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.

Hi Everyone!
From what I understand the blades are tongue depressors, Jerry Wilck said maybe I can find them at a CVS.
Eileen,thanks for the info, I think mom is going to go with Jerry's office to have her teeth done. They have already helped her so much. She had a root canal done there by Dr. Kanner and she had no pain! I am still in disbelief over that one...my experience has always been terrible. Needless to say, I am very impresses with everyone there.
Margaret, mom is doing better. She is doing ok with the Erbitux, she said the rash has started but I haven't seen it yet. I'm always looking at her-poor thing-and if anything she looks a lot better this week. I will tell her about doing th high pitched E. Also, I am seeing an ever changing pain pattern. This morning when I was sharing post with her she didnn't even remember being upset about the molar area pain right away.
Gary, is it four fingers across, or vertically? We all had a good laugh here today.
I shared all the posts earlier and I think they were a great dose of medicine.

Hi Donna,

I'm glad your mom is doing better. After a tough round of thrush, we're actually having a pretty good day here too.

Dan's rash started on his stomach and back and moved quickly up to his scalp. Initially, they didn't treat it, although it was another source of discomfort. There was some thought that the rash was a "good" thing and a sign that the Erbitux was working well. Now the rash is turning into very dry skin patches vs. the acne type rash it was and we are able to put a rx ointment on it that makes it more comfortable...it is called Biafin. He could use over the counter Aquaphor, but he didin't like that.

We have found that running a humidifier has been helpful for the rash and the dry mouth...not that it solves the problem...just both are a little tiny bit more comfortable when we run it regularly than when we don't.

So, what do you do with the tongue depressors?

Gary, LOL about your big mouth. :-)

Also, thanks, I'll ask about the morphine patch. Dan struggled with night terrors from the Fentynal and it made any kind of consistent sleep impossible. For pain, he liked the patch over the pills...I know he wished he could have tolerated it better. He hasn't been able to tolerate food and liquids as well since he has been off of it...but, the thrush was occuring during that transistion.

A note on thrush, Dan's started last Saturday night around 11:00 p.m. Have you, or your mom been told to be on the look out for that? We knew to be on the look out, and I called on Sunday to have a Rx phoned into our pharmacy. What shocked me is how quickly it went from a small problem to a big problem. And, it took 4 days before the medication started to have an impact.

I would have called it in on Saturday night and driven to a 24 hour pharmacy if I had known that it could move so quickly. I dont' know if that is typical or not. But, on top of the mucositis, that was a major source of pain.

I don't think it happens to everyone, but I think it's pretty common.

Hope that things continue to go well.

I don't know what to look for as far as the thrush is concerned.
The only thing I know about the tongue depressors/stacking blades is what Brian wrote above-
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.
I copied and pasted what he wrote. Hope this helps.
I am taking my younger daughter and two of her friends to the shore this weekend, she will turn 11 on Monday. I am a nervous wreck about leaving my mom. My dad will be home as will my 17 yr old daughter. I don't know why I worry so much, I'm sure they are capable and mom seems to be feeling better. I may ask my Aunt Jane to check in on her. She has dealt with several different cancers, herself, her sister and another friend. She's one of mom's best friends and very, very positive.
I'm going to try to check in, here at the OCF, over the weekend.
Can't thank everyone enough. I continue to share this forum with everyone I meet at the HUP. I hope they remember the slip of paper and log on when they get home.
Donna

Hi Donna,

Forgot to mention in our emails and your post above reminded me that if your mom's upper partial won't stay in while trying to do the stretching with the tongue depressors, she can do it without the partial in. It will probably be better this way, anyway. I needed them after my surgery and it was very helpful. I was given some by my speech therapist at Fox Chase. We don't use them in the office or I would have given you some.

Gary, I think anyone with teeth will find 3 fingers to be normal. Not saying you're abnormal. But 4 fingers, WOW. Must have been a lot of yelling.

Donna, thanks for saying all those nice things about our office.

Enjoy the weekend away, you deserve it.

Jerry

Hi Donna,

Thanks for repeating the info on how to use the tongue blade, I must have skimmed by that. I showed the info to my husband and it is something he is very open to trying.

Sometimes, during radiation, the environment of the mouth changes and thrush can develop. I searched the main site and found this link:
http://www.oralcancerfoundation.org/dental/candida.htm

It shows a not so pretty picture of the thrush on a tongue. Although, that's pretty close to what it looked like on my husband.

I was surprised, in my husband's situation, at how fast it took over in 24 hours. It really got us off track with fluids and calories.

If it happens, I'd page your doctor right away. Ours didn't make Dan come in, he just called in a prescription over the weekend.

I know it doesn't happen to everyone. And, hopefully, it won't happen to your mom.

How fun that you are taking your daughter and a friend away to celebrate your daughter's birthday.

I hope you are able to relax and enjoy! I bet that is what your mom is hoping for you as well! :-)