Hello everyone,

My name is Stephany and I am distraught over my mother. She was diagnosed last year with gum cancer that went to her jaw bone. Half of her jaw was removed and now a year later, the cancer is back and they want to remove all her remaining teeth and the rest of her jaw. I just dont know if that will matter since she did this before and the cancer came back. Also, her doctor is recommending radiation every day for six weeks. Please someone, tell me what she can do...What do you suggest? I was doing research on the internet and came acroos this site. I read some of your posts and it brought tears to my eyes. If I can do anything for any of you , please let me know. You all have inspired me that I can get through this. Your strength is admired by me. I am so sad and want to suggest to my mom what could be done to cause her the most success and less discomfort. Has anyone ever tried hyperthermia? I would love to hear your suggestions and God Bless you all

Stephany

Hi Stephany,
and welcome to the site. I don't think any of us could recommend a treatment plan but some here had have their jawbones rebuilt by taking a bone from their leg and have had dental implants as well.

With a recurrence, radiation is a must. Six weeks is pretty much the standard course.

Others on the site have had recurrences and have fought and won the battle so don't give up hope. I am sure that once they see your post they will be responding to you.

Discomfort is a given with any kind of treatment in the oral cavity but the effects can be effectively managed with pain meds. It isn't really the issue anyway - this is a fight for life.

You may wish to get a second opinion from a comprehensive cancer center if you are not already in one.

I will keep you and your mother in my prayers.

Gary,

Thank you so much for responding. I really do appreciate it! She had her left side of her jaw removed a year ago and they put her leg bone in and her body rejected the plate. They had to take it out. IT was very painful and awful for her that I would hate to see her go through the surgery again for nothing. Have you heard anything about the clinical trials or chemotherapy for this kind of cancer? I am researching so much that I am starting to get confused with everything. I think the best information I can get is from other people that I have had this or similar cancer. Thank you so much.
Stephany

Hi, Over 3 years ago I had floor of my mouth down removed plus 3 inches or more of my jaw bone. I had a femur flap that failed. They then gave me a titanium jaw bone.My Doctors call it the bar.They rebuilt my face with my shoulder and lining of mouth from wrist.It has been a long haul but I eat most everything, I talk, a lot. And most of all I am alive!I have one more plastic surgery to go, mouth stretcher and then teeth.The one thing I have learned is that even though we all worry about disfigurement, they can fix it! Cancer is the enemy, get rid of that then they can fix you up. If you had seen me 3 years ago, or even a year ago you would be suprised how I look now.I do not want to give you advice, just want you to know if jaw removed it can be replaced and plastic work does wonders. All this is covered by insurance because of reason for the fix up.Good luck to your Mom.

Gnelson.

Thank you so much for your post. I am so happy to hear that you are cancer free. My mother has a story similar to yours. She had the femur bone in her jaw and her body rejected the metal plate. Thank you so much for responding to me. It has given me hope that this will all work out for my mom. I am so happy to hear that you can eat and that you have been cancer free for 3 years. I am going to pass all these messages onto my mother for support. Thank you
Stephany

Hi Stephany,

Your original question was with regard to what treatments we would recommend. For the most part we aren't in a position to make such recommendatons. The thing we can do is let you know our observations (first hand) and suggest things you might ask her doctors. I think radiation is the most sure way of getting the lowest recurrence rate possible. It also causes very significant side effects and recovery is a challenge. That said, my observation is that I have not heard ANYONE who is surviving this cancer, say they regret their treatments.

A few folks have expressed such regrets when the outcome was that the cancer won the battle. The problem for all of us is how to decide. I'd say don't stop until you know you have won!

As for hypothermic treatments, I have read some about that, I do not believe it has been used in the USA (I may be wrong). I am suspicious about it because you wouldn't find this cancer occuring in folks from Northern Minnesota.

Mark,

Thank you for your reply. I did not know hyperthermia was a rather new treatment, not probably available here in the US. I just feel so overwhelmed trying to learn everything at once. Thank you for your suggestions. I am asking survivors to learn from their experiences. I know it is not a substitute for medical opinion but I do know that you can learn a whole lot more from people who have gone through it, than from a textbook. My mom is going to start radiation and has a surgery scheduled for next month. Can I please ask what to expect from the side effects?? DO you know what she could expect and me, as a family member so I can be prepared? Thanks again and I am so happy to hear that you are surviving this cancer.

God Bless you
Stephany

Hi Stephany, I have to step away from the computer for a while so I can't give you the full list of things she and your family can expect. Take a few moments and use the search tool here and you will find numerous conversations about the effects and helpful hints for all of you. Most notably she will likely loose the ability to produce salivia. That is probably the worst long term problem. If she can get IMRT type treatments she will probably have less long term problems. I also suggest she have a Thyroid test BEFORE starting treatments. This is to have a record of the TSH levels to use as a target if she develops Thyroid problems later. She should start eating high quality food now to build up reserves. She can expect to loose a significant amount of body weight. (20 to 40 pounds or more) The treatments themselves are painless. As the second week or so goes by she will likely start to have mouth and throat sores develop. This begins the worst part of the treatments. I don't want to scare you so I won't go on and on. SHE CAN do this many of us did.

The hypothermia treatments are not "new" they are just one of the many that haven't proven effective. If my memory serves me correct it was tried in Germany and in fact they may still be using it in Europe. You will find there are many many cancer treatment "ideas" out there that don't prove to work when put to controlled testing.

You haven't said if your mom has Squamous Cell Carcinoma as her oral cancer (more common)or if the Melonoma is her oral cancer. Assuming it is SCC then the most effective treatment seems to be surgery and or radiation with some recieving chemo as a helper with radiation. Chemo by itself is not very effective with SCC.

Take care.

Hello Stephany,

I responded to you with a private email.Let me know if there is anything else I can help with.

Patty

Thank you Mark and Patty...FOr responding to me...I went and had lunch with my mother and told her about this web site and how it has helped me and how she should also come in here. Mark, I passed on your information to her and she found it very helpful and she sais thank you. Mark, will she need to have someone with her for radiation or can she do this alone?

Patty, thank you also so much. I am praying for Joe and am sorry to hear about his condition. I responded to you via email also. If anyone has any links or web sites to refer me to, please email me. Thank you all so much. I just am so confused why the doctor would do the first surgery a year ago and say the margins were clear and not suggest radiation. And then a year later, its back. Why didnt the doctor suggest radiation a year ago after her first surgery??? What are your thoughts on that everyone?
Thanks
Stephany