| | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) |  Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
Don
It sounds like you have listened and really worked hard at following everyones advice and tis paying off. I did the same thing with staying home so not to pick up anything, very smart idea. Hope you continue to amaze your doctors with your progress. Hang in there, the last week and 2 weeks after tx stops can be rough. Keep up the good work.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Don,
There seems to be a small lucky few that do as well as you are doing so count your blessings and lets hope you continue to do well.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | David,
The end is just barely in site, but by what I hear I could take nose-dive before then, so lets just keep hoping for the best.
I just hope the big C isn't having as easy of a go with this -- that really bothers me.
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Don,
You can only do what you can do, ya know? And you are giving those cancers cells a good run for their lives and their money (or is it your money?). After that, there really isn't much more to do!
The waiting to know the results is hard, especially when you're right in the middle of it. I won't get scanned again until October, until then I'm going to trust that my docs got it right and got it all and that I'm gonna live another 30 years or so.
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | Margaret,
I am still able to swallow pretty well. I drink a lot of water, a little Plum juice, dark warm cocoa, and (bad tasting) coffee.
For my ENT, I am supposed to eat a little jello, pudding or noddles two or three time a day, but I have become a bit of a slackard due to the awful after-taste of everything.
My RO and MO seem to think drinking, as well as I do, and all the time, like I do, should be enough.
Also apparently this new program isn't focusing on the throat anymore but, the program will change again mid-week and move to the "boost phase" (not sure what that entails).
There is a bit of stiffness in my jaws and neck, but nothing significant and I have no problem opening my mouth (wide) or rotating my neck.
It is still a bit touchy back where they took out the tonsils and hurts when I yawn.
My neck dissection was just on one side and "selective". They just took out two lymph nodes and surrounding tissue. There were two ENT surgeons who agreed there was no reason to go beyond that, base on their visual and the PET.
The concern I have is that I still have seven more zaps, and what might those seven more do?
I really hope I don't have to deal with a lot of dry mouth (so far not so bad). My RO just grins and tells me they know how to shoot straight and there is plenty they aren't hitting -- I hope so!
So when is the the big "B" day? I am alway up for a big slice of cyber cake.
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Don - You are doing well! Wowza!! I'm not swallowing anywhere near as much as you are. Between the terrible taste in my mouth, the burning on my tongue and my throat, its just really unpleasant. My birthday is next month, the 20th, and I'll be more than happy to share some cake with you 
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Jul 2008 Posts: 228 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | Don-
I kept waiting for the ball to drop on my treatments and for things to get worse...I guess they did for about two weeks but it was nothing like it could have been - I hope that is the case with you. You sound like you are doing great! Just keep hanging in there and you will be done before you know it and eating out all the time! I still get these blister like ulcer things in my throat when I eat something that is too dry (my latest are breadsticks from Olive Garden in marinara, they're soooo good but they make my throat hurt for a few minutes, but I'm too stubborn to not eat them!).
Keep it up...the end is in sight!!!!!! Keep us posted on how you do this week...
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Hmmm bread sticks. I forget what they taste like as I do most of my favorite foods. Someday I will eat and it will taste normalt beyond the 1st bite. And another day close to that one I hope to make saliva again and get some dentures and go and enjoy. You are doing great so whatever you are doing, keep doing.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Jim,
You're optimism is so wonderful. One of these days, I'd like to shake your hand. And make you a wonderful smoothie!
You're the best, my man. The absolute best.
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Dip the breadsticks in the olive oil!
Our bodies are undergoing a lot of change, both taking in radiation and healing -- Things we observe in the short term may not stick around for the long term -- Excess mucous and drooling are good examples of this.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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