#46833 05-05-2006 03:07 PM | Joined: May 2006 Posts: 7 Member |  Member
Joined: May 2006 Posts: 7 | Firstly, thank you to everybody who has responded to me as everythng really looks like great advice. I've got my mom combing through this thread as well as others to gather all the things I will need throughout my radiation process.
JAM, you will laugh but we actually have a secret room in our house that our kids don't kow about and sounds like i will be speding alot of time there. never planned on keepin it a secret for this reason.
One more question I have for everyone is the plan of radiation they gave me. I ha a .5cm tumor on back left side of my tongue which was removed with thin deep margin and in situ carcinoma on medial margin. Sloan is recommending I get high dose IMRT on left side of tongue and lower dose on right side. They dont plan to radiate my neck area on either side as they think it is very unlikely cancer spread to nodes. Do people agree with this approach or should I insist on being aggressiv and radiate the neck. What are the additional side effects of moving down to the neck. Isn't it good to save the ability to radiate my nodes in the future god forbid i need to? | | |
#46834 05-05-2006 03:18 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Warren, I won't venture to second guess Sloan, but I will say that I am really glad you have a "secret room"- and I hope your wife gets to use it every now and then too.  Are you eating alot of great food now? Please do. 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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#46835 05-05-2006 03:26 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Warren, I'm not going to second guess Sloan either. It does sound like you had a very small tumor. I'm guessing things like the swallowing problem I have had for the last year wouldn't have a chance to happen when the neck is not radiated. Be grateful you're getting off this easily (and trust me it won't seem all that easy--so eat up!)
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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#46836 05-05-2006 03:32 PM | Joined: May 2006 Posts: 7 Member | | Member
Joined: May 2006 Posts: 7 | I'm anxiously waiting to eat up but unfortunately stil recovering from the 4 wisdom teeth they made me have extracted the other day. i still have a few weeks and have made lists of everything i plan to eat
warren | | |
#46837 05-05-2006 04:50 PM | Joined: Nov 2005 Posts: 306 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2005 Posts: 306 | Warren, I'll guess the Sloan folks know what they are up to. If they do a 'boost' or 'field' as part of your IMRT, your neck nodes will get a pretty good dose. Your tumor was/is small and that really helps the IMRT plan be really focused. Don't forget to do the tooth fairy thing with those wisdom teeth  . I had all mine pulled and didn't get to keep a single one. I'm guessing my oral surgeon scored big on that deal. Be strong. We are with you, Tom
SCC BOT, mets to neck, T4.
From 3/03: 10wks daily multi-drug chemo,
Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
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#46838 05-17-2006 05:13 PM | Joined: May 2006 Posts: 7 Member | | Member
Joined: May 2006 Posts: 7 | So tomorrow is Day one with i think the dry run session. 33 sessions to come high dose to left tongue and lower dose to right tongue. thanks to everyone for helping me to ge physically and mentally prepared for this. gained 7 pounds since i first read to bulk up finishing up tonight at peter lugers. you will be hearng from me soon | | |
#46839 05-18-2006 02:44 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | we'll be thinking of you......
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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#46840 05-18-2006 01:19 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Warren, glad to hear you have gained some weight. Get your "secret room" stocked with liquid goodies for when rad starts. Best luck. 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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#46841 05-18-2006 08:17 PM | Joined: Feb 2006 Posts: 45 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Feb 2006 Posts: 45 | OK....get ready to strap that 'mask' on and take the ride. The rad treatments are a piece of cake..it's what will they do to you that side effect wise that will make it interesting.
Everybody gets most or all of the usual stuff like Mucus flow, nausea, pain, fatigue, etc. It comes down to the DEGREE it will affect YOU and EVERYBODY IS DIFFERENT!!!!!! Just can't stress that enough. You just flat don't know until you go through it.
Good luck..... | | |
#46842 05-20-2006 01:15 AM | Joined: May 2006 Posts: 7 Member | | Member
Joined: May 2006 Posts: 7 | From Warren - always seem to be logged in under my wife
1 down 29 to go (they chanhed it to 30 bec notgetting my nec radiated). Gary, learned quickly you are right on in that the physical aspect of getting zapped will be the easy part. Also, surgical gloves for aquophor application a brilliant idea.
Any thoughts from everyone on how quickly i might start losing taste and feeling fatigue | | |
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