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#144529 01-04-2012 09:50 PM
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spuga Offline OP
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Hi all,

Thankfully, I have 2 days left of radiation treatments! the worse of came day 15! I have handled it pretty well, but it hurts badly to eat. I have mouth sores and and my throat hurts badly to eat but I want to eat instead of using PEG tube.
I try miracle mouthwash and and oxy or hydrocodone but nothing takes the pain away. not sure about marijuana, not sure if it is medically legal in Texas. also, how long after treatments did the pain affect any of you guys? I am also doing chemo weekly...


Male, 29YO, Non-Smoker/Non-Tabocco use
DX: 7/11 with T4L1 tongue CA
Surgeries: July/11- 1/3 glossectomy,
Aug/11- 1/2 glossectomy w/reconstruction (flap from forearm), Neck Dissection (47 nodes, 1+), PEG
Regrowth after 1 month of chemo -10/29/11
Chemo: 9/13/11, 10/4/11
Radiation w/chemo: 11/11
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Welcome to OCF. You are dealing with alot when going thru treatments. I know how brutal it can be. Alot of us have used the fentanyl patches for the pain. I loved them since you only have to change it every 3 days. Its very easy and is the strongest pain medicine out there. Just make sure if you use them to follow the directions exactly, no hot showers, bending or tearing the patch, etc. It will take about 24 hours for it to kick in. I would guess that since your pain is that bad that you would need 50 or 75mgs. It can go higher, I was up to 150mgs for about a week. There are a few on here who get some help from using MJ.

Everyone is different so we all will react in our own way to things. I would say that most of us began to feel a little better about 2 or 3 weeks post radiation. Its baby steps for a fw weeks after you finish. You should feel almost human after about a month post rads.

Make sure you are getting 2500 calories and 48oz of water every single day. I know the PEG tube isnt fun but it is a tool to get you thru treatments. Also keep swallowing every single day to keep your muscles from forgetting how. Sounds odd but it isnt easy relearning how to swallow.

Here is a list of foods that should be easy for you to eat.
http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621

Best wishes 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
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10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
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Hi there!! I was bad for a week after then things improved. I had 33 rads with two full doses of chemo. Ii started to improve pain wise after week one - was considerably better by the end of week two and pretty decent by one month out - however - I'm not the average - I had pain - but may have a very high pain tolerance. I would rinse with the mouthwash have my oxy chug an ensure then sleep off the oxy - it never got rid of pain just made e sleep through it. You're doing great - you'll be through the worst son enough keep rinsing with the baking soda mix or flattened soda water (you can swallow it. Good luck!


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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Those are all good suggestions. Have any of your docs or nurses suggested viscous lidocaine? I had so many sores during RT that they all just kind of ran together, and swishing the lidocaine was the only thing that allowed me to swallow any fluids.

Christine's suggestion of a Fentanyl patch is a good one and frankly I'm surprised they haven't offered it to you.

Hang in there, buddy. The few weeks or a month after radiation can be just as tough or even tougher than the last week of actual treatment. But it will get better, guaranteed.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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You can do this bub. Take these suggestions from these folks very seriously. They saved me from crisis a few times during my own journey. And do not hesitate to call your docs if the pain is unreasonable, and have them do something to manage that. You have a right to competent and swift pain management. I know a few times I was concerned that I would be looked at as some kind of druggy for asking for pain meds so that caused me to wait to say something about it until it got the point where it was overwhelming me. The best thing to do is to stay just ahead of the pain curve with your meds, don't wait until it hurts so bad you can't stand it. I tried to stay scheduled and then would boost it if I had break through pain.

All my love my friend, you CAN do this.


Dx: 3/11 Stage III glottic laryngeal SCC HPV 16+ Tx Start: 7/18/11 chemoradiation 7wks - Tomotherapy IMRT x 34 / Cisplatin x 7 Tx End:9/1/11]-[as of 1/20/12 - ALL CLEAR!]



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