| | Joined: Jun 2012 Posts: 8 Member | OP  Member
Joined: Jun 2012 Posts: 8 | I just finished my 5th week of proton therapy for oral cancer. Skin is burnt like a bad sun burn. Mouth is sore for 4 to 5 hours after treatment. Get fatuiged easy. But I still can drive myself there, 35 miles each way. I can eat and drink ok, haven't lost any weight. Not to bad after 25 treatments 3 fields a treatment for mouth and lymp glands on left side. | | | | | 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 | Great news.
Are you also getting chemo?
Please tell us more about your staging and Dx? You can use the Signature line for that so you don't have to repaet yourself all the time.
Kind of unusual to use IMPT vs IMRT for oral cancer.
Where are you being treated?
How many IMPT sessions will you get?
Welcome to this site!!
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: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | Yes, welcome. There have been several posters in recent months who have asked about proton therapy, so your experiences and insights will be valuable -- most here who have had radiation have had the standard IMRT.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | | Joined: Jun 2012 Posts: 8 Member | | OP Member
Joined: Jun 2012 Posts: 8 | No not getting chemo. Being treated at Pro Cure in Somerset NJ. 10 more treatments to go, but lymp nodes aren't going to be treated anymore so protons will be smaller dose to local sore in mouth. | | | | | 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 | Jimb, there is an oral cancer walk not that far from Somerset. Its in Andover NJ on Set 22. I will be there along with 9 or 10 other OCF members/survivors. If you are up to it, it would be great if you could make it. OC survivors are free so if you can go please register in advance. NJ Oral Cancer Walk PS... To make a signature, click on the "My Stuff" tab and on the drop down menu click on "Edit Profile". Scroll to the bottom and type your info in the white box and "submit".
Last edited by ChristineB; 08-25-2012 07:36 AM.
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: Jun 2012 Posts: 8 Member | | OP Member
Joined: Jun 2012 Posts: 8 | Thanks Christine, have to see how I 'm feeling in a couple of weeks from now. | | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 |
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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