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garyock Offline OP
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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

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garyock Offline OP
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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.

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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


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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garyock Offline OP
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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.

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garyock Offline OP
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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).

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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


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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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


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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garyock Offline OP
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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.

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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


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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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.


Caregiver to Father:Stage III unknown primary; modified left side neck dissection 2/2006; 8 wk trmts of Erbitux 3/2006 with-37 radition treatments; 11.2010; biopsy of base of tongue results questionable. 9.2013 tumor on left side of tongue; squamous cell cancer. 10.2.2013 Hemiglossectomy(1/2 tongue removed) with reconstruct tongue using left thigh tissue;surgery included IORT.
25 additional IMRT radiation trtmts & 5 wks/chemo. Carbo & Taxol combo.NPO;100% PEG depend;aspiration pneumonia 3/2014
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OK...2nd 'on' week of two a days rads and chemo week in the books. That 20 rad treatments down.

Side effect status....

No Nausea yet period....knock on wood.

Mouth/tounge sores starting to build a bit. Ulecerease helps there and NO pain yet. Dr. did give me script for Hydrocodone (liq) if case something comes up during 'off' week.

Biggest thing on the mouth sore thing seems to be my LIPS are a bit swollen. Using some samples of Aquaphor and Biafine that seems to help. Anybody else got any suggestions???

What's strange to me is EVERY day is DIFFERENT big time when I wake up on what I'm facing as far as side effects. One day it's the attack of the mucus (I have been taking Mucinex tabs that seems to help here a lot). The next day it's the harder to swallow thing. The next day it's the super dry mouth thing. The next day...sort of normal (NO mucus..NO swallowing problems). Weird. Not what I expected. I expected symtoms I've read about here to start and just get worse and worse. Not completely come and go.

The ONE thing that IS constant is I'm still losing my total desire to eat. I've been experimenting every day and just can't find ANYTHING that even resembles tasting decent.....period. A good tasting..satisfying meal is just a memory now which is a bit depressing. The best I can do is come up with some things that are tolerable to get down just so I can get the nutrition I know I need. Most of the time it's at least 4 cans of Boost w/protein and a couple litres of water day as my minimum goal. I'm dropping weight like crazy (had about 180 excess to start with) but the Dr. doesn't seem too concerned yet. My blood work keeps coming up good and I'm not feeling overly fatigued or anything (if anything...I've gained a bit of pep in my step from weight loss), so losing the weight is kind of something 'positive' thru this ordeal .. in my case in a way.

Still drving the 60 mile round trip to treatments twice a day and having no problem there. Sure hoping I can continue to do it this way and avoid that 'hosptial' stay option on those 'on' weeks...hopefully the WHOLE way. I think the pain meds if/when needed down the road will play into this.

Nobody has mentioned the Amifostine yet. Not sure I'd want to go that way or not? Been able to avoid the nausea thing totally so far and wouldn't want to push that envelope since my nutrition is almost bare minimum as it is. Any loss of nutrition and/or hydration due to vomiting could defenitely complicate things.

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Way to go Gary! Sounds like you are doing great so far, even with the loss of appetite.{Did you really weigh 180 lbs more than you should have when this started?} If so, You should really have a spring in your step at this point. Best wishes to you. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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OK...ready to start 3rd 'on' week of double rads plus chemo today.

What I've found so far is the 'off' weeks are harder than the 'on' weeks. Must be because on the 'on' weeks you running around so much getting all those appointments in your mind is off the effects a bit. And, the 'off' weeks is one big chore trying to cope with the effects.

Yes JAM...I definetly was about 180 lbs overweight on 1/1/06 weighing about 390lbs. I was diagnosed about 1/19/06 and right now thru results of treatments and effort to lose some weight in Jan I'm at about 340lbs.

I was actually losing TOO much weight the past couple of weeks and sort of went into dehydration. They came pretty close to checking me into hospital to contol things. Instead they set me up with 'home care' people for bags of good stuff to drip into my 'port'. I like that more than laying in a hospital bed all day. It's easy to do and take care of. The 'port' was an absolute great decision at beginning of this. Don't even think twice about getting one. I haven't been STUCK with a needle in the arms or wherever in over 2 months now.

Oh well...got to gear up for my 2 a days.

