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#99637 07-17-2009 05:01 AM
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Ok! Just a quick rundown on what is going on for anyone who cares how this TX has affected me so far. I began July 1st weighing in at 200.8 (in the red corner). I now weigh 195.8 and have been eating everything in sight! So far I have had a small bout with thrush which is now pretty much over after taking a couple meds. The left side of my tongue is getting pretty sore and my tongue as a whole is very swollen, you can actually see my teeth marks on the sides of my tongue. I have a couple small white sores starting to form which I have been rinsing with salt,baking soda and water. I have also everynight dipping a qtip in peroxide and swabbing the sores (dont know if thats a good idea it burns like a SOB) Everything I eat tastes terrible! I have yet to find something that tastes tollerable food or drink...any suggestion would be helpful? My mouth of course is dry as hell and my saliva is thickening up. However my doc says it looks pretty good and it might be from the $90 a week caphasol I have been rinsing with 8 times a day!!! My throat has been slightly sore, however I woke up this morning and it was very very dry and burning! Worst morning by far! Glad I will have 2 days off coming! My energy level has not been affected yet, I have been staying very active playing golf and working around the house. I have not been napping however I have been getting a very good 8 hours of sleep everynight thanks to good ole Ativan! I understand the worst is yet to come I said I would give a timeline and keep you all up to date on my situation and I plan on keeping to that! Have a great weekend! Oh and David I was a Sales Manager at volvo not a salesperson...lmao! Always trying to downgrade me...damn CPA's! I will PM you with a couple questions about this years taxes but I have a CPA over here that was a good customer of mine that has done my taxes for the past 8 years.


30 yr old M non-smoker (stuborn ass italian)
SCC left side Tongue 2/17/09, Partial Gloss. 2/25/09
Left ND 5/20/09 10 nodes, 1 pos (1.7cm w/xtra cap spread)
Finished Rads IMRT X 33 8/18/09 (70gy)No PEG, No Chemo
"On the long road to recovery 1 step at a time"
JIM BEERS #99643 07-17-2009 06:13 AM
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Jim

why the hell would you put peroxide in your mouth??????It burns like a bitch.I really think it might be a good idea if you found something a little less caustic if you feel the need to swab.I once splashed peroxide solution in my eyes and nearly lost my sight please find out if this is such a good idea.

sorry to nag

love liz


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Cookey #99645 07-17-2009 06:28 AM
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Jim,

Peroxide is not bad in your mouth if you dilute it with water in equal parts, however, you should really be talking to your MO about this. I know that it is a pain to contact them (to say the least) but, you need to. smile


Donna

Caregiver to Hubby,Stage IVb, SCC to left tonsil, Mets to nodes, Tonsillectomy, Cisplatin,Taxotere,5FU x 3, IMRT 33 Rads + Carbo x 6, RND 03/09--Dx NHLymphoma 04/09, CT of chest, stom, pel--all clear, 05/09 Pet--all clear, 08/09 Pet--all clear
Donna MFS #99647 07-17-2009 06:33 AM
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Sorry Jim.I didn't mean to imply that it was dangerous to put peroxide in your mouth,after all most mouth washes you buy have small very diluted amounts in them.i just wondered why you would want to put neat peroxide on areas that must already be sore.
Be gentle on your self ..bull at a gate can be painful.

love liz


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Donna MFS #99648 07-17-2009 06:44 AM
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Jim,

As each of us can react differently you are right on course for how you will react. Comforting, ugh? I feel for you as 3 years ago today I had just finished my 5th rad and one chemo and was on my way into my unknown which turned out to be very ugly.

Re the taste thing, have you gotten any VHC yet? When you can't taste anything and the pleasure of eating is all but history, it's time to realize that getting the most calories and nutrition in the least amount of time and pain is the goal. So in the 30 seconds max it takes to swallow a can of VHC you get 560 nutritionally balanced calories. Do that 5 or 6 times a day and you have met your goal. That's the way I approached my calories.

Re the Sales job thing that you just can't let go like Margaret and the 20, 20, 80 thing, you had to be a salesman before you were the Mgr, right?


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.
davidcpa #99671 07-17-2009 03:10 PM
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lol, yes I was a salesman prior...I have the VHC and drink 1 every morning but still want to continue to eat solid foods, I use that as a boost. I played golf today and when I was done I sucked one of those down with a bowl of oatmeal. Peroxide does burn like a bitch but I will tell you it helped it, did it lastnight and its much better today!


30 yr old M non-smoker (stuborn ass italian)
SCC left side Tongue 2/17/09, Partial Gloss. 2/25/09
Left ND 5/20/09 10 nodes, 1 pos (1.7cm w/xtra cap spread)
Finished Rads IMRT X 33 8/18/09 (70gy)No PEG, No Chemo
"On the long road to recovery 1 step at a time"
JIM BEERS #99721 07-18-2009 08:31 AM
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Your taste is going to be lousy for a long time. The 1st taste of anything isn't bad, but shame on the 2nd taste on. They have less taste than water and burn the hell out of what's left of your tongue and the rest of your mouth too. None of it will soothe the throat. LOL I want to say something here, but we have ladies . I'll behave for now .


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
EzJim #100134 07-24-2009 10:37 PM
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TGIF. Beers, I finished 12 of 27 today.

My mouth is killing me. I am still working full time in the ER. I talk a lot all day. I think that may be irritating my tongue and mouth. I think my days are numbered at work. FMLA here I come.

So, far I have pink magic, Lortab, Motrin and a hammer to smack my thumb with hoping it will distract me from my mouth. But I am going to talk with my RO about Fentanyl patch this week.

I have been eating anything up until last night, minus the sodas and beer. Switch to soups and pudding today. Think I'll look for some VHC this weekend and take David's advice and chug a meal in 30 secs. Who usually carries VHC? Do I have to get it off the internet?


Dx: SCC lateral tongue April 09, Stage T1M0N0
PET scan clear April 09
Partial glossectomy April 09, no carcinoma present
IMRT started 7/9/09, finished 8/26/09
PEG inserted 7/30/09
PEG removed 9/25/09
ER Nurse


Keep the rubber side down....
HarleyKenny #100135 07-25-2009 12:27 AM
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HarleyKenny...You can order Carnation VHC at most pharmacies (Walgreen's, Target, CVS). You don't need a prescription, however, it isn't generally a stocked item. I ordered through Target and they always had it shipped in the next day.

You can also order it through Amazon. If you do that, use the link on this website to get to Amazon and a portion of your order will go to OCF.

I have to tell you, I read your post without reading the ones above it...and, at first I thought you were announcing that you had 12 out of 27 beers today. Then, I realized you were telling JimBeers you had 12 out of 27 RTs. Glad to figure out that you are not loading up on alcohol during treatment. ;-)

I got a kick out of your unconventional hammer pain relief. That's a new one. Are you able to taste foods? My husband was able to manage home-made mac-n-cheese for the first few weeks of treatment (supplemented by protein drinks). If you need a recipe, let me know.


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
HarleyKenny #100136 07-25-2009 12:30 AM
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You can definitely get VHC from Amazon -- pretty cheap, too (I got a case for 23 bucks). I also hear you can order it through one of the bigger pharmacies like Walgreen's, though I don't know about price there.


Chrissy

Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
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