Tim's feet have gotten really bad this week to the point he is now using a cane and they have held chemo until they start to improve (which we are hoping happens VERY quickly!). He's developed a greater sense of empathy with his grandparents at this point too :). So far there has been lots of icing, pain meds & today he was issued a handicapped parking decal which will make our lives much easier. Otherwise we finally got a new TV (Tim is madly in love) and got everything fixed from the lightning strike last week only to find that our sprinkler system was apparently hit by the lightning too so that's being replaced tonight and we should be good to go after that (knock on wood). We've got some friends coming into town this weekend to help celebrate Tim's birthday which we are very excited about so it should be a fun weekend ahead!
On another note, the Colon Cancer Alliance recently mentioned this store in their last newsletter in which the jewelry designer is making these cute colon cancer awareness bracelets and $5 goes back to CCA for each bracelet purchased. I just bought one & thought others might be interested too so here is the link: http://www.shopthebluerose.com/product/bob-bracelet
Oh & finally someone asked a question on the last blog post about what lotion Tim is using for his feet & hands now but didn't leave an email address so thought I'd answer that here. He's using Udderly Smooth cream with Urea in the morning & night on his hands and feet along with something called Heel Balm we got at Whole Foods for his feet. He uses just the plain Udderly Smooth cream throughout the day on his hands (& should on his feet as well but I'm pretty sure he doesn't). He also uses the Band-Aid Blister bandages on all of his foot blisters (& sometimes his hands when they get really bad) for cushioning & to help heal them but we've discovered that 2nd Skin (its a gel like pad thing typically for burns) works pretty well too when something gets bad. Hope that helps!
Hope you all have a great weekend!
Thursday, August 16, 2012
Tuesday, August 14, 2012
Wednesday, August 8, 2012
Start of Month 3
We have gotten back from Charleston and I have started and almost finished the first week in my 3rd month of being on the new drug. They have been keeping up with my CEA count and we found out that it has dropped 1.3 points from last month to this month. This was the news that Jenny and I have been waiting to hear for 3 months. We were also having problems with my blood pressure being too high, but I have been on a medication for about a month now and we finally have that under control as well.
I decided to coach at another tournament in Charleston since I was going to be down there anyways. It was nice also for Jenny and I to be able to get away for a weekend and hangout. We had some good food and we were able to see Sheena and Katie one night too.
This past month of the treatment were not bad. The blisters that I have been getting on my hands were not nearly as bad this time as they were last month. Jenny talked last time about a certain type of lotion that is supposed to work the best for my hands (thank you for all the response about this) and I have been using it the entire time so I guess it really does work.
On a funny note. Our house got struck by lightning the other night. Yes I do know how bad that sounds. But it is actually not too bad of a thing because we are now going to be forced to get a new tv for the living room since the lightning decided our old tv needed to pass away. I have come up with a spreadsheet (which everyone makes fun of me for) so we can figure out which tv is the best. The storm also decided to kill our modem and one of the Direct TV boxes as well. So it has been a crazy start to the week for the Bright household.
Jenny has been giving me grief lately because this coming up Tuesday I will be turning the big 3-0. I don't feel any different but for some reason she thinks it is a big deal I guess because she is so much younger than I am.
I hope that everyone has a great week and thank you for all the support.
Tim
I decided to coach at another tournament in Charleston since I was going to be down there anyways. It was nice also for Jenny and I to be able to get away for a weekend and hangout. We had some good food and we were able to see Sheena and Katie one night too.
This past month of the treatment were not bad. The blisters that I have been getting on my hands were not nearly as bad this time as they were last month. Jenny talked last time about a certain type of lotion that is supposed to work the best for my hands (thank you for all the response about this) and I have been using it the entire time so I guess it really does work.
On a funny note. Our house got struck by lightning the other night. Yes I do know how bad that sounds. But it is actually not too bad of a thing because we are now going to be forced to get a new tv for the living room since the lightning decided our old tv needed to pass away. I have come up with a spreadsheet (which everyone makes fun of me for) so we can figure out which tv is the best. The storm also decided to kill our modem and one of the Direct TV boxes as well. So it has been a crazy start to the week for the Bright household.
Jenny has been giving me grief lately because this coming up Tuesday I will be turning the big 3-0. I don't feel any different but for some reason she thinks it is a big deal I guess because she is so much younger than I am.
I hope that everyone has a great week and thank you for all the support.
Tim
Wednesday, July 11, 2012
Tim's Slacking :) & a little help needed please!
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!
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!
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
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