Not a lot to report for Friday, still had a bit of a head ache hanging in there. Still waiting for the rash to appear. I keep thinking that I see something but when I have Andrea look at she doesn't see anything! Wishful thinking on my part I think. Once I stop looking for it, it will show up!
Since a lot of people haven't seen Earl, I'll get one of the kids to take a picture this weekend and I'll post it here on the blog.
Woke up with a brutal head ache this morning...I think I was a bit dehydrated. The Erbitux really dry's you out. Now I know that I need to keep the fluids going in all the time to keep up with it.
We went to the Radiology Oncologist, Dr. Leonard today at RMCC - Littleton. Once again some really great folks to work with. The doc is very soft spoken and very well respected amoung his peers. And he was patient with me and hair trigger gag reflex! His nurse is great and I think we'll have a good time. The RT gameplan is next Wednesday the 31st we return to RMCC - Littleton to be fitted with my mask (a plastic mesh that will begin around the upper lip and go over the head to a frame that will fit on the table to help hold my head still). I'll also get fitted for a mouth piece or bite block. There is some serious high tech involved in all of this - the mask will get three holes cut in it around the upper forhead (where the hair line used to be!) and this is where they will tattoo 3 spots onto my head to line up the head with the lasers. The mouth piece has some metal balls that work like a localized GPS unit while I am in the room. They use a combination of the lasers and the GPS type stuff to make sure that where I am being radiowaved is exactly the spot that they want to be - everything aligned in 3 D.
I'll need to go back in possibly Thursday or Friday for a dry run where they will only do a CT scan to provide the 3D imaging and alignment, then the doc will determine angles and dosage for my visits, then we setup the schedule. It will be every weekday M-F for 7 weeks - each visit will be about 15 to 20 minutes in the room. Not bad!
They gave me some rinses for the mouth and most importantly some atevan (sp?) (a drug that mellows you out - anti anxiety drug) to take before next week so I don't puke on the guy trying to get my teeth impression!!! Luck him!!!
I forgot to mention in the previous post that I have surgery scheduled next Tuesday the 30th to get my feeding tube put in. I will probably not need it for a few weeks but am taking a proactive approach in getting it put in now while my strength is still good and I can recover more quickly.
That's about it for today...I am tired! Tomorrow is a day without an appointment! We won't know what to do!
Didn't post last night as the Benedryl was pull hard on the eye lids!
We started out the day with a trip to see Dr. Nemechek, another good doc, been pretty lucky in this area! We talked for awhile and I filled him in on everything then I got my nose numbed again...terrible feeling! He took a good look at Bill through the fiber optics and even let Andrea take a look at him, she thought that was pretty cool! He agreed with Dr. Dickey and Dr. Reznick's analysis and informed us that he will not be doing surgery on either of the boys. They will both be taken care of with RT and Erbitux.
We headed over the RMCC - Parker next for my first dose of Erbitux. This was a base dose to get things started so it was a big one and took 2 hours. I got the Benedryl first to help fight off any allergic reactions I might have. Didn't have any! We grabbed some dinner on the way home, ate, and then I crashed on the couch. Woke up with a major head ache that we thought was from the way I was laying. Took something and off to bed to wake up around 3:30 with an even bigger head ache, I'm pretty sure at this point I was dehydrated. Felt like one of those very late nights with way way way to much booze and cigarettes...throbbing if I blinked my eyes! That is one of the side affects...wish I had drank more before I slept!
Thursday we are off to the Radiology Oncologist and get things scheduled and planned out.
This afternoon we were back into RMCC - Parker for training on what is coming up with the Erbitux. Once again I was impressed by the folks at RMCC. One of the nurses sat down with us and explained what they were going to do and side effects, the whole works. Even though Dr. Reznick had filled us in on everything they went over it all again to make sure we are comfortable and know what to expect.
Tomorrow I get my first base dose of Erbitux; the base is double the normal so I'll be on the bag for 2 hours this first visit and then just one hour in the following treatments. They are going to give me a little benedryl (sp?) with it just to prevent any immediate reactions. The potential reactions could be an acne like rash and possibly the runs; beats the daylights out of the chemo side effects!!! They have a room there with about 8 lazyboys and that's where I'll be hanging out every afternoon for the next 7 weeks.
