Hi, my mom was recently diagnosed with stage 3/4 mucoepidermoid of the salivary gland, following neck dissection. She had some node and nerve involvement, and has been told this is a very aggressive cancer and needs to be treated aggressively. Today, the medical oncologist said she will be treated with 3 doses of cisplatin at the beginning, middle, and end of 7 weeks of radiation. Has anyone gone through a similar combo of this drug? What kind of results did you get? The docs are indicating that they rarely see this type of cancer and there is no real "protocol" for its treatment. Any suggestions or similar experiences?
Thanks, Marie's daughter

My friend had stage 4b tonsil cancer. He is young so they treated it with cisplatin & radiation in the same manner you are talking about. This is aggressive and it can be tough but he had a complete response with this treatment. Pet scan showed no cancer 3 months after he finished it.They say side effects are a little worse but the only real issues he struggles with now are dry mouth and weight gain. Taste returned 100%, he even likes things now he didn't before tx. I heard in recent studies, you get better results with cisplatin added to the radiation.Good luck & God bless!Maureen

Thanks for answering. Today's appointments have brought on even more complications to my mom's treatment. The radiologist was planning to begin the treatments next week, but then she visited the dentist who specialized in cancer patients. First, she can't open her mouth wide enough to do the flouride trays that are needed pre-radiation. She also has 4-6 teeth they are talking about extracting and possibly one root canal. All of this will further delay treatment, and she doesn't know how they can do all this dental work if her mouth will not open wide enough for flouride. We're very discouraged today. It seems like just one more blow- and still we can't get started on the treatment that is her only chance of recovery. I'm new to the boards here, but everyone has been so encouraging already. Does anyone have any answers here? Trusting in God, Marie's daughter

Hello Daughter, Dental health is very important for anyone undergoing radiation to the head and neck. It is probably worth the wait to have appropriate dental work done before radiation treatment starts. Mucoepidermoid carcinoma is uncommon compaired to squamous cell carcinoma and as such has less known results and less known survival statistics. We have discussed statistics here at length. Remember each patient is their own statistic. Either a survivor or not.
That said I wonder if something can be started now to cause progress without delay?

I had 3 scheduled Cisplatin treatments along with IMRT and it was no walk in the park but quite survivable. I responded so well to treatment that they cut the last Cisplatin Tx, so I only had 2. I am 27 months post Tx and cancer free.

I am confused though, most of the time patients have problems opening their mouths after treatment not before, is the cancer the cause of this?

I would imagine that they would perform those procedures under total anesthesia in any case.

Like Mark said the type of cancer your mom has is fairly uncommon here but we are seeing more of it.

Here is a link if you wish to explore this further: http://www.thedoctorsdoctor.com/diseases/mucoepidermoid_ca.htm

The statistics actually look a little better than SCC.

Gary,
Thanks for your input. It is encouraging. Yes, I'm a little concerned about the mouth opening getting worse after treatment. I think it is from her surgery because she lost part of the facial nerve as well as the hypoglossal and lingual nerves, both of which deal with tongue movement and sensation. I also think nobody told her to work on opening the mouth so it just got tight after surgery. She wasn't able to chew much due to the tongue numbness, so I think her jaw just got stiff from lack of movement. Does that sound possible? She is working on it now, and it seems to be getting a little better. She goes to the oral surgeon Monday to find out about the teeth extractions. I certainly hope they can do total anesthesia. She's also hoping she can maybe get the PEG tube put in at the same time. Did you have one during your treatment? She has decided it is a good idea, especially considering she already has some eating issues post surgery.

Thank you so much for your input on MEC. I'm going to check the link now. I have one other question for you. How do they check to see how you are responding to treatment? Is it a scan of some kind? I'm wondering how they can tell if there is still microscopic cancer, because that is what they found in mom's lymph nodes that were biopsied after surgery. She also had nerve involvement that was not a tumor, but at the microscopic level. Can they actually test for that?

thanks. Sorry I have so many questions, but it's great to hear from those who have been through similar things. God bless, Laura

As far as how they check whether you are responding to treatment is done in a variety of ways. Looking for markers in the blood, CT or MRI scans, sometimes PET scans, but the gold standard is palpation and visualization (sometimes with a nasolarygnoscope) usually with mirrors. They can't really detect tumors smaller than 2mm so treatment is usually a "shotgun" type of approach anyway.

I did it without a PEG but I am in a minority. It sounds like a PEG is a wise choice. The PEG has to put in by a gastroenterologist.

I didn't have surgery so I cannot comment on it. I do know that some plastic surgeries result in nerve damage that sometimes repair themselves.

They also have devices to help in getting the mouth to open wider, others will comment on that I am sure.

Hi Marie,
I was talking to your mom a couple days ago but we got cut off somehow. That same day I left my cell phone at a gym I was doing a camp at and didn't have her number. Can you send me your number so I can call you? I want to go see your mom again this week if possible. Sorry to hear it's been a rough week.
Minnie

Hi Minnie,
Thanks for all of your support. Mom was worried about you since you were driving when you got cut off. She was relieved to hear that you were o.k. and it was just a cell phone glitch. I sent an e-mail yesterday with the phone numbers. I'm sure mom would love to have you visit or just talk on the phone if you're too busy. Summer is definitely a busy time for moms!
Hope to talk again soon. Laura

hello marie's daughter i had 2 weeks of chemo with rad on tue of the weeks i had chemo it was cisplatin day, for me it did work great,they drew blood every day of chemo and once a week when i was just doing rad i am now 2 and a half years cancer free, it was no walk in the park but i have read alot of stories on here and to be honest i havent had half the problems most have,my taste buds came back quick and there is alot of food i would never eat that taste great now, the way it was explained to me about the dental work is it is better to get it all done before rad as afterwards it is harder on the one going thur it and more likey to get a infection because of the dry mouth, i do wish yall the best and remember the lord is always there to help all you have to do is ask, may god bless