| | Joined: Nov 2009 Posts: 92 Supporting Member (50+ posts) |  Supporting Member (50+ posts)
Joined: Nov 2009 Posts: 92 | Kelly,
Kudos. Your treatment story gives hope to those of us who haven't started yet; it sounds like you've been a real trooper. Good luck with your ENT.
- Pam
44 at 10-26-2009 Dx; SCC, T2N2b, St.IV BOT; Rt. Tonsil out; PET 11-12-09 (3 spots); 3 rds Cisplatin, Taxotere and 5-FU started 11-19-09; PEG 12-24-09; 7 wks chemo-rads done 03-16-10. 06-28 CT/PET watching 1 node; PEG out; 11-15 CT - larger; 11-23 PET activity up; mrdc 12-21; 04-01-11 CLEAN SCANS! ; March 2018 new SCC - Meet with surgeon 4-4-18
| | | | | Joined: Jun 2009 Posts: 13 Member | | Member
Joined: Jun 2009 Posts: 13 | Kelly,
Keep up the good work and be patient. Enjoy that steak!
Bob
Bob, age 64, reformed smoker since 3/85, moderate alcohol,
Right tonsil, 5/20/09 tonsillectomy, T2N0M0, IMRT started 6/17/09, ended 8/3/09, 33TX, no chemo, 11/6/09 & 7/21/11 PET/CT Scan clear
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Kelly...congratulations!! That is wonderful news..you must be so proud!!! Sounds like a nice juicy tender steak will be good. Just cut it real small and swallow it with some mashed potatoes!!
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Nov 2009 Posts: 4 Member | | Member
Joined: Nov 2009 Posts: 4 | Kelly,
Your a real tiger. What were you able to swallow through your treatment. Maybe could help me get my boy friend through this without getting a feeding peg. Thanks! | | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Kyle,
I did not do chemo so I had no nausea. I did have the pain that goes with the radiation but I was able to stay hydrated (2 liters of water a day religiously) and I had two weeks where I was liquid diet only. As you might notice from my first post on this thread, I had times when I wished I did get he PEG but made it through without.
If your friend does not get the PEG, he must be ready to have it put in at the first sign of trouble with either hydration or ability to eat (either solids or liquids).
This takes some real dedication to force yourself to follow that routine even when you know your going to hate eating today. Drinking that water when its not pleasant is not optional. Its hard work.
Kelly
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | 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 | There is also the NG tube that is inserted into the nose and into the stomach that works like the Peg tube. There is no surgical procedure but it is meant for temporary situations.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Kyle
I have had both a PEG and a Nasal Gastric tube and while they both suck, the Nasal Gastric tube sucks harder. You cannot get rid of the mucous which is choking you with a NGT. Yeah, it is temporary but worse than a PEG. And I HATE Pegs with a PASSION.
I got through my first treatments without a PEG and have never regretted it. (Even though the medals I gave myself for avoiding a PEG were imaginary)
Charm
Last edited by Charm2017; 11-18-2009 05:41 PM. Reason: typos
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | OK Charm, how do REALLY feel about that Peg!!! lol
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | GOOD NEWS!
I met with my ENT today for my 1-month post radiation checkup. He was very happy with the results of the radiation. He said he saw no residual issues and no indication of any cancer (I'll still have to wait a while to get the PET Scan).
He said that because of the location of my cancer his visual and palliative probing are very good indicators of my progress and he feels they got all the cancer.
I'll still have the checkups every 6 weeks for a while, then every three months then six months then yearly for the rest of my life, but he was very encouraged that we got a great result here. It can come back, he didn't pull that punch, but he felt the odds are definitely in my favor that it will not, as we got this early.
I know from reading this board that I'll never be completely free of this disease even if I never get it back, but its great to hear the good doctor say he does not expect that to happen.
My next checkup is with the RO for the two-month look-see. I'll be scheduling the PET with him for month three when they say enough healing has taken place to limit false positives.
Kelly
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | Joined: Sep 2009 Posts: 60 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2009 Posts: 60 | Great news.
I'm just a couple of hours north of you. I got my treatment in Petoskey.
Flip
_________________________________
Age: 54 SCC Tonsil + 3 nodes
Radiation and Carboplatin
Treatment 4/1 - 6/7/2009
No surgery, no PEG
Never smoked
Drink socially (brew my own beer and love wine. A bottle of scotch lasts me a couple of years)
CT 11/4/09 No sign of envolvement in Tonsil or nodes
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