Mom had her 7th tx today. After her 5th tx she said about 20 minutes after she started having burning pain in her mouth and gums. Yesterday she woke up in horrific pain and said it felt like her molars were throbbing...she hasn't had her molars for about 20 yrs. The blisters are starting and when she first wakes up she kind of reminds me of Goldie Hawn in the "Ex-wives Club" after too many botox tx's, or Donald Duck. I sent for the biotene products, the box arrived just in time (Thanks you Mr. Hill!!)! The oral balance seems to help a little, but Aquafor seems better. I also have given her benadryl for the swelling. That also seems to have relieved some of the pain. I think I may look into that patch for pain for her. She is constantly in a lot of discomfort now...it's upsetting her because she was doing so well.
I am having a bigger problem getting her to eat as she has a hard time opening her mouth, can't wear her plate because her gums have already changed. Does the rigidness ever go away?
I'm sorry for rattling all of these questions off but I seem to run oout of time so quickly lately.
Thanks for your help. I hope everyone has a nice evening.

Several things. This is the beginning of the mucocitis sores developing. They will get worse as her treatment progresses and she must have pain meds available to her NOW. To give you some idea of how bad this can get, I was on morphine and pseudo-morphines for the better part of 9 months. She should be doing daily exercises to offset the effects of trismus that is beginning to take place, and will limit the opening of her mouth. This, if not dealt with now, can be irreversible. Stacking tongue blades in her mouth between her front teeth and stretching her mouth to the maximum number of blades several times a day all the way through treatment and for several months thereafter until the healing has taken place is a necessity. Failure to do this can leave her with life long consequences. Her doctors should have prepared her and the family for this ahead of time. It sounds to me like they are behind the curve in several areas here.

Please let her doctors know about her degree of pain. Also consider if she is unable to eat properly already she will begin to rapidly lose weight, and the lack of proper nutrients will slow her healing and ultimate recovery. Once she has lost 10-15% of her body weight a PEG feeding tube will become a necessity and you may consider getting it put in early. It is a simple procedure and it is better not to wait until the nutrition issue becomes a serious problem.

Lastly, Mr. Hill was my father...everyone calls me Brian.

Regarding trismus: I have not heard anything from my RO about this either. My case is somewhat unusual (wife is MD), but still it would have been appropriate to bring this up anyway. ( I got my info from this board here). Even controlled yawning would help.
I am not sure how this is handled in other places, but I saw my RO only once a week. If the treatment is uneventful this is ok. But depending on what is happening a week can be a long time for uneccessary pain, if for instance you develop thrush etc. If your situation is the same in terms of RO visits do not wait and just contact the RO and make them deal with the problem.
Regarding PEG: I got mine the second week of the treatment, and I did not use it until the last week of radiation at which point I simply had no choice. A PEG is a good thing you can also use this for hydration. In addition, to what Brian says I cannot help but think that installing it has to be more uncomfortable when your throat is already sore from the radiation.

Best wishes

Markus

By the way a normal person can put four fingers in their mouth (about 3").

Good Morning Brian, Markus and Gary,
Thanks for the advice. I am going to email the RO when I am done here. My mom has her rad appt at 1:15pm today in the same bldg her RO is in. I
have never heard of stacking blades, but will ask for them today. My mom has only two teeth left in her mouth, they are on the bottom, to be used as an anchor later (Thanks Dr. Jerry Wilck for stepping in and finding a way to ssve them!!). I wonder if her upper plate, which doesn't fit well at all now, can be used to hold these in? Do you know if these plates are readily available?
As for the pain, she is currently on neurontin, and oxycodone, 5mg-30mg, every 4 hrs for pain. I don't think it is enough, she told me last night she finally has it under control. She is very resistant to changes, medications and anyone sharing too much info with the doctor.
I am going to print out this page to share with her and my dad to show them how important it is to do all this.
Gary--by the way, I have sat here trying to get 4 fingers in my mouth. I'm glad I am sitting here alone, I can only imagine what my family/kids would think if they say me trying!
I guess that's why you said a normal person could do this....I am anything but normal!
Thanks again everyone. Will let you know how I make out later today.
Enjoy the day!
Donna

I almost forgot to respond about the PEG. She has already lost close to 10% of her body weight but is now beginning to lie about it....says it was her plan in the beginning to lose weight. I know she is afraid, she never is one to not be honest, and she seems to forget that I live with her and know what she weighed at her 4/25 visit. I assume this is going to be a big issue with her.

I used the search engine above and found the info myself...so proud!

Brian--
if it was not for this site I think I would be drowning by now. Thank you for the insight and for caring so much about other people that you took the time to create a place for all of us. I have learned so much here and I enjoy everyone I have met along the way...feels like home....a safe haven when in my life outside of here is so chaotic.

Donna,

And anyone else in the Princeton, Trenton area of NJ or Bucks Pa. I have a wonderful PT in Lawrencville, NJ that specializes in trismus and TMJ issues. He also is the one that put me back together after each neck dissection and does an occasional tune-up when my arm stops going over my head on the right side. He has been associated with HUP at times doing research and treating patients there for trismus. Will try to remember to ask on Friday if he still treats at HUP .

I also go to a very good MD Anderson trained prosthodontist in Princton who specializes in making dentures for cancer patients, dental implants and other prostheses.

If anyone wants the names, addresses and phone numbers of these specialists, please email me.

Take care,
Eileen

Donna,

We were told that Dan should put 3 fingers in his mouth daily. I chuckled at your post, because I tried it too...when we were meeting with a swallowing expert...and, I had trouble (bad tmj).

Dan was also told to try to make a high pitched E sound 20 times a day. I noticed when I tried that, it works a lot of the muscles in the throat. But, no one on his team mentioned anything about stacking blades. When you find out what those are, will you post about them?

Pain, with my husband, seems to be a moving target. Are you seeing that with your mom, too? The Fentynal patch seemed to work best of all that Dan has tried, although he had other side effects from that and had to switch to oxycodone pills. I wish he could have stayed on the patch, as I could see the difference in the steady release of pain medication from the patch vs. the pills. Plus, it only needed to be changed every 3 days, so less pills to swallow on his end.

Dan, like your mom, is also very resistant to talking about pain and medication with his doctors. Although, that is getting better.

How is your mom handling the Erbitux? Has she gotten the Erbitux rash yet?

How are you holding up?

I can actually fit 4 fingers in my mouth now - post Tx - Probably all of those years yelling at my ex-wives (ha ha)

Margaret,
They have time release morphine patches also.