Like I said on 'introduction' page. I was diagnosed with QCC on the base of the tongue by my ENT. Biopsy was taken and diagonis comfirmed a couple days later. From the Dr it is considered a stage IVa. This has been over a month ago (Jan 18th..to be exact). Since then it's been trying to get into see Chemo Dr, Radiation Dr, Dentist and test after test after test like catscans of head and chest (which both slowed up CLEAR), Petscan which showed a little activity in colon, Colonoscopy which took care of a couple polyps. I wear upper dentures and don't have much on bottom...so only a couple root extractions will be needed there.

Now kind of anxious to get this thing started. We've tested enough already. IMO...the clock is ticking and I don't this puppy to spread anywhere else than base of tongue and right lymph nodes where it is for sure NOW. I'm seeing my chemo Dr who seems to be the 'lead' doctor in all this this coming Wed so maybe we're about ready to start the program (I hope immediately)...which is a 'clinical trial' that I've decided to go with which goes something like this:

1. 'Induction' chemotherapy for about 2 cycles of 3 weeks duration using Docetaxel, Cisplatin, and 5-FU (pump).

2. Chemoraidiotherapy using Hydroxyurea and the 5-FU again and RAD treatments TWICE a day for 5 days running. Then a week off, then doing it again for about 4 or 5 cycles. There is the option of doing this part of the treatments as an 'in-patient' at the hospital by going in on a Sunday night and leaving Friday night to go home. Then a week off, then do it again, and again, etc.
I'll probably go this route mainly because I live alone and have nobody to drive me to treatments if I decided to try to be at home and do it. Got the definetly feeling reading posts here that 1) I wil l most lkely NOT be up to the twice daily trips that would necessary and the 'pain meds' that most likely will come into play will prevent the driving myself part, etc.

3. Most likely a neck dissection to rid me of whatever's left there if necessary (probable I'm hearing).

I would be interested in hearing from anyone who has went thru something close to this 'trial'? Any thouhgts of going after it this way? How you faired and what was worst of it? And, I plan on keeping a sort of update going here that I hope helps anyone in the future that may want to know how the treatments affected me. The absolutely FIRST thing I learned about this desease and treatments from research on-line here that is EVERYBODY is different thus EVERYBODY will have different results and side effects, etc. But, if in any way I can help any some questions that some people may have 'going in' I will feel I helped someone else in my situation.

I'm positive I will have questions, concerns or just flat will want to vent along the way.

This will be just one man's fight and story.

Gary O

A few things I forgot to mention in orginal note:

1. On a personal history side...I'm 60 (will be 61 on July 26). I'm 6'4 and very overweight going in, was about 390 lbs 1st of the year...now weight about 365 (no real diet..just by eating better)...remember haven't started any treatments yet). Only major medical thing that has happened to me in my 60 years was a 'quadruple' heart bypass about 8 years ago. Recently had stress test and echo whatever test and they turned out excellent.

2. Had a 'port' put in about 3 days ago. I'm anticipating this will help me a lot when it comes to the drawing of blood when necessary, the chemo treatments, and maybe IV stuff I may have to go thru. Being overweight, my veins are hard to find and I didn't look forward to all the poking EVERY time, etc.

3. I wouldn't mind at all losing some more weight in this thing as long as it can be the 'right' weight and can stay healthy in the process. Guess I'll need to work closely with a nutritionist on this. Most posts I've seen are people that are despartely trying to maintain or gain weight thru all this. Heck, I still need to lose a whole person to get where I should be (about 150lbs). I say again...losing the weight could be a 'good' thing only if I can do it healthy.

4. On the 'work' front. My boss has been very supportive of this going in. Almost 95% of what I do doesn't involve 'interaction' with people. I work in an office and most of what I do is on the computer and it looks like I may be able to set it up to work at home. I'm actually planning on using this work thing at home as part of my therapy. A person can take only so much tv and sleeping. I feel I'm going to really need something to take my mind off what's happening to my body as much as possible. Doing this at home I can work a bit...if I get really tired, take a nap. If I get sick...I can in privacy of my home rather than at work (which would not be a good scene I'm sure). At least that's the plan...stay tunned.

5. Just now got a call from my cancer center and they just set up a 'swallowing study' from next Monday. (and here I thought I was done with test, silly me!).

6. Also just had catract sugery about a month ago which is HIGHLY recommended if anybody is considering this. At least I can freaking see now.

Now, you probably know a ton more about me than you ever wanted to. Just wanted to give a clear picture of me going into this.