I do have the appointment with Dr. Nemechek tomorrow as well and he may do another needle biopsy of Earl and we can discuss whether Earl needs to be surgically removed or not. He and Dr. Dickey have already discussed Bill and sounds like he is not going to want to cut on him.
We did speak with the nurse and let her know that I do want to go ahead and get the feeding tube now instead of later, so she contacted the gastro docs office for us and they will call us tomorrow to set up an appointment. I figure it will be easier and less of a strain on the system to get it put in now instead of waiting until I really need it...a little proactive work should make things easier in the long run. It all sounds pretty simple and easy to use; if it keeps my calorie intake and liquids where they need to be it's worth it.
So tomorrow the battle begins! Sorry boys but you days are numbered!
WOW! It's been a crazy day! I'm not sure where to start so I guess let's lead off with the good news!
Bill and Earl are all alone!!! The PET/CT shows that boys are the only hot spots - it has not spread any further than that!!! Whew! We are breathing again!
So, where do we go from here? Dr. Reznick is ready to attach these guys and so am I, we have set up a tenative appointment for Wednesday afternoon to start on my base of Erbitux before we begin the RT. It will be administered once a week via IV, it takes about an hour once a week and I have already set up my next 7 appointments to get my treatments. We'll be going into the office tomorrow for a training session, done by the nurses, to educate on the drugs and what to expect. I cannot talk highly enough about the staff of Rocky Mountain Cancer Clinic - Parker especially Dr. Reznick. These folks are incredible at all they do and working with both myself and Andrea. The doctor speads time with us and explains everything, answers all of our questions and is truely interested in making sure I beat this cancer. I will be getting my blood tested on a weekly basis to make sure it is all good; CBC every other week and checking magnezium and other items every week.
Everyones big question, what is Erbitux? Well it's not chemo, it is a drug that works like chemo but without the nasty side effects. We could get into the science of it but I will let you read that part of it if you want to. The drug was released initially for use on Colorectal Cancer and got it's FDA approval for use on SCC last year. Dr. Reznick has had good success with it in conjunction with RT. Here are some links to more info regarding Erbitux:
http://www.spohnc.org/docs/erbitux.htm
http://www.spohnc.org/docs/FDA_News_Erbitux.htm
http://www.spohnc.org/docs/erbituxresponse.htm
I am also adding a couple of new links in the links section to SPOHNC and the Yul Brynner Foundation, a couple of sites dedicated to support and preventions of head and neck cancers.
I still have my appointment with Dr. Nemechek on Wednesday and Dr. Leonard on Thursday, and there we'll talk with him in regards to his game plan on my RT. I believe that it will probably be a M-F treatment plan but how many times a day, how long each treatment and how many weeks will be determined by the doc. I'll be doing a lot of typing this week!
It feels like a 700 pound gorilla has jumped off my back now knowing that it has not spead. I'll be updating the calendar with what we know so far.
Thanks to everyones kind words who have signed the guest book so far, it means a lot.
Another weekend, another snow storm. Pretty close to another foot added to the already still 3 feet in the yard! I'm almost as tired of the snow as I am Bill and Earl!
Pretty much a take it easy Sunday watching football with my buddy and hanging out. The first game was bad and the first half of game 2 wasn't so good but Peyton really turned it on in the 2nd half, guess they shook that monkey off thier backs in Indy. Would have been nice to have a brew while watching the game but the docs got me on the wagon!
Tomorrow we'll get the news on PET/CT scan and were taking it as no news is good news. Appointment is at 3:00 pm at Dr Reznick's and we should get more of the scoop.
I have added a couple of new items to the blog today, a Guestbook and a Calendar. The links are over to the right hand side and can be accessed by clicking on them.
The Guest Book - please sign my guest book so I can see who's visiting my blog (I want to make sure I don't say anything bad about anyone visiting the site!!!)
The Calendar - this is where I'll put any appointments or other up coming events so anyone can see what and when things are going on. It's kind of hard to keep track of some days!
Not much to post for Saturday. We took it easy and just putzed around the house and watched TV. Saving energy to shovel for the upcoming snow.
