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I haven't posted in a while. This whole treatment regimine is awful at best. My husband continues to have a very good attitude and is 100% positive that he will beat this thing. He finished up his chemo, Taxol, Cisplatin and IFEX - 3 days worth every three weeks for a total of 18 hours of "drip" each treatment week. He tolerated pretty well, except for the last treatement and we were very glad that the docs said he did not need to do round 4.

Docs ordered Erbitux and he had his first drip - a double dose on April 2. We ended up in the emergency room at midnight that night - if a side effect was listed - he had them all. The worst is the nagging headache that still persists. Suffuce to say - no more Erbitux but the acne side effect is also lingering and quite frustrating for him.

He is being blasted on both sides of his neck and base of tongue. He had a sore throat by day three last week and they made a couple of adjustments and his throat isn't quite as sore - although we know its coming soon. The biggest issue is the development of tongue sores already. He says it feels like canker sores - he started a honey regimine as directed by his doc (although he's been doing it since starting chemo). I found a Canadian study on the benefits of Manuka honey a while back. I read something just recently, and found a couple of comments here about using hydrogen peroxide - swishing a tablesppon around for 5-10 minutes once a day...has anyone tried this? - or have any other suggestions. Thanks for any advice or insight.


Lisaj, caregiver to Ken age 45 at DX, non smoker, social drinker, athlete
Stage IV SCC BOT, bilateral lymph involvement
DX 01/08/2010
Taxol, Cisplatin, IFEX
Treatment completed 6/2010 - all clear
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Lisa, it's good to hear from you, I've thought about you guys often. Never heard of the hydrogen peroxide but I hope he finds some relief soon! My prayers are with you guys!


Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
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I would think that would be painful.


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.
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Manuka honey is supposed to be good and helps reduce the side effects of radiaiton. I don't remember when you are supposed to take it.

I'd stay away from the hydrogen peroxide until you check with the doctor. For some reason, I think my dentist said to never use it in the mouth but I don't remember why. I must be brain dead today.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Sounds painful to me too. Just had a young Dr friend call to check on me. My sons best friend. I have heard peroxide is to stayed away from.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Not sure there's much you can do for this except regular pain meds offered by oncologist - magic mouth wash, fentanal ( sp? ) patch, hydrocodine, etc. Unfortunately, this is part of the deal for majority of folks as the treatments start adding up and having their side effects. Hang in there.


Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
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I rinsed my mouth several times per day with....
16oz water
1 tsp baking soda
1tsp salt

The salt started to burn my mouth so I reduced it and eventually only used water and baking soda. It did help with mucous and soothing the mouth sores. Of course, I also had pain meds and magic mouthwash. The MM helped alot to numb the pain in my mouth.

There are several varieties of magic mouthwash. Mine was lidocaine, maylox and benedryl.

A few people recently have mentioned Manuka honey. Im not familiar with it, but if the doc recommended it, then hope it helps. Best of luck with everything.


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
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Doc wrote him an RX today - poor guy - red hair (or used to have red hair) very fair skin - his throat is already a mess. Doc said that his throat and tongue are in worse shape than usual given only 9 rads - gonna be a long road.


Lisaj, caregiver to Ken age 45 at DX, non smoker, social drinker, athlete
Stage IV SCC BOT, bilateral lymph involvement
DX 01/08/2010
Taxol, Cisplatin, IFEX
Treatment completed 6/2010 - all clear
Joined: May 2002
Posts: 2,152
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Ask the doc for a prescription for Biafine. It is a cream you put on after you get home from radiation treatments as long as you have no open wounds. It is also supposed to help prevent burning besides healing burns. Would have been better if he had started using it before he started treatments, but better late than never.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
Joined: Feb 2010
Posts: 235
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Hi Lisa, hope you are holding up ok.
Dave is on his third week of radiation and going for his second chemo on Monday so I think we are close to where you and Ken are.
The team at Sloan recommends rinsing your mouth every 4-6 hours with some variation of the baking soda solution.
They also recommend a humidifer especially at night

For skin care, they suggest that he use Aquaphor or Eucerin twice a day. Right after the treatment and at night. That stuff is very thick.

You could also ask the nurse about sprays like Cepacol. It provides temporary relief.



CG to Spouse BOT, Chemo and radiation started on March 29,2010
Ended on May 14,2010. LET THE HEALING BEGIN!!!
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