| | Joined: Sep 2009 Posts: 60 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Sep 2009 Posts: 60 | Hi;
I wish I had run into this group a few months ago. I am now done with treatments. I had SCC of the tonsil, spent a year fighting an ear ache that the doctor thought was an allergy. I felt something hitting my tongue one day, looked and saw the papilla of my tonsil were swollen enough to hit my tongue.
I kept trying to convince the doctors that I had something else, but a biopsy showed cancer.
The tumor was golf ball sized, lymph nodes under my jaw and behind my carotids were all involved.
35 radiation, 7 carboplatin treatments and it seems to be gone.
I did not get the PEG, which forced me to keep eating. I lost 25 lbs, but kept going OK.
I feel(and my doctors agree) that I went through treatment quite well. I'm just hoping I can get to where I can eat hot peppers again.
Flip | | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | I finished tx 11-4-2008 and I just started to eat spicy food about 3 or 4 weeks ago...I believe you'll be fine
Last edited by Ray1971; 09-29-2009 03:18 PM.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Sep 2009 Posts: 229 | Welcome!
I've learned so much from reading the home page and from everyone here. There's a wonderful mix here and I'm glad to be here too.
A hot steaming cup of coffee and some spicy chili are on my list of things to do! LOL I'm just glad that one day I'll get there.
Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Welcome. Glad you finished treatment and are recovering. This is an awesome place for support and I love it here. This is my second home. 
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Sep 2009 Posts: 60 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Sep 2009 Posts: 60 | I was able to do coffee again after 8-10 weeks. Mouth is very dry. I might have to get used to that. But, hey, I'm alive.
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
| | | | | 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 | Flip, Did you get tested for HPV? Oh and congrats on surviving the Tx. I see you had Carbo. It's about time they switched from Cisplatin. Where were you treated?
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: 60 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Sep 2009 Posts: 60 | They just assumed it must be HPV. I am uninsured so they stayed away from any tests they did not deem vital. They used Carbo because my hearing was already bad and cisplatin is supposed to really impact it. Carboplatin still did a number on my ears. I am hoping to get money together for a hearing aid. In the office, I see lips move but sometimes cannot make out the words. I was treated at Northern Michigan Hospital in Petoskey, MI. They are a wonderful bunch up there, and other than the payments I will be sending them for the rest of my life, I have no complaints. I do computer contracting and own a campground. When my contract ended, I lost my coverage and could not afford COBRA, thhen the diagnosos hit me. I am working in Orlando now, 1400 miles from my wife and support.
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
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Hi Flip and I am another in debtor that will make payments the rest of my life LOL . I hate to sat welcome, but seeing as you are here and are one of us.. Welcome to the fold. These people are all fantastic and between eveyone,, we have all bases covered. Seems you did pretty good.
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: Sep 2009 Posts: 148 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 148 Likes: 1 | Hi Flip, I am a new member here also. Every second that goes by, the closer our recovery progresses. May your desire to eat hot peppers be the only issue you will ever have to face again !!! I am so happy for you ! What a trooper you are to have not needed the peg tube. To me, everything tastes spicy & hot, so if anything, I'm always trying to tone it down ! Keep growing stronger & healthier with each new beautiful day ! Dianne MH
BOT T3N2M0 No surgery, 38radiation treatments,4 chemo rounds, peg removed 11/08, still have a port. Treatments ended 6/20/08. So far, so Good ! "I know God won't give me anything I can't handle. I just wish He didn't trust me so much !"
*** Admin update --- Dianne has passed away on August 25, 2015 ***
| | | | | 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 | No one can assume your cancer was caused by HPV and it's a shame they didn't get your cancer slides tested so you would know for sure. If tobacco was not a factor then statistically there is a 70% chance your cancer was HPV+ if that's any consolation. Anyway, I'm glad you made it and I also did not have the PEG so I probably know what you went through as I lost 30 pounds myself. Even with the PEG others have lost many pounds so it just depends upon the individual. I have never heard that Carbo can also cause hearing loss. I had Cisplatin and I also suffered permanent hearing loss and I was told Carbo wouldn't have damaged my ears.
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.
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