Ironically, I too, was morbidly obese when I went into treatment. I tipped the scales at 380 pounds. I now weigh 221 pounds.
Not a good way to lose weight. I also smoked more than two packs of cigarettes daily.
Two weeks after I began treatment, I awoke one morning and had absolutely NO craving for a cigarette and to this day haven't had a craving for a smoke.
Darrell

Darrell...

I see on bottom of your note you had a reoccurance. Really sorry to hear about that after what you had to go thru. I guess that horrible possiblity will always be in the back of everyone's mind that have had this. I hope you can lick it for good this time.

On the smoking thing. I also used to smoke over 2 packs a day until I had the heart surgery. I stupidly did pick the habit back up a few months after the bypass...but only about a pack day. Then about a year ago my company got on a health kick and banned smoking ANYWHERE on company property (used to be able to sneak outside for a puff now and then). I'm basically lazy, so I wasn't about to walk about a block to get off co property so that's 8 more hrs I couldn't smoke so went down to about 1/2 pack a day. I'm ready to take the 'last' step since I've heard that the smoking can diminish what the chemo is trying to do. Also, when the taste buds go bye-bye I'm sure smoking will never have been the same anyway.

So, the way I look at it: If I can survive the treatments I could come out of this a whole lot thinner and smoke free. At least that would be something for sure.

FINALLY..........

I was starting to think I was never going to start any treatments on this thing (1st diagnosed on Jan 18th !!!!!!). Well, after getting a couple roots extracted and some time for that to heal, I finally started treatments a couple days ago (Sun, March 19th, 5pm to be exact).

I didn't end up in the one 'arm' of the 'clinical study' I thought I mentioned above. Aparently, when you sign up for the 'clinical trial', it's a roll of the dice to see which 'arm' you get. I ended up in the one WITHOUT the pre-induction chemo so that will lump off about 6 weeks of total treatments. So my ritual will be this now:

Sun night...hooked up to chemo (5FU pump) about 5pm (nurse comes to home) and have to take a Hydroxurea 500mg tablet (chemo) and a Decadron 4mg tablet (steroid) twice a day (approx 6 am...6pm)

Mon...Radiation at 8am and 2pm (has to be 6 hrs apart they say)
Mon...Chemo at 9am at CCC (taxotere) takes about an 1 1/2 hour start to finish with blood work, etc.

Tue...Radiation at 8am and 2pm
Tue...Meet w/Rad Dr after 2pm treatment

Wed...Radiation at 8am and 2pm
Wed...Meet w/Chemo Dr after 2pm treatment

Thu and Fri...Radiation at 8am and 2pm
Fri...Unhook 5FU pump

I'll be doing this on a 'week on...week off' basis with only thing to do on 'week off' is meet with Chemo Dr on Wed and get blook work. I'm also trying to do this as LONG as I can as 'outpatient' from home and make the drive twice a day to CCC (about 30 minutes each way). There is 'option' to check into hospital on the 'on weeks' but I absolutely HATE hospitals and will avoid as long as I can. I just feel I'll be a ton MORE comfortable and can control my enviroment better at HOME..sleeping in MY bed, watching MY tv, eating MY food, using MY bathroom, etc., etc. I would be bored to death laying around in a hospital bed all day for just two 30 minute treatmenst at 8am and 2pm and a Dr visit here and there. Plus, call it crazy logic...there are a ton of sick people in hospitals you would think and I also want to control my contact with as few people as I can thru this for less chance of ANY complications that would cause ANY interuptions in treatments. I'm sure the Dr's would tell me when/if I needed to do the hospital thing if/when the time comes. The biggest thing I'll have to watch I figure it to keep well hydrated and keep my calories up so I don't lose TOO much weight. Time will tell.

Now to the good stuff........My thoughts and takes on treatments, CCC personnel, and reactions to treatments and side effects I 'personally' encounter along the way. Like I said in some of above posts...this is to be ONE PERSON'S journey of what was done and how it affected ME. I'm sure it will affect eveybody a bit differently.

CCC personnel....

All my Drs are absolutely great so far. Tried to answer EVERY question and have given me good idea of what I may expect along the way.

The KELLOGG CANCER CARE CENTER (I use the one in Highland Park, IL) is a first class operation as far as I can tell.

The CHEMO treatment area of center I also 1st class and they make you fell VERY comfortable. You get a nice litte private room with tv/stereo and comfortable lazy chair (and chairs for visitors if needed). The staff is excellent and are at your beckoned call instantly. Feel quite pampered here.

