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

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

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

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!

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.

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.

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.

ChristineB, may I ask what your hyperbaric oxygen treatments were for and who recommended it?

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

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.

Thanks for the insight, and setting expectations on the time things need to heal. I never thought oral surgery and trismus would be such a major detraction from my quality of life. Frankly, I'm much less worried about the actual cancer at this point! I'm glad to hear HBO was effective. Do you think it's OK t do HBO while my radiation sessions are still going. I could use some mouth healing.

Can you explain in more detail on what sort of bone fragments and how they were breaking through the jaw? Are these bone fragments jutting out from the inside roof or floor of your mouth? And how did HBO actually improve this?

In regards to doing HBOT during treatment, it is my experience that with active cancer it is not done, and had to wait two years myself to finally complete my treatments (numerous recurrences), and have a clear scan, even after 3 months, had to wait until six months after radiation, which was around my second clear scan, for them to agree do my extractions with HBOT. There are some that say HBOT can increase risk of cancer spread, through angiogenesis, and some studies say it doesn't. It may have been a coincidence, but 2 months after HBOT in 2011 I had a recurrence. Maybe if the benefit outweighs the risk it may done or if the doctors think it doesn't matter.

All my doctors were involved, in agreement, with the extractions, HBOT process...two RO's, ENT, MO, OS. HBOT doctor required insurance approval, a letter from my ENT, OS prescription, a physical, chest x-ray, medication for high BP.

I hope the helps, and ask your doctors. You may get a different answer.

Thanks for all the helpful detail on HBOT. Will proceed with caution.

Christine, I saw your post in another thread that maintaining adequate nutritional levels is very important, somewhere like 2,500 to 4,000 calories. I find this very hard to do, and my wife is excellent at finding dense nutrition sources.

I'm exclusively on a feeding tube now so do you know if there are recipes for preparations that are such high calorie density?

Yes, I agree with Paul. This is precisely why we did not proceed with HBO. We were told that it could accelerate the growth of any cancer cells. Something you definitely do not want to do while still undergoing treatment to eradicate the cancer .
Tammy

My mother has a spot under her chin where a sergical biopsy was done and it will not completly heal. I mentioned HBO to her Oncologist and he said

"You have to be careful with that because it can feed the cancer cells along with the good cells".

We definitely don't want to do that.

How sad that something so potentially useful like HBO can feed the cancer. I thought of that when I went to a talk given by a dietitian yesterday.She said that taking high doses of vitamins can also reduce survival. It seems counter-intuitive.

OK, just finished Week #3 today and everything has gone fairly well so far. Even managed to add 2 lbs.!

Throat does feel raspy and dry. Even swallowing plain water feels rough.

Tongue pain due to lacerations and sores from oral surgery has finally improved.

Second bag of cisplatin coming up next Tuesday, Day # 22 (yeck!). Hope this is my last one, there's a chnace not needing a third one.

Bracing myself for the really rough times coming up. Wish me luck!

OK, done with Week #4. So far still hanging in, no big radiation side effects yet. Some roughness in the throat. Had 2nd bag of cisplatin chemo, given me some mild nausea. Just a couple of times dry retching, no vomiting, more noticeable effects are a lot of hiccuping.