| Joined: Jun 2014 Posts: 14 Member | OP Member Joined: Jun 2014 Posts: 14 | One down and 34 to go (IMRT) and 2 to go (Cisplatin).
No issues or complaints; just wanted to lodge a post here and refer back to it as the weeks count down. And of course if any issues that I want opinions on arise.
I really feel like between all of you here already and the doctors and nurses telling me what to expect and giving it to me straight that I'm as ready as I can possibly be. It is a great gift that you here have given me. Courage.
Let's do this!
Paul
Dx at age 47 (in 2014-06), non-smoker.
2014-06 biopsy confirms SCC in BoT w/ HPV16+, Stage T4aN2M0 main tumor plus 2 nearby lymph nodes; bilateral; no metastasis?
2014-07-01 single molar (#3) extracted
2014-07-21 IMRT (35x) and Cisplatin (3x) have begun
2014-09-05 IMRT and Cisplatin finished! (only had 2x Cisplatin - weeks 1 and 4)
2014-09 to 2014-12 Recovery. I think I can...
2014-12 follow-up PET/CT scan is negative. All clear!
2016-05 all subsequent PET/CTs negative. | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Good luck Paul. Hoping you have an easy time of it. Keep swallowing. Maintain the calories and if you need pain relief ask for it and take it. We will all be here to help if you need. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Your positive attitude is your best support through the trip. Don't be shy when you get some side effect and want some tips from the trenches. Good luck
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | 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 | At least you have started and now you are walking towards that finish line and we will be with you the entire time.
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 | Paul, you're part of our family and we're all here for you. There will be challenges ahead, but I know you'll meet them with guts and an upbeat attitude. Whatever you face along the way you can be sure one of us has been through something just like it. So don't be afraid to ask any questions here, no matter how trivial they may seem to you.
Hang in there, buddy.
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: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Please dont hesitate to post often and ask questions as you go thru the next few weeks. We will help you as much as possible.
Keep your focus on your intake. That will help you get thru it easier. Every single day hit the minimums of 2500 calories and 48-64 oz of water. If you can do more, thats even better and will only help. Dont worry about gaining weight, most of us lose weight even when taking in 2500+ calories daily. Swallow every single day even if it hurts.
Hang in there, we are in your corner all the way. 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 2014 Posts: 14 Member | OP Member Joined: Jun 2014 Posts: 14 | Thanks everyone!
So I'm starting Day 4 now. On Day 2 I awoke with pretty strong nausea but took the Compazine and lay back down and felt better. Later in the day I got the wildest bout of hiccups 3 different times. They haven't come back and I also got a prescription for Prilosec because I was complaining of a little heartburn.
On Days 2 and 3 I was noticeably tired. I took time out to grab a nap when I could and went to bed early. Hard to gauge how Day 4 will go but I don't think I'm quite as tired out of the gate.
Appetite is good, I'm eating well. No ill effects I think from radiation treatments yet (there have only been 3 of them; fourth this afternoon).
Dx at age 47 (in 2014-06), non-smoker.
2014-06 biopsy confirms SCC in BoT w/ HPV16+, Stage T4aN2M0 main tumor plus 2 nearby lymph nodes; bilateral; no metastasis?
2014-07-01 single molar (#3) extracted
2014-07-21 IMRT (35x) and Cisplatin (3x) have begun
2014-09-05 IMRT and Cisplatin finished! (only had 2x Cisplatin - weeks 1 and 4)
2014-09 to 2014-12 Recovery. I think I can...
2014-12 follow-up PET/CT scan is negative. All clear!
2016-05 all subsequent PET/CTs negative. | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | The hiccups can be from the decadron (corticosteroids), infusions given with chemo. There are meds for that, if it becomes a problem.
Keep up the good work!
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: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Kris had wicked, relentless hiccups after each chemo. They went on day and night for 2 weeks. No meds stopped them. Not pleasant. Hope day 4 went well. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Jun 2014 Posts: 14 Member | OP Member Joined: Jun 2014 Posts: 14 | Had been a little worried about how listless I was becoming already but on Saturday I kind of rebounded and I had a very long and fulfilling day on Sunday. Got a good night sleep and feel pretty normal this morning on Monday. Going to be able to get some work in. So I'm hopeful of another couple of good weeks without being/feeling so tired and listless before I start chemo again. Feels like I may have turned a small corner.
Taste is becoming noticeable but not really a problem. Just food and drink beginning to feel more 'meh'. But I'm not having any troubles swallowing and taking in nourishment and calories. I go back for a check-up with the chemo doc this afternoon before rads and I'm sure we'll have things to talk about.
Just want to acknowledge the great and unfailing support of you folks here. My friends and family (through a caring bridge site mostly) are very complimentary about my spirits and my knowledge in the face of my situation. I know that I owe a huge part of that to the folks here now and before me.
