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"Above & Beyond" Member (500+ posts)
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Good morning Ambra - hey you have several positive things to be looking at. First off you're 1/3 through your rads, I am only 1/7 (wish I was where you are). Second, with my sore throat, is it an infection or not an infection my mouth has hurt since long before rads every began. I feel like I have week 3 symptoms from the beginning and I know they will get worse. Third, you apparently have to do only 30 treatments, mine is 35. I think I'd trade places with you in a heartbeat.

I discussed manuka honey with my doctor also. He had never heard of it and he dismissed the idea also. He says go get a gallon jug of drinkable aloe vera liquid. It has had numerous medical trials and it's benefits are well documented as an anti inflammatory.

Sorry you're feeling rotten Ambra, but you do have some positives in your corner. It's not all bad.

take care, take another nap, that almost always makes things better.

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: May 2013
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Senior Member (100+ posts)
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Ambra stay focused on the light at the end of the tunnel. You will get there. Keep the daily disciplines of hydration and nutrition ramped up as they will help you on the journey. I always thought the symptoms came earlier than expected especially when my taste buds went on day 5. Either way they come in all of us. Stay strong and be encouraged by what you read here. We have been there.


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.
Joined: Sep 2013
Posts: 94
Ambra Offline OP
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Sep 2013
Posts: 94
Thank you for all the support guys! Finished treatment #12. I am going to start using a skin cream called RadiaPlexRx that a friend recommended- her Mom used it when getting rads for breast cancer and she apparently had nos kin issues at all. My RO gave green light though he was skeptical about it making a difference.

PaulB, you are spot on about Gabapentin and dosage: I am indeed taking 300mg pills, 3x3 a day, for a daily total of 2700mg. It is the morning and afternoon ones that make me fill quite dizzy. Mt RO said I could decrease the noon dose to 2 or even 1 pill if absolutely necessary.


36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



Joined: Sep 2013
Posts: 94
Ambra Offline OP
Supporting Member (50+ posts)
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Joined: Sep 2013
Posts: 94
Hey guys, after tonight's treatment I will be half way through rads! But that was the easy half, and the bad one is still in front of me.

Unfortunately, the "fun' has started. I woke up on Wednesday with a fairly sore, painful and dry throat. It bothered me when I swallowed. Then yesterday, the dryness was gone, because the darn mucositis has kicked in as well! I saw my RO last night and after the scope examination, he confirmed both. Apparently there is an ulcer in my throat on the area they give highest dose (2.1 Gy), which was BOT. According to the RO, this is a good thing, as it means the rads are working. So he prescribed me more meds. I am already taking a huge dose of Gabapentin, and he added Oxycodone and Robinul. I am supposed to take Oxycodone 45 min before eating to make swallowing more comfortable, and Robinul is for mucositis. Both of these drugs, like the old one, can also make you dizzy and drowsy. Gabapentin was already doing a good job of that on me. I have a project deadline at work on Wednesday, and after that I plan to stop working, as I can not do much or anything at all with all the dizziness and tiredness.

Also, my hair started falling out at the nape of the neck and my skin is getting redder. Gums around the molar that is directly in the rad field (and some other random ones, which I can not explain)are swollen and painful when I brush my teeth. Is there something that can soothe the gums other than manuka honey which my RO did not allow me to take?

I am feeling pretty depressed about all these symptoms. I know that they are normal at this point, I am more worried about how much worse are they going to get.

I have also hit the max on my insurance's catastrophic protection, so from now on till the New Year's all my medical expenses are covered 100%. If there is anything you would recommend to have done, now would be a good time.

Thanks for reading!


36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Posts: 10,507
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Ask for a prescription for Magic Mouthwash. Use it as necessary to help with your sore mouth and before eating. Rinse your mouth with 16oz warm water, 2 tsp baking soda, and 2 tsp salt at least 4 times per day. If the salt burns your mouth, cut it back or omit it. Try to keep some salt in the mixture as it will help with healing.

Hang in there!!!


Christine
SCC 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 smile
Joined: Jul 2012
Posts: 3,267
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
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Sorry got your troubles Ambra. Rinsing with diluted Glutamine powder may help, which repairs mucosal tissue. It's also good for the digestive tract if swallowed, and for neuropathy. Rinsing with aloe Vera juice has healing properties, and can be swallowed with the same healing effects, but can be a little laxative, which may be good too. Coconut water has healing properties, is a dialectic, coconut oil too, but with oil more caution needs to be taken, so I heard, but check with that. Using soft or baby toothbrushes may be easier on the teeth, gums, and there are sponge type sticks too that can be used.

Good luck.


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: Aug 2011
Posts: 269
ngk Offline
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Posts: 269
Hi Ambra,
The glutamine powder really helped me. I will pm you and if want give me your address and I will send you a box and will also send you some aloe vera gel to rinse your mouth out. xo


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
Joined: Mar 2013
Posts: 421
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Platinum Member (300+ posts)
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Posts: 421
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Hi Ambra,

Congrats on reaching the halfway mark! As suggested Magic Mouthwash is a wonder drug. At JH they call it Larry's Solution. I used it quite a bit the last part of rads and the first month post. It really helped with the mouth pain and gave me a window to eat (while I was still able).

Positive thoughts and prayers

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
Joined: Oct 2013
Posts: 559
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"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Oct 2013
Posts: 559
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Hi Ambra:
Well you're halfway there, congrats. On Monday I will pass 25% completion. Based on your description I don't envy you, though I know I will be there soon enough on my own.

I take the aloe vera drinkable liquid, but not often enough. I'll get more diligent as time progresses. It doesn't taste bad (not good, but not bad either).

I wish there was something positive I could say that would make everything better, but I know there isn't. So, I'll just say I wish for you a good nights sleep and a weekend of minimal discomfort.

Keep fighting Ambra, you're on the downhill side of treatment now. Soon, it will start to get better.

Take care girl, I'm going to try to dance Sunday evening, may be my last dancing for awhile. All the waltzes will be for you.

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: Sep 2013
Posts: 94
Ambra Offline OP
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Sep 2013
Posts: 94
Thank you very much for the all the advice! I will ask my RO for the magic mouthwash, and have aloe vera and glutamine powder on their way to me. I already doing the salt/baking soda rinse. And I have coconut water too.

I have noticed in the last two evenings that the taste is getting messed up/going away too. Is it a bit early in the treatment for that to happen or just about the expected time?


36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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