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curly Offline OP
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So I consider myself a pretty tough cookie, having been through a lot in my 38 years. Right now it hurts to swallow and I have mouth sores on my tongue and on the inside of my bottom lip. I did not have radiation yesterday or today due to the hurricane (I am being treated in NYC). I know you guys have been through this and much much worse, but I just do not know how I am going to get through the next 5 weeks & the 2 weeks after. Already I am in pain. I have magic mouthwash and I am using the manuka honey. Hoping I can go in for treatment tomorrow and maybe get some additional meds. Sorry to complain on here, just need a boost form those who have gone through this, thanks so much.


Stage 1 tongue carcinoma in 1999 and again in 2001, removed surgically. Stage II tongue carcinoma in 2012, surgery, neck dissection, flap from forearm, trach (removed in hospital before leaving). Finished 30 rad tx on 11/28/12.

Jessica, age 38
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"OCF Canuck"
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If I understand correctly Jessica, you are having these problems after 2 weeks (10 treatments?) If so, that is quite early to have such serious side effects, but we are all different and you will need to buckle up your seatbelt because it sounds like it is going to be a rough ride - but one that you NEED to take.

As you mentioned, you need to see your doctor to get the right pain medication (something other the topical things you are talking about). In the meantime, use over the counter things like extra strength tylenol or T1's from a pharmacy.

Be sure you are eating as much as possible, and keeping well hydrated. That, plus being kind to yourself - getting a daily nap in - will help you to feel a bit better.

I have been through it twice. No, not fun but we know you WILLl get through this to finally get rid of the beast.

Right before I had my first set of treatments, I read a quote attributed to Winston Churchill - "You will never get where you want to go if you stop to throw rocks at every dog that barks".

Where you want to go is GOOD HEATH. The barking dogs are those side effects that are distracting you. Stay focused on your way to GOOD HEALTH - that is where you want to go and to a certain extent you are just going to have to plow through this to meet your goal.

We are here with you to help you along the way.

Hugs

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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Jessica,

it's OK to complain on here, it's what we are for! Pain is the enemy at this point so be sure to work with your medical team to keep this under control.

I remember the feeling actually of thinking "How the hell am I going to get through this" and in the end I had to just put my head down and drive on through. That's not to say that I did it by myself, I'm thankful that I had family and friends that picked me up and carried me (literally) when I didn't feel I had the strength to go on. Rely on others to help you, physically, mentally, and emotionally. These forums did that for me in recovery after the mandiblectomy when I was stuck in bed on a sh!t load of opiates. I often wonder how much easier I would've had it had I found these forums before treatment and surgery, sadly I found them 11 months after being diagnosed.

Hang in there my friend and just take it one step at a time and focus only on what you have to do next.

Keep the faith as my dear friend would say.

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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curly Offline OP
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Thanks Eric, I really needed that so much. Donna thank you as well. When I saw the doc last week and asked for the magic mouthwash (I did not have any sores yet but thank goodness I asked for it) she told me that I will get mouth sores. Got them like 5 days later. We had a hurricane so I have have been home resting, not sure how long I will be able to work since I am in pain right now. Guess I will just need to take it one day at a time.


Stage 1 tongue carcinoma in 1999 and again in 2001, removed surgically. Stage II tongue carcinoma in 2012, surgery, neck dissection, flap from forearm, trach (removed in hospital before leaving). Finished 30 rad tx on 11/28/12.

Jessica, age 38
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One day, one step my friend. Let's talk to the Dr's and see about getting your pain under control, it will make the road easier. Hang in there and know you have us in your corner my friend.


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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It is as always a one day at a time prospect. The manuka helps but so early in it does sound like you are going to have a tough time of it. Be meticulous about rinsing with the baking soda rinse, do it after you eat or put anything in your mouth. Some foods - texture, or ingredients are irritating. Try cleaning your teeth with something less shocking like a natural tooth paste with a different flavor, as peppermint burns, so does the flouride. A different toothpaste flavor( I use a fennel one bought at a natural food store ) will help. Try softer, bland foods, and thicker luke warm drinks. Pump up your protein intake as it's healing. add some to a smoothie, just to help increase calories. It will be a long hall. But keep in mind... survival is your goal. Even if it hurts like a bugger, you have to get your nutrition, and fluids. push yourself to meet your needs in this respect. Then make sure you get some decent pain meds from the dr.
hugs!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Jessica you CAN get thru this. We are here to help you every step of the way. Quitting is NOT an option. You will suffer thru like we all have done. No, its not easy at all but you must force yourself to push thru and finish every single treatment. you dont want to be in a situation where it comes back and your options are limited.

Get something for your pain. many including myself have used the fentanyl patch. You should start out with a 50mg and can always go up or down from there. Every change is a stepping stone and will need to be gradually reduced back down. Follow the directions exactly! never bend, fold tear or cut the patch. No long hot showers or baths. It takes about 24 hours for your body to adapt to the patch and you will feel some relief when it kicks in.

Also ask for a prescription for magic mouthwash. That will temporarily numb your mouth so you can eat and drink. No matter what you need to keep swallowing every single day even if it hurts. you dont want to have problems later with relearning how to swallow again.

Ask your doc for a prescription to get hydrated 3 times a week (Mon, Wed and Fri) in the chemo lab. This will greatly help you to get enough liquid intake. The key to this whole thing is your nutrition and hydration. Every single day you MUST get 48 oz of water and 2500 calories. If you dont get that much then you will feel so much worse and have a much harder time. Push yourself if you have to but do whatever it takes to get these amounts every single day. If you dont it will catch up with you and you will end up being hospitalized. It happened to me so I am very well versed in this. I felt like I was dying being malnourished and dehydrated. If you can get 3000 calorie and 60 oz of water a day, even better! I know it sounds like an outrageous amount but its not at all, its the minimum. Your body is fighting the cancer and also the treatments trying to rebuild itself which burns up calories at an incredible rate.

Not sure if you have a feeding tube or not but if you are struggling you may need to get one. If you have one ask for a feeding pump from your doctor. It takes a prescription. You can let this run overnight while you sleep and get an extra 1200 calories while you sleep. That will help you to meet your daily requirements. Talk all of this over with your nurses and doctors. they are there to help get you thru this. Ask for a nutritionist too, they can give all kinds of advice. Oh yeah, here is a list of easy to eat foods which may help you to take more in.

You CAN get thru this, we will guide you and help you every step of the way.
Hang in there!!!!!

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621



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
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curly Offline OP
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Thanks so much. Husband just made me a canned peach/yogurt shake which I managed to down with help from magic mouthwash, which is good. Trying to avoid the PEG if possible. Christine, that list is invaluable, thank you!!! I am wondering the the sores came out because I missed treatment yesterday and today? Probably not but ugh vey, this is going to be rough.


Stage 1 tongue carcinoma in 1999 and again in 2001, removed surgically. Stage II tongue carcinoma in 2012, surgery, neck dissection, flap from forearm, trach (removed in hospital before leaving). Finished 30 rad tx on 11/28/12.

Jessica, age 38
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Posts: 8,311
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Need to get the pain under control and then get plenty of cals and water each and every day. Also watch out for contispation which can follow the pain meds. Get some Boost VHC which has 560 cals in a small 8 oz can.


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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Hang in there Jessica!
It sucks, we know, but like everyone has implied or said "quitting is not an option". You are way too young to not fight this with everything you have.
Did your ro give you a script for Diflucan? Sometimes the mouth sores are from thrush. Just a thought.
You can do this.
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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