 
#45722 07-28-2005 01:10 PM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Jun 2005 Posts: 349 Likes: 2 | PS: Barb, what are you down to ..?
Just 7 or 8 ?
YEAH!!!!
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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#45723 07-28-2005 01:51 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | THe port is a surgical implant. They'll find 'em -the folks in infusion are usually pretty highly skilled. I responded so well to treatment they shortened my infusions to 2.
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#45724 07-28-2005 04:20 PM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2005 Posts: 349 Likes: 2 | Yeah, the "surgical" part of 'surgical implant' is the reason I've been reluctant.
I'll avoid one if possible...We'll just have to see.
Sometimes I can still "feel" one of the drainage tubes as if it weren't ever removed, so I am not looking forward to how weird the G-tube is gonna be.
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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#45725 07-29-2005 03:55 AM | Joined: May 2005 Posts: 497 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2005 Posts: 497 | Well I have 6 left. Sorry to say they are thinking of making me take a break because my neck is a mess with the fat oozing right out of it. Its pretty nasty. They said no treatment Monday til the doc sees it. I usually see him right after treatment but they said not Monday gal you are seeing him first!
Man I just hope it heals up some over the weekend. I doubt it but I am hopeful. Take it one day at a time Michael. Never look back and never look ahead. Today is enough to deal with.
God bless,
Barb~
[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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#45726 07-29-2005 06:50 AM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2005 Posts: 349 Likes: 2 | Barb~
Is there ANYTHING they can do to help with the neck healing???
Surely there are topical treatments that would help?
What kind of Dr are you seeing??? A dermatologist I hope! Especially one with oncology training...
Be agressive with them...There has to be SOMETHING they can do.
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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#45727 07-29-2005 09:21 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Michael,
I think you had better ask for something stronger than the GelCam for the flouride trays. Gary or some suggested Butler's. While I use the Gelcam religiously, I am still going to wind up eventually having all my remaining teeth capped. I am going to call my dentist when I get back from vacation and ask about Butler's or something stronger also. I'm tied of making him wealthy.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#45728 07-29-2005 03:23 PM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2005 Posts: 349 Likes: 2 | Good points Eileen...
I just got back from the Dentist! UUUgh! If ONE MORE PERSON has his/her hands in my mouth I'm gonna scream!!!!!!!!!
I am so sick of Dr's offices I can't tell you!
Anyway, he did FOUR FILLINGS! All resin, he argued that resin is the best, who knows?
I guess the dentist in this little one horse town knows more than the entire Dental Oncology teams at MDAnderson and Sloan :-) They said metal is fine.
I think I like the resin better, I just hope it's ok for radiation, long term holding power, etc.
Then, I got a DEEP CLEANING...UUUGH! My poor mouth!
Frist the radical tonsilectomy, then 2 wisdom teeth extracted, now 4 fillings and a deep cleaning...AND the worse part (radiation/chemo) is yet to come...
Hope I can get through it...The pain from last Friday's (1 week ago) extraction is still bothering me...I feel like a big baby. People get teeth extracted all the time and it doesn't hurt a week later, does it?
Now my gums are bleeding from the cleaning and the lidocane is wearing off...the injection points are starting to throb with pain...
Guess I'm gonna go hit the Vicadin bottle...or maybe Tylenol 3 w/Codene...or maybe Ibuprofen ''600's...or maybe Tylenol XR...or maybe.........
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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#45729 07-29-2005 03:41 PM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2005 Posts: 349 Likes: 2 | I just went back and reread some of my early posts. I wanted to take a minute to THANK everyone here!!! It was ONE MONTH AGO that I had my surgery. I was frantic about the effects of the surgery, and to be honest, I've been serving guests breakfast since 5 days after the surgery. I've been greeting people, talking to people, and out in public... NO ONE notices unless I point it out. I do still have a little swelling on the Left side, but not horrible, and getting better everyday. I remember being scared to death of what the surgery would do to me, make me into a troll, or hermit, but honestly, It's not that bad, and it has only been 1 month TODAY! Anyway, thanks again...I know we've discussed the pros and cons of having the surgery, and today, I am genuinely happy I did it, and had a talented surgeon. I have full funtion of my arm, and even my smile seems to be returning... All this positive commment and I haven't even taken the drugs yet 
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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#45730 07-29-2005 04:05 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 | .K., I'm making an assumption here that peg tubes and G tubes are the same thing.If that's wrong, someone please correct me. And even tho I'm not the one with the PEG,it doesn't seem to me that it is such an awful thing. I thank God every day that the surgeon put John's in during the tumor surgery. It is keeping him alive as we speak. Michael, I remember you "loving New York" a few posts ago. Don't get too down on us now. Think of those glorious waves coming in to the shore- time after time after time. You can do 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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#45731 07-29-2005 04:20 PM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2005 Posts: 349 Likes: 2 | I have always assumed PEG tubes and "G" Tubes are the same...Maybe like PIK lines and HICKMAN Lines are virtually the same things. I am not 'down' at the moment...I feel pretty good, except for the various pains in my mouth...but none of these will kill me, and all are temporary The high here was 68 today...It is SOOOOOO beautiful! NY is having another heat wave...If this 2 months of NY in the summer doesn't get it out of my system, nothing will :=)
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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