| Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | End of week 1 - I finished radiation 7 days ago. Here is an update of what's going on. One reason for doing these weekly posts is to help others gauge where they are in post treatment.
Mucositis - have had it for two weeks, it isn't really getting any better. I have to use lidocaine about every hour and before all meals. Tonight I had to use it again during the meal, as the chicken and rice soup just seemed to wash it away. Someone mentioned something that made me think my dental hygiene needs to be raised up a notch, so I doubled my efforts about teeth brushing after every meal & snack and just in case the toothbrush is a source of reinfection, I now soak it in a bleach water solution between uses. I also use the chlorhexidine gluconate more often.
Neck sunburn - it's getting better every day, though I still use the Aquaphor frequently. I will continue to use it until skin color returns to normal. I credit Aquaphor with helping me avoid any serious burns or skin sores during radiation.
Rope mucous - I have it pretty good every morning when I get up. Gargling with warm water (no salt, it burns the tongue) loosens it up enough that I can hack and spit a dozen or so times and clear my throat enough to make it through the day. Fortunately I have no throat burn, so hacking and spitting is not painful and I have no problem swallowing.
Diet - I am still pretty much on Ensure only. It's creamy and smooth and it goes down easily. That soup tonight wasn't really worth the effort, and it probably didn't have the nutrition that Ensure does anyway. But, sometimes you just want something different.
Weight - lost a couple of pounds during the week, so I bought a digital scale to monitor my daily weight. Energy level is still good enough to continue dancing regularly, though I do need one good nap every afternoon. Am sleeping well at night.
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: 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 | All sounds good, Tony. Be careful with too much chlorahexdine gluconate, also called Peridex. It can cause mouth issues, black tongue and teeth staining, ulcers, others, but maybe not. http://www.rxlist.com/peridex-side-effects-drug-center.htm
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: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Sep 2012 Posts: 381 | Tony, you must be so happy to be done, and it sounds like you are doing fantastic! The worst is almost behind you!
Tina Diag: Aug. 13/12 T3N0M0 50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V Surgery October 11/12 Chemo/rad on hold due to clear margins and nodes Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely. Dec 16/13 - anomaly confirmed artery, all clear nickname: "get 'r done" Plans: kick cancer's butt
| | | | Joined: Nov 2013 Posts: 34 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Nov 2013 Posts: 34 | Hey Tony, glad you got through the rads. you have reached the peak and its all downhill from here. You should start seeing improvement almost everyday till new normal. I am sure its different for eveybody, but adaptable and doable. good luck.
discovered a golf ball in my neck St.Paddy's day 2010. Dx stage 4a left tonsil ca may 2010 at 50 non smoker, moderate beer drinker HPV-16 pos. tosillectomy 9 weeks Cisplatin 35 rads nov.2010 PET NED 2011 2x PET NED 2012 2x PET Ned 3/13 Pet NED SEptember 2013 Pet uh-OH.questionable and anxious follow up pet, yup, its back. mets to sub clavivular and mediasteinum nodes biopsy positive scc. trying to figure out next step my imaginary friends think I am crazy.
| | | | Joined: Jan 2013 Posts: 1,292 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,292 Likes: 1 | Tony,
You are doing well to try a variety of tactics to overcome the side effects. Here are a few new ideas.
Ensure is nearly 100% sugar and since that is your primary oral intake, your oral cavity is a breeding ground for bacteria and such. So you use Peridex to overcome that issue. Then that causes staining and other issues. Ounce of ounce whey protein powder offers the same caloric value but far better nutrition to aid your body in cellular growth, giving your body fuel to fight and rebuild damage done by things like mucositis as well as all the other muscles lost due to treatments.
Try a few bottles of Essentia or other high pH water. The high alkalinity offsets the acidic condition in your mouth, the kind of condition bacteria love to grow. It is also highly buffered so it actually feels much smoother and easier to drink.
Try using a diluted solution of hydrogen peroxide and water to swish now and then rather than the Peridex. You can also put it on Q-tip and directly apply to sores. i used raw salt too. Hurt like hell temporarily but was quite effective. If anything you would want to use less Peridex rather than more.