The RADIATION staff is a little bit dissapointing to me so far. There's 3 of them and they all seem to have personality of a rock (maybe even a little less). I guess it could get a bit boring streaming people thru this thing all day like cattle?? They give me NO idea of what to expect, no warnings of any kind, etc. I expected more. The table (not very wide) they put you on was NOT made for me. There is no darn place to do anything with your arms. Nothing to grab on to, no place to lay them, etc. The mask is no problem so far (for me). The headrest is hard as a rock and could be a ton 'softer' and more comfortable. The longer times you're on the table (when they take some pictures, etc, it can really start to bother you and cause a headache. The ONE good thing I can say they do is let ME put the tongue stick in where I want it before straping the mask on. I've only been thru 4 treatments so far, so guess I'll get into the routine of things more later. Looks like normal treaments are going to time out to about 25 minutes total time on table. It is IMRT radiation and takes about 7 shots of me at different angles around the head. Each lasting about 100 seconds (or at least that's how long the buzz last...not sure you're getting rads to whole time of that?).

Side effects.....only 4 days so not to much to report so far

Chemo...none yet I can tell

Radiation...nothing at treatments you can feel. As each day goes by starting to tell something is happening in my mouth area. It's just a bit different. No problems at all with taste, pain, but starting to get a bit of 'dry mouth' feel. It's early, right.

Meds they've set me up with SO FAR...

MAGIC MOUTH WASH...by dentist
Chlorhexidine Gluconate...rinse by dentis
Prochloperazine 10mg (generic for Compazine) for nausia if needed
Lorazepam 1mg for anxiety..sleeping

STAY TUNED...I'm sure I'm going to have a few questions on suggestions of some side effects down the road that could help me (or anyone else that happens to read this story).

Gary, It sounds like so far the chemo isn't causing you any nausea which is great, If it does, if the compazine works for you in preventing chemo nausea, you'll be one of the few here who has had it work. They started me off using compazine too but it was pretty useless after the first chemo treatment (although the suppositories did help somewhat when any pills I swallowed came right back up). You may want to see if you can get a prescription for Zofran, which is expensive but MUCH more effective if you run into serious nausea from the chemo.

Sounds like you are doing pretty well so far (I don't blame you for wanting to be ayt home and not nin the hospital for as long as you can).

Nelie

Gary, I also hope you can stay home while completing tx. John's mood and outlook on life is so much brighter at home. Please keep posting as your experience will help someone down the road. Best luck with this. Amy

ONE WEEK DOWN of the double rads plus chemo and now am on the 'off' week trying to regroup.

The treatments were no big deal at all but now the side effects are starting to show their ugly head a bit (after 10 rad treatments). The chemo part of the treatments have caused me no real problems yet (knock on wood there) but the Rad treatments are a different matter. Starting to get this steady flow of mucus like someone turned a faucet on. Then it will go a way for a bit....then back at it again. A major nusiance and why don't I think it will get any easier??

My WHOLE GOAL on this 'off' week is to try and find some sort of 'comfort zone' and experiment on things that will help make life a bit easier and to help prep me for the next run at it.

I'm definetly open for ideas here..............

One thing that's becoming apparent is I may need to seriously look into the 'peg' thing and soon. Swallowing has become a major challenge. Plus, the food I can get down (with major effort) is starting to really taste terrible. I mean it's kind of like I took a salt shaker...took off the cap and dumped the whole thing over my meal. YUK CITY!!! This combo of bad taste and hard to swallow is fast becoming a double edge sword that makes you have NO DESIRE WHATSOEVER to eat AT ALL. I just flat do not want to swallow anything....even water. And, that could be very detrimental to the healing plan and cause some major complications to develope I'm sure.

At least with a 'peg' I should be able to plan out and institute constant program to get the nourishment and WATER.

Now, to see how to 'fit it around' the ongoing treatment schedule without interupting it.

I'm being able to handle the drive back and forth so far no problem. Then again, it's only been ONE week.

Gary,as a caregiver who has watched my husband drop over 40 lbs. off his 5'10" frame,[weighing in at 127.2 lbs this am] and I can now count almost all his bones, I would urge you to seriously consider the peg even if you don't have to use it. It is insurance that you can stay hydrated and get proper nourishment. Glad to hear that you are faring well thus far. Amy

Gary,
Have they mentioned Amifostine shots to you for protecting the saliva glands long term as well as helping with the dry mouth. I know several hear have had them - but don't know if that could be part of your regimen. You take them every day prior to radiation. They however can also cause nausea. You sound like a real trooper - so hang in there. Treatments don't last forever.