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rubyann Offline OP
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Went for my one month after treatment check up today, The Doctor said I looked remarkly well, wish I felled remarkly well. Lol
I know what I went thur and how hard it was, but from reading in here and seeing other people at the cancer center, I know I had it a lot easier then most. I was able to drive, shop (with cart), eat, and care for myself, a granddaughter came over and help with the house and a few things. I had my days and nights when I would get sick, and every day (still am) very tired. things are starting to get better. I had a peg that had to be put in with surgery that kept me in hospital for 6 days, but never used it, but for water. it was taken out 2 days after last treatment, picc line was taken out two weeks later.
One thing I was wondering about, I asked the doctor and he said it didn't happen that everything went as planned. but I came home and looked at print outs that I have here. they didn't give me all of them for But on Oct. 21st. the lady was telling me that she was resetting, because it was set wrong and not hitting where the doctor wanted it to. on my papers, it says on 9-2 under calculation errors and warnings that dose near the surface of body mash may be incorrect, It also says the same thing on 10-21. On Oct 23rd. it don't say it. I don't have the ones in between. Is this something that hapens and they fix it right away or did I have radiation in the wrong place? my last treatment was Nov. 10th. 39 radiation and 9 chemo.
I allso was wondering is there anything you can use for night time dry mouth? I have it 24 hours, but in the am, my mouth is stuck togather and I gag and go on for the longest.
I want to say thank you for being here. This site has been a great help.


cancer surgery on July 7th. 2008, I'm now a survivor. cancer free for now. 39 radiation, and 8 chemo treatments.
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biotene mouth spray helps and some keep a spray bottle of water by their bed ... hopefully you will gain more saliva production as time goes on and healing happens but not always is this the case ... sometimes the damage is permanent. wish there was a miracle cure but i guess it is one of those things we learn to deal with and find the things that work for us the best ... but biotene i think is what most use.



Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.

===============================

"Those who think by the inch and speak by the yard, should be kicked by the foot."


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Ruby!!!!

I am so happy to see you posting again. I was concerned since I hadnt heard from you in several weeks.

Glad to hear you are finished and doing well on your road to recovery. The dry mouth stinks, but it is soemthing that can be managed. Keep drinking as much as possible. Try rinsing yoru mouth with a saltwater/bakign soda mixture. The recipie is a quart of water with 2 tsp baking soda and 2 tsp salt. If the salt burns leave it out or cut it back. Use that several times per day. The biotene spray is what most of us used here, that works great. Also there is emdication I think called pilocarpine. That helps to make saliva, it works for alot of people. It didnt help me, just made me sweat like crazy. Glad you are doing well, its nice to see you back.


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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If it concerns you you need to ask the RO what all those notes mean and have someone there to take notes. Re the dry mouth, I just made sure I had a bottle of water in every room of my house and on my person where ever I went and spares in my car. I can't tell you how many water bottles I left at cash registers only to discover a mile down the road. Without my spare I wouldn't have made it home. Oh and one more thing, DON'T EAT SHELLED PEANUTS for a long while!


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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rubyann Offline OP
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I went thou my records and read them all. I got them 3 times during treatmeat. I found 2 more papers for 9-2 and one said the same as the other one, the other paper shows it was correct, 4 mins. later before radiation. I also found a few more for other dates that said it was correct. so I got a answer to my question, It's just something that happens and they have to reset before radiation. I was just reading the last papers I got and some way they put 9-2 in there, and I remembered what the lady had said.
It sure had me worried, I'm new at this and they didn't give me all of my records. I need to learn not to worry about something till I check it out. thanks all.


cancer surgery on July 7th. 2008, I'm now a survivor. cancer free for now. 39 radiation, and 8 chemo treatments.
Joined: Nov 2005
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I've collected all my non-cancer lab results, plus all my cancer-related pathology reports and the various scans on disk but have never tried to obtain my radiation details -- I need to do that because all I have is that little dot tattooed on my chest...


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Joined: Aug 2008
Posts: 48
rubyann Offline OP
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The radiation papers are neat, they have pictures of me on the table with the mask on at different angles, xrays pictures and about 8 detailed treatments. I don't look real with the mask on. I have all doctor's notes, details of weekly chemo treatments, lab. resaults. I have detailed report of surgery. I thought I had everything but some of the radiation are missing, I only have about 8 out of 29. I don't have any scans on disk, just the resaults on paper.


cancer surgery on July 7th. 2008, I'm now a survivor. cancer free for now. 39 radiation, and 8 chemo treatments.
Joined: Nov 2005
Posts: 1,128
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I have some photos the staff took, with my camera, of me on table with mask, and some of the staff at work, etc., but no details like "Set on high for five minutes, remove and stir, then another two minutes"...


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.

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