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GAry, Can't think of a tougher way to lose weight, but over the long haul, it's got to be good for you to be slimmer. I am going to insist on a port for my husband when he starts chemo [soon] His veins are really hard to hit. Hope you continue to handle this so well- do try to stay hydrated because that is really important. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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Way to go Gary.
It sounds like things are progressing normally. As you know, I went through the same "2-a-day" protocol you're going through.
You're right, the off weeks seemed to be the toughest. The side effects seemed to peak on Wednesday or Thursday, and just about the time I started felling pretty well, it was time for another week of 2-a-days.
Keep up the hydration, and be careful not to fall in love with the weight loss. It's still important to get nutrition to help with healing.

Hang in there,you are almost half way there.

If you still have my phone number, give me a call, or drop me a PM and I'll send it again.

Good Health,

Chuck


SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun.
It's always something
"Adversity doesn't build character, it reveals it."
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garyock Offline OP
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OK...THREE weeks down of double rads plus chemo. That 30 rad treatments. Guessing about 15 to go there. Seemed to have zipped by so far.

Still able to drive myself to treatments twice a day (about 60 miles roundtrip) no problem at all so far. But, then again, have had no real major pain issues so not taking anything real serious for that. I do NOT want to do this from hospital and will make every effort to keep it this way.

Food still tastes so bad...just don't want to eat. Forcing down about 3 Scandishakes a day (which is better than trying to get down TWICE the amount of Ensure or Boosts). To me so far, this is most depressing part of this thing is that I can't enjoy ANY food at all. I sure hope this solves itself down the road. This liquid diet thing can get pretty darn boring. Weird thing is I should be 'hungury' you would think. Just not. My poor stomach must be the size of a postal stamp by now???

Staying extra HYDRATED thru the port with the stuff (about a liter a day) 'home care medical provider' has set me up with. Very easy and highly recommended. At least I can feel secure that I'm getting the minimum probably needed in that area and any water I can drink during the day is a bonus.

One WEIRD thing that has happened is one morning I got up and the 'balls of my feet' were really sore (and still are)???? Guessing the good old 5FU had something to do with that?? Anybody else experience this? Anything to be worried about. Will it go away soon?

The mucus thing comes and goes still. I'm thinking the Mucinex Tabs I'm taking twice a day (12 hr release stuff) is really helping keep it in check a bit.

Getting a real nice sunburn in neck area for sure. Trying to keep it coated using Aquaphor after 2nd rad treatment each day and on off week. Nothing really bad, no peeling, or major sores yet.

The burning lip thing seems to be getting better or I'm getting better at taking care of it. Every time after sleeping it's a routine to get lips back in shape a bit with some care.

All in all....feel lucky so far I've avoided some of the issues I've seen posted on here like the Nausea and Pain that some have experienced at this stage. KNOCK ON WOOD!!!!!

Now for the 'off' week and see what fun stuff that brings.

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Hi Gary,

Happy to see that you are handling things so well. Good luck with the balance of your treatment.

Although I never had chemo or radiation I know some things from one of my partners who has been on chemo for 3+ years for multiple myeloma. I would look into "peripheral neuralgia" for the problem with your feet. Not sure if this is it, but it's a place to start.

I'm sure you will hear from others here that have had the same thing.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
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Gary - keep the posts coming. i'm starting radiation in 2 weeks and have found your postings very helpful. good luck

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FOUR weeks down of double rads plus chemo.

Kind of seeing the light at the end of the tunnel now.

The good news.....

1. Still never have had ANY issues with nausea...knock on wood
2. Still never have had ANY issues with pain...knock on wood
3. The past week they really cut down the 'field' of radiation and now the treatment is only taking about 8 minutes. Guess this is really good sign things are finally winding down.
4. Swallowing function seems as good now as when I started. Too bad food taste so bad I can't use it more.
5. Been able to make the 60 mile round trip drives no problem for treatments.

The bad news (which ain't that bad)....

1. The past couple days I feel like I've been hit with a Mack Truck. The 'fatigue' card is being played now and I'm really getting tired of being tired.
2. Any solid food still tastes SO BAD I just don't even want to even attemp it. I'm doing this without a peg and the Scandishakes are working out just fine.
3. My face/neck/back of neck has that three-tone look now (places where radiation never hit, places where new skin is coming thru, places where it's pretty burned and will be soon. A bit of a nusance...but not too bad I guess. No real pain to speak of yet.

The way I look at it....I've had a few goals thru this....

1. To finally get treatments started (it seemed like it took forever).
2. To make it THRU the treatments with as few complications and bad side effects as possible.
3. To reach that mystical 'low' point which is supposed to be about 2-4 weeks AFTER treatments.
4. To begin the 'healing' process and get my life back to normal.

