stay on the full dose but who knows what may happen. We didn't get any news about progress like we'd hoped but we are anxiously waiting to see when that news might come.
As for now Tim started on his 2nd dose last Friday and attempted to play softball (irregardless of the condition of his hands) on Monday until I killed that dream, like I said he is refusing to slow down much to my chagrin at times... We've started to see some of the same initial side effects creeping back in this week, his joints becoming sore so he walks like an old man, the loss of his voice, the rash that is creeping up his neck and down his chest and back so we're preparing for what's to come over the next 2 1/2 weeks. This time it is a little easier knowing that the week off will give him some reprieve from all of this but we don't know if the side effects will become cumulative like past drugs have been or if it will be successful. I think all of it will be much easier if we just know that there is good coming from it.
We do have one need if anyone could be of help, he is supposed to keep his hands moisturized with Udderly Smooth Udder Cream (preferably the extra care with Urea we've been told) and yes, unfortunately it has to be that exact brand and type. I think we've been in every Wal-Mart, K-Mart, Target, Walgreen's & CVS that we can find around here with no success, we can't even find the basic Udderly Smooth Udder Cream. Just wondering if we could ask all of you to keep your eye out for it locally & if you see it let us know where you've found it. Right now we've been ordering it off of the internet which wouldn't be a problem except Tim's memory keeps him from remembering he needs it until he actually really needs it so knowing where to get it locally would be great. Thanks in advance for your help!
Also, sorry for so much detail, I know this blog is a lot about keeping you guys informed but we've learned that it's also a great spot for us to come back & reference what he was experiencing at each stage and at times has helped us when we have a question about what happened when so it's become a bit of a journal for us as well. I mean if you think we can't keep up with this thing which we each have access to from our computers, cell phones & iPad, just imagine us trying to use actual pen & paper :)
Hope everyone has a great week!
Wednesday, July 11, 2012
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.
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.
Tim
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.
Tim
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: http://www.youtube.com/watch?v=TBAznTsHbKw&feature=youtu.be
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: http://www.youtube.com/watch?v=TBAznTsHbKw&feature=youtu.be
Friday, May 25, 2012
It's Been A Long Week
We got Tim's results on Tuesday and as Dr. Edenfield said, "it wasn't the homerun we wanted but a good double."
Basically the testing confirmed some of the drugs that have worked previously as well as confirmation about some that haven't worked but most importantly it gave us a new drug called Regorafenib to try.
It's currently in Phase 3 trials & hasn't been approved by the FDA but has seen really great results so far so were really hopeful for Tim to get some good results.
We're now waiting on finding out details of what comes next but we do know that the trial is based in Charleston so although well have a little traveling it won't be too bad.
This morning Tim had a CT scan, we're still working through the details but 100ccs (about 1/2 a cup) of fluid & dye were injected directly into his arm instead of his vein. His arm got really swollen (over 3 inches bigger than the other) & although he was icing it & keeping it elevated about 6 hours later the swelling was continuing & spreading.
We went up to the Cancer Center so Lynn could check it out and were told he needed to go to the ER & they started calling plastic surgeons for the fear he had something called compartment syndrome which can only be fixed by cutting the arm open & leaving it that way for a few days to drain then putting it back together with skin grafts. Needless to say, we got pretty nervous but luckily Lynn was calling into the plastic surgeon so we could skip the ER & meet with him directly. He mentioned that until Tim began having nerve issues or problems moving his joints that we could just go home. Luckily his swelling has reduced about a 1/4" so far and no issues no far with pain or nerve issues so were hoping he may be out of the woods now thanks to the incredible care by Lynn, Tammy, Rose & the rest of the te at the Cancer Center!
We're hoping that today's excitement means that everything else should go pretty smoothly with this new treatment plan, should know more in the next week or two.
Basically the testing confirmed some of the drugs that have worked previously as well as confirmation about some that haven't worked but most importantly it gave us a new drug called Regorafenib to try.
It's currently in Phase 3 trials & hasn't been approved by the FDA but has seen really great results so far so were really hopeful for Tim to get some good results.
We're now waiting on finding out details of what comes next but we do know that the trial is based in Charleston so although well have a little traveling it won't be too bad.
This morning Tim had a CT scan, we're still working through the details but 100ccs (about 1/2 a cup) of fluid & dye were injected directly into his arm instead of his vein. His arm got really swollen (over 3 inches bigger than the other) & although he was icing it & keeping it elevated about 6 hours later the swelling was continuing & spreading.
We went up to the Cancer Center so Lynn could check it out and were told he needed to go to the ER & they started calling plastic surgeons for the fear he had something called compartment syndrome which can only be fixed by cutting the arm open & leaving it that way for a few days to drain then putting it back together with skin grafts. Needless to say, we got pretty nervous but luckily Lynn was calling into the plastic surgeon so we could skip the ER & meet with him directly. He mentioned that until Tim began having nerve issues or problems moving his joints that we could just go home. Luckily his swelling has reduced about a 1/4" so far and no issues no far with pain or nerve issues so were hoping he may be out of the woods now thanks to the incredible care by Lynn, Tammy, Rose & the rest of the te at the Cancer Center!
