| | Joined: Jul 2010 Posts: 27 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Jul 2010 Posts: 27 | I start my 35 treatments Wednesday. I have chemo (Taxol and carboplatin) before my first radiation session. Radiation every weekday till Sept. 8 (skipping Labor Day) and chemo every Monday till the end of August.
Final tips and advice before it starts?
How active have folks been able to stay early on? I ran a marathon 7 weeks ago and was back up to 15 miles for the week last week after (mostly) recovering from tonsillectomy that found primary site, along with other head poking from the inside during that surgery. The chemo nurses in particular emphasize staying as active as I can.
Any experience there? What to eat?
Randy, Stage 3 tonsil SCC, node involvement, HPV-positive. 7 sessions of Taxol-Carboplatin, 35 rads finished 9/8/10. Post-TX PET and CT 12/1 showed "no metabolic evidence of residual or recurrent disease." Yay!
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Randy,
Eat everything! No seriously, by the time your treatment is finished you probably won't be able to taste much of anything, so go enjoy the foods you love now. And do try to eat nutritiously, a balanced diet can only help in your recovery.
As far as activity, I was able to keep walking throughout my treatment and I was in pretty lousy shape going in. Studies have shown that gentle exercise, like walking, helps combat the fatigue that so often accompanies radiation treatment.
- Margaret
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: May 2010 Posts: 135 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2010 Posts: 135 | Hi Randy. Just wishing you the best with the treatment. Have to agree with Margaret to eat everything that you love and then some. Will keep you in thoughts and prayers. And keep us posted on your progress.
Dodie
Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
| | | | | 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 | Randy, eat like you are starving! Dont worry about gaining weight or if something is bad for you. Right now is the time to make sure you have no regrets of cravings while your taste is compromised. Gaining a few pounds right now isnt a bad idea for someone who is probably in tip top shape currently. During treatment, you probably will drop some weight so a few extra pounds will be a good thing to have going into this.
Best of luck this week. Keep a positive attitude and yes, stay active as much as you can.
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: May 2007 Posts: 132 "OCF Down Under" Senior Member (100+ posts) | | "OCF Down Under" Senior Member (100+ posts)
Joined: May 2007 Posts: 132 | Randy,
I have to reinforce what the others have told you about eating and everything that you want to, and then some! Three weeks into your treatment eating will be become a real chore (if you're like most of us) and by the end of treatment you may have a naso-gastric tube or a PEG and be struggling to take anything by mouth. Most of us lose weight so if you put some on prior to treatment that's not a bad thing.
Now that I'm unable to eat solid foods I still remind my daughter that she stopped me having a burger in the week before I started my last treatment. (You shouldn't develop swallowing issues - I have them only because I have had radiotherapy twice)
I agree that light exercise is a good thing throughout treatment but do listen to your body! If you are tired sleep. Don't try and overdo it!
Good luck and keep us updated with your journey.
Sue
55 y/o
SCC LL Tongue 3/27/07
Part. mandibulectomy 9/2/07
Left ND 5/12/08
RT/Chemo
Rec LL Tongue 07/09
Part gloss 8/5 & 8/25
Surg 10/28/09 re mets to R neck & L jaw
RT & Chemo finished 12/22/09
PEG fitted 05/06/10
L buccal SCC 10/10
freeflap (forearm)surgery 2/28/11 L buccal and gingiva
| | | | | Joined: Jul 2010 Posts: 60 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jul 2010 Posts: 60 | Randy--it looks like we are on very parallel roads. I am also HPV and have tonsil cancer. I start my chemo (once a week on Tues) tomorrow, and will have radiation till after labor day as well. Hope we both do as well as we can with this treatment!
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: 27 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jul 2010 Posts: 27 | Best of luck, Susan. Let's stay in touch during our treatment.
Thanks, all, for the suggestions. I have been eating. My wife is making homemade ice cream like crazy! I was slowed by the tonsillectomy/biopsies three weeks ago, but that surgery found my primary site, so it was just fine.
Randy, Stage 3 tonsil SCC, node involvement, HPV-positive. 7 sessions of Taxol-Carboplatin, 35 rads finished 9/8/10. Post-TX PET and CT 12/1 showed "no metabolic evidence of residual or recurrent disease." Yay!
| | | | | 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 | Randy,
If you find you are able to do ANY type of exercising then do it in moderation. Your body will be under attack from 3 sources; the cancer, the radiation and the chemo so your body needs plenty of energy to fight on these physical fronts. Listen to your body. This will only be a small bump in your exercise road so IMO now is the time to ONLY concentrate on your Tx. Everything else should take a distant second. Towards the end of my Tx taking a shower was like running a marathon to me.
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: 148 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 148 Likes: 1 | Hi Randy, I wish you a lot of luck on Wed & for the next few months. I think the mind has so much to do with how we all respond to the whole experience.
Stay as positive as you enter this "war" because You will overcome & triumph !!!! " Cancer...be gone!"
My thoughts & prayers will be with you & Susan.
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 ***
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Joined: Jul 2010 Posts: 10 | I would agree with everything that has already been posted. I would add that if your doctors or speech therapist have given you swallowing exercises - do them and start now. It will keep your muscles active and built up during treatment. Also facial, jaw, mouth exercises help with stiffness during treatment. Eat as much as you can and I drank Ensure, Boost, Special K protein, etc. throughout the day. I did not have to have a feeding tube during my treatment because my weight only fluctuated a few pounds. I was determined not to have a feeding tube so I forced myself to eat as best I could. My husband spent a fortune bringing home food to try to see if it appealed to me and/or I could eat it! I lost more weight during the two weeks post treatment. The most weight I lost was 9 pounds.My treatment was similar to yours - daily radiation x 30 and Chemo once a week. Good luck and you will make it through and come out on the other side.
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
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