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garyock Offline OP
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Figured it was time to move my 'weekly' log over to the AFTER TREATMENTS and keep you posted on the 'recovery' process and how it affected me.

1st off...have some good news. I thought I had ONE more rad treatment but, the rad Dr called today and said I don't have to come back. He did some calulating and saw I had ENOUGH already (boy did I agree with that).

YEAH!!!!!!!!!!! That saves me one 60 mile round trip.....things are lookin up already.

Now to how do I feel at this point??

No real pain other than a bit when trying to swallow stuff...which is good

No nausea...which is good

No voice (or very little) which Dr said is not unusual at this point. Funny thing is I didn't even realize this until Dr called and I tried to speak....my mouth moved not much came out. Since I'm working at home thru this...I go days without talking to anyone...not even myself..lol. Maybe I should start singing or something.

Did have some major FATIGUE issues right at end and couple days after treatments ended. But, happy to report, energy levels much better now.

I'm just now laying around waiting for the 'mystical' LOW point everybody says you get a week or three AFTER treatment so I can start the road back. I'll let you know if/when that little bugger shows up.

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Way to go Gary laugh 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, the low point to which you refer is not cast in stone - I just got better and better and I hope that is how it works for you too. Congratulations on making it through!

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Gary,

Sounds like your a trooper! Keep up the great attitude and heres to not hitting that low...

All my best, Kerry


Kerry/wife of stephenm
StageIV - Base of Tongue T4N0M0
XRT x42 / Taxol and Carboplatin x4
Tx. Finished 5/08/06
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garyock Offline OP
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TWO WEEKS POST TREATMENTS....

Actually feeling prety fair. No pain...no nausea and the mucus has dissapeared so I'm sleeping very good at night.

Went to brunch with a few friends. This is first attemp at eating SOLID food in about 2 months. It went so...so. Was able to handle the fruit and some scrambled eggs and even a little bit of biscuits and gravey. Was able to eat about 1/2 plate. I figured that was not too bad. It tasted a bit better than I thought it would.

Fatigue (my biggest problem since end of treatments) is getting a bit better each day. A few less naps as days go on.

Still losing weight at steady pace of about 4lbs a week (which is fine with me). Dr not too worried about it considering my staring weight and it's been steady and not HUGE chunks at a time. Still hydrating at home with the bags of stuff which has been a big help since I never was much of a water drinker.

Looking forward to next week or so when they give me some catscans...tests, etc. to see how the treatments did their thing??

AND THE BEAT GOES ON.............

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JAM Offline
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It's good to hear this- keep on keeping on.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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all sounds great. i;m ignoring tis low point concept given i'm only a bit behind you. my docs said 2 wks and close to normal, although i'm lucky in not getting chemo

congrats again


SCC on left side of tongue 12/01 left partial glossectomy, left neck disection (clean), recurrence 3/06 on back left of tongue, 2nd partial glossectomy, no nodal inolvement, IMRT completed 6/30/06
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garyock Offline OP
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ONE MONTH POST TREATMENTS....

Some real progress on some things and NOT on some others.

Progess....my mouth is heling very well. My lips were a diaster area through most of treatments, but they are almost 100% now.

No Progress....fatigue is still kicking my butt. Sleeping a bunch lately.

Also...new issue has popped up that NEVER bothered me before. It's getting harder to swallow all of a sudden. Not painful...just more and more difficult. I'm have major problems even trying to swallow an asprin.

I'd be very curious if anybody else has had this happen to them AFTER the treatments and did it fix itself with time or did it have to be helped along with some sort of 'proceedure'????

Got me a bit concerned since everything else was going so well to date.

Think the Dr will be scheduling me for some catscans, etc in a week or so to see how treatments did their thing? Also, probably looking at 'neck dissection' in near future.

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Hi Gary --

Have you been scheduled for a barium swallowing evaluation? (Would probably be about 6-7 weeks post-treatment). This can help determine if your issues are due to residual inflammation, healing sores weakness of the swallowing muscles, or to the development of fibrosis or scar tissue -- if the latter it would need to be addressed as it can get worse over time. Usually the swallowing therapist will prescribe a series of exercises to do and will re-check for progress.

My husband's therapist emphasized that these concerns need to be dealt with early on and that the exercises may need to be continued indefinitely, as deterioration of swallowing ability can "creep up" on you months after treatment, due to radiation damage.

A barium swallow test is routine at most of the CCCs which deal with a lot of oral cancers; ask your doctor about this. Even our two local hospitals have swallowing therapists and do these tests, it is not limited to the largest institutions.

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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garyock Offline OP
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Gail:

YES...I have a swallowing test scheduled in about a week or so. Guess I'll find out what's what then. Meantime...I'm swallowing as much as possible (liquids only) right now to try and get function back to somewhat normal??

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