Liquid lidocaine is to be used no more than three times a day. My oncology staff were quite vociferous about overdoing this. It has limited effectiveness, maybe 10 minutes or less. I used it just before eating to help get food down. Magic mouthwash often includes lidocaine as well.
Not sure if you subscribed to my blog but I recorded things I tried and reported their effectiveness every day for the duration. Feel free to join if you have not already. link in the sig.
Don
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: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | Hi Don: Thanks for the suggestions; I will look further into them.
Yes I subscribed to your blog, but have been remisce in staying up with reading it, will redouble that effort also.
As for the lidocaine use, since all my symptoms are in the mouth I use it only as a swish type treatment, then spit it out. And to make it a little easier to swish it's diluted about 2 parts lidocaine to 1 part water. I don't think I've ever swallowed it, though it says it can be.
take care 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: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | Two Weeks Post Treatment - Here's an update so other's can track my progress and newbies can get an idea of what to expect in post treatment.
It's not a lot of change since a week ago, but some of it is noticeable. The suntan on side of neck is improving quickly. The dark splotches continue to decrease in size, half or more are gone now, that skin has already returned to normal skin color. I have reasonably dark skin anyway, it looks like I keep a tan even through the winter months. So that means my "suntan" was really dark.
I still use Aquaphor, but now it's usually just once a day and I use less of it than I did during treatment. Yesterday is the first day I wore a shirt with a collar since radiation began.
Rope mucous is getting better. Throat doesn't feel completely glued every morning. I don't usually need to gargle warm water to soften it so I can clear it. And the number of hacks and spits to clear it have also decreased. It has gotten noticeably better.
The mucositis seems to be improving. I still have it, but it doesn't hurt as much as a week ago, and I don't have to use the lidocaine swish as often as before. For awhile there it hurt so bad I suspended use of the floride trays, but was able to start up again this week.
None of my taste has returned yet, BUT I'm beginning to have a hot meal pretty much once a day now. I still try to do 6 cans of Ensure per day.
My dry mouth is on again off again. Sometimes mouth feels normal, like I have normal saliva production. Other times it feels as dry as a desert. Chewing Trident gum helps, but that stimulates saliva which washes away the Lidocaine.
I did go dancing last night and didn't get tired at all, unlike the fatigue that I had at New Years Eve party about two weeks ago.
I did lose a few pounds after treatment ended, but have lost no weight over last 4 days. I love the skinny belly I have now and strongly desire to keep it. I haven't been this skinny in 25 years. I'll probably catch some grief from forum members about this.
Life is good ... and getting better every day.
Tony
Last edited by n74tg; 01-11-2014 06:23 AM.
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: Jan 2013 Posts: 57 "OCF Canuck" Supporting Member (50+ posts) | "OCF Canuck" Supporting Member (50+ posts) Joined: Jan 2013 Posts: 57 | Glad your doing well tony Sounds like your recovery and treatment is similar to mine I started getting my taste back in third week and actually have good saliva now at ten or so months post treatment. Hope you get your taste back soon that was the worst part of treatment I found.....that and the darn mask lol Ken
46 yr old non smoker moderate drinker Lump on neck Dx branchial cyst by fna mar 2012 Op to remove dec2012 biopsy back hpv 16 scc Starting rads jan 31 no chemo docs say? Finished mar13 Pet scan june 30 NED :))) Back to work and enjoying life Checkup aug 12 all good
| | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Sep 2012 Posts: 381 | Tony, I'm with you on the skinny. I am 129 pounds now, which I have never been as an adult. All told I lost 45 pounds. I have been holding steady at this weight with a fluctuation between 133 and 129 for the past 6 months, so this is probably where I'll stay. I consider this my silver lining.... Hello size 6!
Tina Diag: Aug. 13/12 T3N0M0 50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V Surgery October 11/12 Chemo/rad on hold due to clear margins and nodes Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely. Dec 16/13 - anomaly confirmed artery, all clear nickname: "get 'r done" Plans: kick cancer's butt
| | | | 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 | Just curious. Did you have both sides radiated, bilaterally or one side, ipsilaterally? Either way, sounds like you are doing well in recovery.
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
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