Paul
Dx at age 47 (in 2014-06), non-smoker.
2014-06 biopsy confirms SCC in BoT w/ HPV16+, Stage T4aN2M0 main tumor plus 2 nearby lymph nodes; bilateral; no metastasis?
2014-07-01 single molar (#3) extracted
2014-07-21 IMRT (35x) and Cisplatin (3x) have begun
2014-09-05 IMRT and Cisplatin finished! (only had 2x Cisplatin - weeks 1 and 4)
2014-09 to 2014-12 Recovery. I think I can...
2014-12 follow-up PET/CT scan is negative. All clear!
2016-05 all subsequent PET/CTs negative. | | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | Paul the only thing I'd add to what the others have said is to stay in close touch with your doctors and nurses. Some weird things are going to happen to your body that are going to redefine words for you. Be aware of all new symptoms and don't try to tough any out. Nausea, constipation, hiccups, tinnitus. Keep the bowels and kidneys working and keep those calories up.
Every journey is slightly different and everyone reacts differently. Hope yours is a smooth ride. Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | Joined: Jun 2014 Posts: 14 Member | OP Member Joined: Jun 2014 Posts: 14 | Over the weekend I had a big switch in terms of symptoms.
No longer producing no saliva I have go into saliva over-drive; the thick stringy stuff.
Throat now very sore. Painful to swallow. Contricted.
Constipated (though did have a bm just now this morning); may have been causing the extra-queasy feeling of late?
As I write this Tuesday morning I'm generally feeling a bit better. We upped my Prilosec and maybe it made my throat feel a little better. Like I said I had a bm this morning following some 'emergency' magnesium citrate last night. And when I took some vicodin last night it did help the throat pain.
This morning also my saliva problem seems a little better. Maybe also the Prilosec?
Weirdly comforting that I'm moving on to the 'next phase' as I can start to count down the days this (throat, saliva) will be over. I know it will be a while but it's part of what everybody has been warning about so...
Spirits high. #Courage
Paul
Dx at age 47 (in 2014-06), non-smoker.
2014-06 biopsy confirms SCC in BoT w/ HPV16+, Stage T4aN2M0 main tumor plus 2 nearby lymph nodes; bilateral; no metastasis?
2014-07-01 single molar (#3) extracted
2014-07-21 IMRT (35x) and Cisplatin (3x) have begun
2014-09-05 IMRT and Cisplatin finished! (only had 2x Cisplatin - weeks 1 and 4)
2014-09 to 2014-12 Recovery. I think I can...
2014-12 follow-up PET/CT scan is negative. All clear!
2016-05 all subsequent PET/CTs negative. | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | Hi Paul - I had to add a stool softener capsule to my daily intake; that helped keep things moving. It was when I forgot it I would realize a day or two later my mistake.
I lost all taste for food during treatment except the days when all food tasted really bad. When that happens you can lose the desire to eat anything and that's when mal-nutrition begins. I found I could tolerate Ensure as it didn't make me gag, plus it was pretty nutritious. The RO said I needed 7 bottles per day, most days I was able to get 6 of them down. For me vanilla and strawberry were much better than chocolate. Even on that schedule I still lost 32 pounds during the 7 weeks of treatment.
For me oral lidocaine was the life saver. Last 3 or 4 weeks of treatment I had to use it before (and sometimes during) each meal so I could swallow. My problem wasn't a tender throat, it was a tender mouth brought on by mucositis.
Chewing Trident gum helped a lot with the low saliva/dry mouth problem. There's something about the xylitol sweetener in it that helps. I tried the Biotene (original formula) products, but for me Trident worked better.
Everyone is different, what works for one may not work for the next. Your challenge is to find out what works for you.
Keep fighting, you will get there. Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Hi Paul. I finished 11 weeks ago and can identify with the constipation problems. Sometimes that was the cause of nausea I think. One week the RO told me she'd seen two patients that day who had been hospitalised (I think she meant that) because of bad constipation so I made sure I took the tablets provided:)
I thought the 6 weeks of treatment would never go by but it went by in a flash.
Best wishes Maureen
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | Paul, log your poos and your meds. If you go a few days without a poo it can bring a whole world of new problems you don't want. Coloxyl stool softener is good, but it wasn't enough for me on its own. After 7 pooless days I was hospitalised for the worst 5 days of my life. Movicol is vile stuff, but it works and pushes everything through.