With one more week of double stuff it will be TWO down and TWO to go.

Now to see what fun stuff my 'off' week brings. It's always something.

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Gary, It sounds like you are doing great smile Keep it up. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
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garyock Offline OP
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One important 'goal' I forgot to mention above was .. To make it thru this thing WITHOUT DOING THE HOSPITAL 5 DAYS A WEEK THING. And, it's looking like I'm gonna make that one with only ONE week to go. That is a BIGGIE to me. I just flat don't like hospitals. Way too many sick people laying around feeling miserable and bored.

It's 1:30 Sat morning (I do keep some real odd hours these days) and feeling pretty darn good and ready to take on that last week. No major issues popped up this week other than the fatigue thing and have been sleeping about 12-14 hrs a day. The good news is my sleeping has been much easier than say about the 2nd or 3rd week into this thing. Only have to get up every couple hrs or so to go to the bathroom (from the hydration I'm taking). The mucus thing has not been that much of a problem (thank you mucinex).

My 'sunburn' seems to have peaked for the week and not too bad. I've been pilling on the Aquaphor 'goop' and that seems to have helped a lot. A helpful hint on applying this stuff. Use a 'surgical' glove...then when your finished just throw the glove away. That stuff is super goopy and is almost impossible to get off your hands.

The swallowing pain seems to come and go. One day it hurts a bit....the next no problem??? Many more good days than bad.

I had thrush going there for awhile...but the pills the Dr prescribed seems to have taken care of that.

Can't say enough for the Scandishakes (at least they have worked very well for me). I mix up about 3 packages EVERY morning in a blender with some protein powder to boot....then my goal is to finsih it off by end of day. That's about 1900 calories (counting the protein powder). They go down very easy. Plus the bag or two of 'stuff' a day the home care people set me up with every week that I hook up thru my 'port' (another must have). I'm gettin pretty darn good at hooking this thing up and getting it flowing. Maybe I can be a 'home nurse' part time after this??? Another little helpful hint....put up a couple of those little hooks in strategic places you can screw into ceiling to use to hang the bags. That works better than the flimsy stand they sent. And, I feel I'm getting the hydration/nutrition needed each day.

I'm still losing weight (at about 320 now...that's 70 lbs from 1st of the year...and 50 lbs from start of treatments). I keep telling the Drs..hey, a person my size to begin with loses weight on a 2,000 calorie diet a day. My blood pressure is still very good and my blood counts each week are in the good range....so nobody is freaking out too much other than my nutritionist. I feel good so let her fret.

SO...ONE MORE FREAKING WEEK OF THIS STUFF...BRING IT ON!!!!!

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Way to go Gary! Best of luck for that last week.

Give me a call when you've got the taste buds back, and it'll be my treat at the new Famous Dave's Barbeque up in Kenosha.

Hang in there, and don't hesitate to call.

Good Health,

Chuck


SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun.
It's always something
"Adversity doesn't build character, it reveals it."
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garyock Offline OP
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OK...you're on Chuck. But, something tells me it may be a while.

Every since you told me about the BBQ joint I've been having dreams about how it will taste once I get back in the saddle taste buds wise.

YUM...YUM

Really something to look forward to.

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garyock Offline OP
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IT'S A DONE DEAL.....almost.

Just finished my last double rad/chemo week. That's 50...count 'em FIFTY rad treatments. And, believe it or not I have ONE stinking rad treatment left in about 10 days. But, the chemo is done and I can throw this damn 5FU pump against the wall or something.

I did it without checking into the hospital which I'm proud of. It was a TON of driving. 50 treatments x 60 miles round trip equals 3,000 miles.....like driving from Boston to LA??? But, it was worth it not having to stay in stinking hospital laying around all day being bored to death.

The only issue I'm having right now is the fatigue thing. Really tired. I'll tell you those last couple round trips to CC where a little tough this past Thur/Fri. But, I made it and it's a done deal now.

My face (from just below nose to lower neck) has all new skin ... pink and smooth as a baby's butt.
Haven't had to shave in over 2 months now...that's a good perk.

Since treatments are now done (or almost...just one stinking rad treatment) ... it may be time move this thread over to the AFTER TREATMENTS board to continue the story.

It's been my goal all along to provide just one man's story thru this ordeal with the hope it will help someone else down the road.

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Hey Gary,

Congratulations, great news and I will be looking for you in the "After Treatment" section. You are certainly an inspiration.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
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