| Joined: Oct 2014 Posts: 14 Member | OP Member Joined: Oct 2014 Posts: 14 | Hi Everyone, just completed Week 1, and started Day 1 with cisplatin and IMRT radiotherapy. Pretty uneventful, the anti-nausea medication in the cisplatin IV kept things under control.
My big challenge is not from this cancer treatment so far, but from the major oral surgery I had 4 weeks ago which is still causing misery in my mouth! No problem with the extractions tooth socket healing, but there's a constant scraping and gouging of my tongue against some kind of bone which the dental surgeon cannot locate (I do have severe trismus, to be fair). Can'teat, cant talk, can't sneeze, sleep, hiccup, cough, swallow without scraping tongue pain!! Whenever I drink something, even very plain consomme, it kinda puckers up the sides of my mouth (some gland?) and it feels like swelling up inside, thereby causing more friction on any tongue movement. Never knew raw tongue pain can be so tough. This was unexpected and somewhat depressing!
QOL
_________________________________________________________ Oropharyngeal SCC, HPV-based, tonsil, tongue, and throat. Stage IVa Trismus, neglected dental health Age: 64, smoker aged 16-32 yr. Diagnosed: 01/2014 (personally suspected well before that) Self-treat (Cancell + mushrooms): 2/2014 Mexican clinic (Alternative): 6/2014 Will begin conventional treatment soon, mostly IMRT radiotherapy, with a little chemotherapy (cisplatin) in sessions 1, 22, possibly 43.
| | | | Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | QOL
Sorry you are having all these problems from a dental surgery 4 weeks ago. Sounds like there is a problem somewhere . Seems like this should have healed by now. Since you have started your RAD & Chemo Treatments I would hate to see the side effects set in on top of all this. You really need to keep your food intake up. If you continue to go to long without eating maybe you should consider the feeding tube.
Make sure you have some good pain meds. available. If what you have is not strong enough ask Medical Oncologist for stronger.
You might have to seek another opinion from different Oral surgeon.
I hope you get well soon. This sounds very painful.
Heidi
Sweetpe Caregiver RE:My Mother Age 70 Non Smoker SCC 3/4/2014 Left rear jaw Mandiblctmy 3/25/2014 35RAD Completed on 06/03/2014 MRI 9/3/2014 25mm lobulated recurrence left mandible/floor of mouth carcinoma 9/23/14 Salvage Surgery MET(s) 9/23/14 Salvage Surgery Not Successful Chemo Recommended 1st Round of Cisplatin Chemo Started 10/20/14 Cisplatin stopped 11/20/14. Side affects to bad. Chemo started again 1/22/15 Carbo/Docetaxel Passed Away April 22,2015
| | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | I agree with the she may need more/better pain meds from above. In about week 4-7 of radiation I had to use oral lidocaine rinse before every meal (and often times between meals also). By week 7 I had to use it both before and then during the meal to be able to get a whole meal down.
Be careful though, too much pain relief and she won't be able to feel the inside of her mouth at all. That could be really bad during meals as she won't know if she is chewing up her own tongue.
Good luck with all this, it's a tough road to travel.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: Oct 2014 Posts: 14 Member | OP Member Joined: Oct 2014 Posts: 14 | Thank you for the pain medication advice. I'm a very light user of medication if at all possible so not quite at the lidacaine stage yet. Just finished Week 2 today, so thanks for the caution!
QOL
_________________________________________________________ Oropharyngeal SCC, HPV-based, tonsil, tongue, and throat. Stage IVa Trismus, neglected dental health Age: 64, smoker aged 16-32 yr. Diagnosed: 01/2014 (personally suspected well before that) Self-treat (Cancell + mushrooms): 2/2014 Mexican clinic (Alternative): 6/2014 Will begin conventional treatment soon, mostly IMRT radiotherapy, with a little chemotherapy (cisplatin) in sessions 1, 22, possibly 43.
| | | | Joined: Oct 2014 Posts: 14 Member | OP Member Joined: Oct 2014 Posts: 14 | The oral surgeon I believe is quite an impressive and knowledgeable doctor. The big challenge is the trismus (lock jaw) keeping my jaw opening so limited, so she (or anyone else) really can't get in to see much in there. Even the extractions were very, very difficult because of the limited mouth opening. Yes, you're analysis is correct, but I might just have to wait it out and hope for the best. I'm on feeding tube full time now, no oral food intake.