Its wise to have a "go bag" with just a few basics in case you get hospitalised for anything. Keep the calories and hydration going and keep on top of your pain, don't try to "tough it out". Chin up you are doing well. Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | Joined: Jul 2014 Posts: 25 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jul 2014 Posts: 25 | Paul, my husband has pretty much the same cancer and location as yours. He will be finishing is last 2 rads of 35 on Tues. I just want to wish you well and tell you to just concentrate on each day. Don't look ahead, just stay in the moment. The days do start to pass before you know it. I honestly can't believe we are nearly done with treatment. My husband only got in 2 cisplatins, couldn't complete the third because his labs weren't good enough. He got nasty hiccups with both chemos. His lasted 2 days and then just stopped. He felt crummy pretty much the whole week of chemo but always started to rebound a bit by the weekend. Make sure you stay on schedule with the Zofran or whatever anti-nauseas you may be on. Even if you don't feel nauseous, take them on schedule. They work much better that way. We learned that the hard way.
I'm glad you are underway with your treatment and keep up that sunny disposition. It truly goes a long way.
Carol
Carol Husband diagnosed SCC BoT 4a-June 4, 2014 Mets bilateral lymph nodes HPV positive Tx started June 23, 2014 Blood clot in cephalic vein of right arm after first chemo 2x Cisplatin (hopefully getting in 3rd) 35 IMRT (hopefully complete on Aug. 12) third Cisplatin cancelled Last day of treatment Aug. 12, 2014 PET scan Nov. 10-NED (some PT inflammation)
| | | | Joined: Dec 2013 Posts: 78 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Dec 2013 Posts: 78 | I believe you must be close to wrap up your set treatments by this week. I know (definitely) you must have lost your natural spirand mood to interact with sort of bunch of psychological changes and physical alterations due to treatments. BUT, you definitely will be out of it once treatments complete. It's a cycle. Each ride has a specific begin and a stop. Once treatments stops, normality will start to appear...
Please update, once you complete your treatments. Special thanks to OCF and all respected members here for their support
Ankur, 37, T1N2M0 12/13: Biopsy and results 01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction Right neck dissection. 3/42 nodes positive and removed Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14) 03/14: 30 IMRT Appointments Started 3/17 (No CT) 04/14: Radiation treatments completed 07/14: PET - All Clear | | | | Joined: Jun 2014 Posts: 14 Member | OP Member Joined: Jun 2014 Posts: 14 | Completed treatment last week. WHEW!
Feeling pretty beat up but I have the wind at my back now.
Dx at age 47 (in 2014-06), non-smoker.
2014-06 biopsy confirms SCC in BoT w/ HPV16+, Stage T4aN2M0 main tumor plus 2 nearby lymph nodes; bilateral; no metastasis?
2014-07-01 single molar (#3) extracted
2014-07-21 IMRT (35x) and Cisplatin (3x) have begun
2014-09-05 IMRT and Cisplatin finished! (only had 2x Cisplatin - weeks 1 and 4)
2014-09 to 2014-12 Recovery. I think I can...
2014-12 follow-up PET/CT scan is negative. All clear!
2016-05 all subsequent PET/CTs negative. | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Fantastic! Some feel more beat up the coming few weeks then turn up, others are already on the upswing by now. Either way better days ahead. Great news.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Feb 2014 Posts: 17 Member | Member Joined: Feb 2014 Posts: 17 | Hi Paul, I see you have just finished treatment, that is great. I'm just getting ready to start treatment, and very nervous. Also wondering if you had extra nodal extension on your Lymphnode biopsies. My RO is telling me I only need Radiation not Chemo because I did not have extra nodal extension... but I'm worried because the Chemo Dr says I should have it along with the radiation. the Tumor board was split. I'm not sure what to do, so I'd like to know what you had, since your DRs had you do both. Please let me know.
Thanks, Angela
SCC 12/13 - T1N0 1/28/13 - removal of tumor Rt. Tongue clear margins 5/14 lump under chin, 8/14 FNA showed C and CAT 8/25 neck dissection, 14nodes removed 9 clear 5 with C Extra Nodal Extension not present 9/9/14 tumor board meeting to determine RAD and poss chemo treatment
| | | | Joined: May 2013 Posts: 185 Likes: 3 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2013 Posts: 185 Likes: 3 | Paul congratulations on finishing treatment. Dig deep over the next few weeks while maintaining discipline in nutrition. Try moving around and doing simple exercises to help with recovery. Your body has been through much and in some ways you have a ways to go. Keep this group posted and ask questions. Get your calories and keep the water intake at 80+ ounces per day.
Age 55 HPV 16+ SCC, BOT 050613 Stage IV great team at OSU Tx 6 weeks of rad started June 3 8 weeks of chemo started May 28 RTOG Phase III trial Cetuximab group. Treatment completed 7/16/2013 PET Scan completed 10/08/13 Results discussed 10/11/13 NED - Free but am I Next part of the journey? 1year PET 10/24/14 NED Good reports now 10 years out. | | |
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