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Joined: Apr 2006
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just finished week 4 of treatments to 20 down, 1 treatments to go. things seem to be going well. lost my taste recently but its really just neutral so eating a spft diet of lots of creamy pasta that seem to work well as i am mainaining weight. That sore throat from a couple of weeks ago went away on its own and hasn't been a problem since. i sense the soars on my mouth getting worse but not yet bad enough to need magic mouthwash for eating. i takng everyone's advice and drinking alot of fluids. prob 6-8 bottles of water a day and a shake in morning. ot a bit tired last fri/sat and now today (friday). looking forward to going to the us open gof tourney on sunday as i scored a ticket and live very close. will be avoiding sun at all costs. haven't shavd since i started and have a few spots where beard stopped growing or hair fell out. funny looking. overall I feel good. followng in gary's footsteps. will post soon


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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my keyboard stinks and skips letters

meant to say 20 down, 10 left so 2 more wks


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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Warren, it sounds like you are doing great- Hope Patti is surviving as well:) 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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Warren....you da man and sounds like you're doing about the same as I did thru the 1st part. Just goes to show you that a good attitude and a bit of good luck and this can be handled in a somewhat reasonable manner.

It's about a month now since my last treatments and it's been some very good days and some so so days. No really terrible days. Biggest issue for me lately has been the fatigue thing. I can't hardly make it from my bedroom to the kitchen without a sit down break...lol. Kinda on the weak side. My mouth seems to be healing up very nicely and my lips (which were a mess thru most of the treatments) are almost 100%.

One other issue has just popped up that has me a bit concerned....it's becoming harder and harder to swallow all of a sudden!!! This is something that didn't bother me at all all the way up to just a few days ago. It's not that it's painful at all.....just HARD to do. It may be MY fault since I've avoided solid foods now for almost 3 months ( I just flat couldn't stand the taste). I should have forced myself to at least eat some solid foods...no matter how bad it taste.

So..if anybody out there is about to tackle this thing. East something everyday if you can.

Keep up the good posts Warren and it will be over soon.

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update -
25 treatments down, 5 to go so tommorrow starts my last treatment week. this last week was the first tough week with the mouth sores really turning the pain corner early in the week. felt like someone was stabbing my tongue all over the place. oxycodone and lydocaine wash doing ecently and i plan to insisit on patch tommorrow. pain is only baqd whe trying to talk lot or when eating but i've got the meds times pretty well now and its manageable.

i accomplished 3 major goals last week which were 1) to continue working and i plan to work the last week as well (somewhat shortened days) 2) went to golf US Open for last sunday's final round and most importantly 3)had a great 1st birthday party yesterday for my younger daughter Devan - i was feeling really good. i have found that working throughout this process has really hlped me mentally eve though i'm clearly less productive than usual.

had a handful of severe nausea bouts which to me are the worst of the side effects and am on zofra to help with that. it was really only 2 incidents and when i was in a car for an extended period of time. my taste isneutral at worst so i am still able to eat soft foods and get shakes down no prob.

can't believe i only have 5 more treatments, wnt faster than i thought it would. my wife is holding up like a champ taking care of a 1 yold, a 2.5 yr old and me.

will post after last treatment.

Gary - sorry to hear about your swallowing issues. occasionally i am having issues where i want to swallow and it just doesn't want to work. can easily swallow liquids, its only when i have nothing in my mouth. taking your advice and tring to avoid a 100% liquid diet.


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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Warren,
It sounds like you are doing very well under the circumstances. It also sounds like you are really pushing yourself. Nearing the end of radiation I began to feel tired and although I would buzz into the office for a little while and check mail, etc., I certainly did not work too hard or try to accomplish too much. Unfortunately I began to feel really worse and hit my lowest spot just after radiation treatments ended. I don't mean to pass on depressing news, but most of us had the same experience of feeling our worst in the first couple of weeks after treatments ended. The good news is that, in time, this passes as well.
I just finished playing in a three day golf tournament in the hot Texas sun with temperatures in the 90's...and did pretty well. So, there might be some bad days, but you have a lot to look forward to. Best of luck with your recovery.

Regards,
Danny G.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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Warren-Kudos to your wife and "great going" to you. But p;ease do pace yourself for the final treatments. John hit his lowest point after rad was over and needed lots of sleep for several weeks. 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 you had a video swallow yet...you may have a stricture which can be dilated.


Kerry/wife of stephenm
StageIV - Base of Tongue T4N0M0
XRT x42 / Taxol and Carboplatin x4
Tx. Finished 5/08/06
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thanks for the advice on pacing myself. my treatment and work are in new york city, about an hour from my house. lately have been going to office given i have to be in city anyway for treatment. plan is to power through these last 4 days of work/treatments then take off afterwards for as long as necessary when i don't have to leave the neighborhood.

haven't had any swallowing tests yet.


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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Usually swallowing tests are given about 6 weeks or so after end of treatment to allow worst of the inflammation to subside, and for raw tissues to heal somewhat. Ask your ENT about thie scheduling...these are very important, really helped my husband get his eating back on track quickly -- he had a number of exercises, some of which were very hard to do at first, even though he had eaten all through treatment and perhaps might have been considered "good to go" if it had not been for the swallowing exam. (He was aspirating food silently, also muscle weakness and minor epiglottal malfunctioning.)

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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