QOL
_________________________________________________________ Oropharyngeal SCC, HPV-based, tonsil, tongue, and throat. Stage IVa Trismus, neglected dental health Age: 64, smoker aged 16-32 yr. Diagnosed: 01/2014 (personally suspected well before that) Self-treat (Cancell + mushrooms): 2/2014 Mexican clinic (Alternative): 6/2014 Will begin conventional treatment soon, mostly IMRT radiotherapy, with a little chemotherapy (cisplatin) in sessions 1, 22, possibly 43.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | If you are able to still swallow sips of water, I urge you to do so several times every single day. Believe it or not, the swallowing muscles quickly deteriorate when not used and can actually forget how to function correctly. Swallowing tiny sips of water will keep them active enough so you dont have trouble after all this is finished. ChristineSCC 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 | | | | Joined: Oct 2014 Posts: 14 Member | OP Member Joined: Oct 2014 Posts: 14 | Thank you ChristineB. Yes I can sip water although it's uncomfortable and eventually makes me choke and splutter. And I am constantly swallowing saliva, for now anyway, until later apparently it dries up.
QOL
_________________________________________________________ Oropharyngeal SCC, HPV-based, tonsil, tongue, and throat. Stage IVa Trismus, neglected dental health Age: 64, smoker aged 16-32 yr. Diagnosed: 01/2014 (personally suspected well before that) Self-treat (Cancell + mushrooms): 2/2014 Mexican clinic (Alternative): 6/2014 Will begin conventional treatment soon, mostly IMRT radiotherapy, with a little chemotherapy (cisplatin) in sessions 1, 22, possibly 43.
| | | | Joined: Oct 2014 Posts: 14 Member | OP Member Joined: Oct 2014 Posts: 14 | ChristineB, may I ask what your hyperbaric oxygen treatments were for and who recommended it?
QOL
_________________________________________________________ Oropharyngeal SCC, HPV-based, tonsil, tongue, and throat. Stage IVa Trismus, neglected dental health Age: 64, smoker aged 16-32 yr. Diagnosed: 01/2014 (personally suspected well before that) Self-treat (Cancell + mushrooms): 2/2014 Mexican clinic (Alternative): 6/2014 Will begin conventional treatment soon, mostly IMRT radiotherapy, with a little chemotherapy (cisplatin) in sessions 1, 22, possibly 43.
| | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | I had just the beginnings of trismus when I was in treatment. I noticed my mouth would only open maybe 2/3 to 3/4 as much as it did before cancer. My doc said I had to exercise the jaw, ie open it as much as I could, to the point of pain. He also said take your fingers and try to stretch it open even more.
I did this every day while driving to and from radiation treatment. Today, one year later I think I have normal mouth opening and closing. My dentist concurs when she examines my teeth.
take care, you will get there Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | I did HBO several times due to not healing or needing dental extractions. I first did it in 2008 after surgery for my recurrence when I didnt heal. Since it not even one year from when I had finished rads my body just couldnt bounce back. I last did them 2 years ago for some bone fragments that were breaking thru my jaw. Its a love-hate relationship I have with HBO... I love how well the treatments work, but I cant stand being cooped up in the glass tank for 2 hours when I have a million other things that need my attention.
Dont stress about the dry mouth you keep healing about. You shouldnt experience dry mouth for weeks. That affects most of us about 3-5 weeks post rads. You will join us always carrying a water bottle everywhere you go. ChristineSCC 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 | | |
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