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Joined: May 2007
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I also recommend viscous lidocaine. It only works a short time, but it worked wonders when taken before eating or drinking after week 4 or so. Some use "magic mouthwash" which is generally locally made. Whatever mine was it burned so I did not use it. Instead I used salt water/baking soda which was tolerable when even water started to burn. (there should be recipes around here)
Best

M





Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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I also used Biafine on my skin and highly recommend it. It is prescription so ask about it. As to vitamins and supplements, I think they generally recommend you stop taking all those things. Check with your RO on that.

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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I was told by all of my Drs to keep taking centrum daily.We can't eat a lot of foods that contain the needed vitamins and need the supplements contained in these.


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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I'm in Radiation therapy right now I started April 28 an the firs side effects really started to show up the week of May 10th. By the end of the week May 13 th I had last my voice I am producing Larg amounts of Phlem. I go through almost an entire box of tissues or a roll of paper towels. I'm finding it difficult to sleep. I'm good for the first couple of hours, then after that it's every hour I'm awake.

The week ending the 21st I needed to get a patch for teh pain. My throat is very raw and sore.


Tom Barry
Male 43 Years old Base of Tongue Cancer Stage 4
Diagnosed 01/20/2010
Also have Adult onset Stills disease
08/09/10 Clear PT Scan
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Tom,

Hang in there.

Everything you are going thru is 1000% normal. Swishing seltzer water helps breakup that crap. I walked around with a small Styrofoam cup in my pocket and spit in it all day. GROSS GROSS GROSS but better than anything else I tried. Unfortunately things may get worse from here until about your 2nd or 3rd week post Tx but I predict that by July 4th you will not only be celebrating the 4th but you will start feeling a lot better.


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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Beth
I wish I had found OCF back when I started my radiation TX. Instead there was just our waiting room cohort of patients watching each other get worse every week. Take a look at these posts and see that all of us made it through radiation.
It seems like forever when you are doing it, but within a year you will be the one posting to a newcomer about how you survived the Radiation.
In the meantime, as a diversion, you could Think about what you want to do with your mask, I posted a link a while ago about an art exhibit made entirely out of recycled radiation masks. Others mount it on their wall as a "trophy" or "award". Others crush it, ride it over, burn it, shoot it, bury it or just leave it behind at the TX center.
Good luck
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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Hi Beth,

I had trouble with the mask my first time through radiation. I had a panick attack and started to cry when they clamped me down for the first time. So they pulled the mask off anf cut the area over my eyes out. That felt so much better! I could open my eyes and see things normally instead of through plastic mesh. Ask if they can do that for you.

As far as treating your skin from the radiation, I tried Biafine but it felt like it was burning my skin. What worked the best for me was Palmer's Lotion with Cocoa Butter and Vitamin E. That was recommended by my plastic surgeon after surgery to lighten scarring. I continued to use it after each radiation treatment because it moisturized my skin so well and gave me such relief. My radiation oncologist says that also helped prevent scarring from the radiation. The area of my neck that was radiated went back to my normal skin color after treatment ended and I never had that leather look. I swear by that stuff and will be using it again with this next radiation treatment.

Good luck to you. I'll be thinking of you and keeping you in my prayers.


Surgery:10/09 removed tumor rt floor of mouth/mandible,4 molars,rt neck dissection removed lymph nodes; reconstruct:flap lft forearm,skin graft lft thigh. Chemo-cysplatin/radiation.
Surgery:04/10 lft neck dissection removed tumor,muscle,jugular vein,lymph nodes.Chemo(Carboplatin),Erbitux/radiation.
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You have me laughing as usual with your words about our Lone Ranger apparatus. Only you Charm.


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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I found it very helpful to wrap my teeth and gums in gauze. It made it easier on the hot spots.


6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
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Posts: 138
Do you have any aloe plants at your place? My daughter cut off a leaf from the aloe plant and rubbed it directly on my skin as soon as I got out of radiation, before I even got in the car to go home, and I had hardly any burn at all.


BOT-SCC Partial glossectomy 7/16/09.
Stage IV, Rt ND 10/2/09.
Teeth out 11/5/09.
Port/peg in, 11/20/09.
7 wks rad & chemo, end 1/22/10
lung, colon biopsies 1/9/11 - both cancer
colon resect surg 1/10/11
Folfox + Avastin - discontinued 6/11
lung surgery 3/13/12, 5/1/12
mets to liver and bones
passed away 9/4/13
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