| | Joined: Jul 2009 Posts: 1,409 Likes: 1 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 Likes: 1 | Mickey, you seem to be in good hands and you're getting great advice from some of the real experts on this forum. I'm also available to speak/PM with you anytime about the effects of radiation treatment. I can't address chemo as I managed to avoid that.
Radiation knocked the stuffing out of me personally... but I've read of others for whom it wasn't as tough a ride.
Hang in there buddy!
Oh and to Charm's excellent advice about a thyroid test I'd add to be sure and visit a dentist before you start rads to assess the health of your teeth and gums. You'll likely be prescribed fluoride trays... you'll learn all about that from the tooth man, they're really not too bad at all (assuming your general dental health is good).
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 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Good luck. Everyone responds differently to chemo, and radiation, so its hard to say what you can do. As mentioned, some have few problems, and others have too many. Chemo
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Apr 2012 Posts: 111 "OCF across the pond" Senior Member (100+ posts) | | "OCF across the pond" Senior Member (100+ posts)
Joined: Apr 2012 Posts: 111 | Hi Mickey, I can't really add much over everyone else's posts, but just wanted to say hello. I finished treatment for BOT in January. Mine was a good bit larger than yours, so glad to hear you have caught it early. The treatment is tough so that the cancer is stopped in its tracks and hopefully eradicated.
On the whole I maintained a reasonable amount of energy, but I had real problems with a sore mouth and eating. Definitely follow the advice on nutrition and drinking and continuing to swallow even if eating is difficult. Also ask about exercises to keep your jaw opening wide. I wasn't told about the problem of everything tightening up and as I didn't eat for a couple of months I didn't notice my jaw had tightened up until the first time I tried a banana and I had difficulty opening wide enough!
Do take plenty of time off work if you can. I am back at work now but I was away for 9mths. I am lucky that I was able to do this and I know not everyone can, or needs to be off so long.
As others have said the treatment can be similar but everyone reacts very differently. I have found my taste buds have come back to life well (though wine still taste disgusting!) though I am suffering from the dreaded dry mouth. But that is a small price to pay for having my health and life back again.
Please keep posting questions and let us know how you are doing.
Sally
Dx 10/11 51yrs LBOT Stage 4 2nodes HPV16+. Non-smoker mod alcohol.
10/11 Induction chemox2 (Docetaxel, 5-Flu, Cisplatin) then Cisplatinx2 IMRTx30. Ended 01/13/12.
12/07/11 RIG. RIG removed 05/05/12.
4/12 CT scan clear. Visual scope checks clear as of 10/13. Learning to live with eating challenges.
| | | | | Joined: Aug 2012 Posts: 71 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Aug 2012 Posts: 71 | Thanks for all the advice.... My HPV is Positive! So from what I have read that is a good thing. I have taken my first chemo on 09/04/12 and started IMRT yesterday on 09/05/12 and today. I will have 35 days (7 weeks) of radiation and every Monday will have a chemo TX of taxol and carbolatin. The doctor said the chemo is 1/4 doses so my hair shouldn't fall out and I should get little nausea, but the nurse said that was not really correct. I don't care about my hair, not a Whole lot up there anyways and it should grow back. My wife is taken care of me very well but I am not really seeing any effects from the rad or chem yet. (well a little constipation)... Oh, the doc did say that I had clear margins also... Praise the Lord! Also started the fluoride trays last week, twice a day. I will post more later. Thanks again everyone. Oh. ps. I have asked them to schedule my peg tube within the next 2 weeks and perhaps a port... not sure on the port as I only have 5 chemo's to go?
Last edited by MickeyW; 09-06-2012 06:07 PM.
large lymph node Left Neck around May 22 2012
ENT June 6, did needle Biopsy - Negative
ENT CT scan July 9 - Negative
Remove lymph node July 26, DX - SSC - T1N2aM0
PET Aug 7, BOT
Aug 14, endoscopy, 1cm - clear margin HPV+
TX 33 IMRT - 6 Chemo - Taxol/Carboplatin
TX chemo 09/04/12 RAD 09/05/12
| | | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2012 Posts: 214 Likes: 1 | Best of luck to you. Your path to here and mine are all but identicle. I am jusy 2 weeks behind you. I would like to keep in touch as we go thru this nearly at the same time. See New member Hockeydad.
Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | | 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 | A port will spare your veins. Chemo has a nasty habit of destroying even the most prominent veins. I had a port even though my veins were good. Now many surgeries and a few years later, I am glad I had the port as my veins arent quite so good anymore.
Keep the good nutrition going and you will sail right thru. Every single day take in at least 2500 calories and 48 oz of water. if you get get more in do it. Your body is fighting the cancer and treatments so it is burning up calories at an amazing pace. You could take in 3500 calories every day and still would have trouble keeping your weight steady. Thats how much energy goes into fighting this! Water is especially important to flush out the kidneys. Swallow water every single day to keep your swallowing muscles active. Even if you have the feeding tube, keep swallowing daily.
Best wishes with everything!
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 | I agree with the port idea. I wish I had had one!
Two times a day for the trays is a first. Rest of us were told once a day, usually right before bed. Check that out.
You will loose the hair on the back of your neck due to the radiation's exit path and you may loose your facil hair also due to the rad. I did and the whiskers above my chin line and the hair on the back of my neck came back but not the whiskers below my chin line.
Calories and water, tons of it each and every day. Stay on top of the Big C (constipation). I will never forget the pain I had because of the Big C!
Keep on undating us and before you know it, it will be history.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Looking back on 10 years post treatment what I wish I had done differently was stretch my mouth as wide as possible many times throughout the day. My biggest pain in the post years is not being able to open my mouth far enough to take a bite of apple, or eat most sandwiches or hamburgers. Tough on my dentist too to get into my mouth to check those teeth. Much going on for you just getting through treatment but if you can--open that mouth wide!!! Because when you finally can eat, you'll want too!
Best of luck - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Yawning is a great way to fire the mouth muscles.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Aug 2012 Posts: 71 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Aug 2012 Posts: 71 | Yep HockeyDad I will follow your posts too.
large lymph node Left Neck around May 22 2012
ENT June 6, did needle Biopsy - Negative
ENT CT scan July 9 - Negative
Remove lymph node July 26, DX - SSC - T1N2aM0
PET Aug 7, BOT
Aug 14, endoscopy, 1cm - clear margin HPV+
TX 33 IMRT - 6 Chemo - Taxol/Carboplatin
TX chemo 09/04/12 RAD 09/05/12
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