| | Joined: Jul 2010 Posts: 60 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Jul 2010 Posts: 60 | Ok/have done 19/35 of my radiation treatments and have completed 4/5 of my chemo treatments. Have no taste, little appetite, but fortunately no major pain in throat or mouth. I know the next 3 weeks (and several weeks after treatment) will be the roughest. What should I expect? At what point did you need to use the peg tube as the primary method of supplying nutrition?
Susan/59/nonsmoker /tonsil cancer spread to tongue,stage III diagnosed 6/10, HPV+ T3,N1 Finished 35 radiation and 7 cisplatin 9/7/10.
| | | | | 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 | Susan, you are doing GREAT!!!!! Keep pushing the nutrition and fluids. Go for minimum 2500 calories and 48oz water daily. I was using the peg from about the 2nd week. You may be one of the lucky few who will sail thru this easily. The last couple weeks are the hardest and so is the first 2 after you finish. The fatigue sets in and swallowing becomes very difficult are a couple common problems. Keep up the good work and it will be over very soon.
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 | Susan,
As we each can respond differently I hope you see "nothin but blue sky's" so IF you start experiencing some bad stuff then ask what to do but for now just keep doing what you have been.
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 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Good for you, Susan. Keep up the great work. It's going to get tougher for awhile.... but soon enough things will improve. The fact that you're more than halfway through and you don't have mouth and throat pain is fantastic news.
Courage!
David #2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jul 2010 Posts: 60 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jul 2010 Posts: 60 | Thanks, David. Perhaps it is the clinical trial that they are running at Hopkins.
Susan/59/nonsmoker /tonsil cancer spread to tongue,stage III diagnosed 6/10, HPV+ T3,N1 Finished 35 radiation and 7 cisplatin 9/7/10.
| | | | | Joined: Jul 2010 Posts: 10 Member | | Member
Joined: Jul 2010 Posts: 10 | I did radiation and chemo also but I never had a feeding tube. Scrambled eggs and oatmeal became my friends. When I didn't feel like eating I drank Ensure, Boost, Special K Protein, Carnation Instant Breakfast and my husband made lots of shakes for me to keep my weight up. Sometimes I had to sit at the table for awhile to get enough food down but I did it. I was determined not to have to have the feeding tube. Just remember you WILL make it through and come out on the other side. Hang in there!
SCC on right tongue T2N1M0 Non-smoker, non-drinker age 55 female. Partial glossectomy April 2009,July 2009, Jan. 2011, lymph nodes removed, radiation & chemo 2009
| | | | | Joined: Jan 2010 Posts: 142 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2010 Posts: 142 | Seems like yesterday I was doing my count down of radiation treatments and now it has been over for almost 4 months. I had a very difficult time from the 3rd week spent 21 days in hospital but treatments 19-24 were a breeze. Just take it day by day and it will be over before you know it. Hang in there.
55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer
1/18/10 Clr PET
1/27/10 Surgery found Perineural invasion
3/22/10 Began Rad
05/05/10 34 rads
8/19/10 Clr Pet Scan
12/13/10 Clr Ultra sound/biopsy
5/4/11 MRI Clear
8/2/11 All Clear
5/25/12 All Clear
6/3/2016 All Clear
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