We're hoping that today's excitement means that everything else should go pretty smoothly with this new treatment plan, should know more in the next week or two.
Thursday, May 17, 2012
Big Announcement
We finally have the total raised from the Golf Tournament, Dinner & Silent Auction which was $14,679.37. That is WAY above what we set our goal to be and we couldn't be more excited about how well everything turned out. Thanks to all who helped, donated or participated, we couldn't have done it without all of you! We're looking forward to 2013 already (but are taking a little time off first :)).
Sorry it's taken so long! After a day of recovery from the tournament I started a new job which I've been trying to get my head wrapped around as well as Tim's surgery and just normal everyday life happening. It's been busy but a lot of fun as well!
Today marks 2 weeks exactly since Tim's surgery & he is doing great. There's been one little mishap with the incision in which the chest tube was reopening a little but that was fixed pretty easily and as of last night only had about a quarter-inch section that needed to seal up still. That may be the result of how quickly he's become reactive again, he went to the gym Tues & Wednesday of last week, played golf Thursday, went to the beach to fish with my dad Friday through Sunday and was back playing golf everyday this week again.
The reason behind why he is playing so much golf is due to his brother surprising him with an invitation to play in the BMW Pro-Am as a guest of the tournament. Steven wrote the nicest email I've read telling of Tim's story to the leaders of the tournament which is what got Tim the spot. The two of them will get to hang out for the next few days as Tim plays & Steven caddies for him, it should be interesting to say the least. Tim is beyond thrilled & even has his outfits for each day planned out (which he is pbly going to kill me for announcing :)). He plays at Chanticleer this morning, Carolina Country Club tomorrow morning & will be teeing of at Thornblade on Saturday morning around 10 in case anyone is planning on heading out there.
Sorry it's taken so long! After a day of recovery from the tournament I started a new job which I've been trying to get my head wrapped around as well as Tim's surgery and just normal everyday life happening. It's been busy but a lot of fun as well!
Today marks 2 weeks exactly since Tim's surgery & he is doing great. There's been one little mishap with the incision in which the chest tube was reopening a little but that was fixed pretty easily and as of last night only had about a quarter-inch section that needed to seal up still. That may be the result of how quickly he's become reactive again, he went to the gym Tues & Wednesday of last week, played golf Thursday, went to the beach to fish with my dad Friday through Sunday and was back playing golf everyday this week again.
The reason behind why he is playing so much golf is due to his brother surprising him with an invitation to play in the BMW Pro-Am as a guest of the tournament. Steven wrote the nicest email I've read telling of Tim's story to the leaders of the tournament which is what got Tim the spot. The two of them will get to hang out for the next few days as Tim plays & Steven caddies for him, it should be interesting to say the least. Tim is beyond thrilled & even has his outfits for each day planned out (which he is pbly going to kill me for announcing :)). He plays at Chanticleer this morning, Carolina Country Club tomorrow morning & will be teeing of at Thornblade on Saturday morning around 10 in case anyone is planning on heading out there.
Saturday, May 5, 2012
Freedom
The rest of yesterday & last night were pretty uneventful, we actually got some decent sleep without being checked on every hour.
This morning Tim had another chest X-ray & we met with the doctors who gave the go-ahead for him to be discharged. They removed the IV needle from his port & changed his chest tube bandage so I saw that incision for the first time. It's much smaller than I envisioned & was already considerably healed up.
Tim is still pretty sore but he hasn't taken any pain meds since yesterday afternoon, nor has he needed them. He's quite a little trooper.
We got home around 12 to find that one of our sweet neighbors had mowed for us. Yet another example of how all of you have gone so above & beyond, we are so grateful!
My mom dropped our dog off & the three of us have been napping all afternoon. There is a pizza on its way now & we have every intention of being lazy bums for the remainder of today & tomorrow and will take it a day at a time from there.
This morning Tim had another chest X-ray & we met with the doctors who gave the go-ahead for him to be discharged. They removed the IV needle from his port & changed his chest tube bandage so I saw that incision for the first time. It's much smaller than I envisioned & was already considerably healed up.
Tim is still pretty sore but he hasn't taken any pain meds since yesterday afternoon, nor has he needed them. He's quite a little trooper.
We got home around 12 to find that one of our sweet neighbors had mowed for us. Yet another example of how all of you have gone so above & beyond, we are so grateful!
My mom dropped our dog off & the three of us have been napping all afternoon. There is a pizza on its way now & we have every intention of being lazy bums for the remainder of today & tomorrow and will take it a day at a time from there.
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