My best friend was diagnosed with oral cancer last August(2006). She was supposed to be in my wedding on September 9th, but instead she had to have half of her tounge removed the day before the wedding. After that she underwent both radiation and chemo. She was done with her treatments just after Thanksgiving. Since then she has lost so much weight and slowly withdrawn herself from the world. All of her friends and family have been there for her and have been trying to lift her spirits.

On Friday January 9th, 2007 she found out that it was back. Now the cancer is on the back of her tounge and has spread to the back of her throat and is headed up towards the nasal passage. The doctors say there is too much to operate and the only option is Chemo.

I need some advice. I have read so many posts on here, but PLEASE tell me that some of you out there have survived this type of recurrent cancer. I need to give her some hope. Are there any promising chemo drugs out there right now? She is at University Hospital in Minnesota. I believe that she can beat this, but she wants to know what the odds are. I told her that it didn't matter, because she was going to survive and make the odds better. But all the stuff I read about trials of chemo drugs measures their success in "months of survival." What a bunch of crap. Please help. What can I tell her to make her believe she will win?

Gosh, Berr1es, this is a tough one. My doc actually laughed when I asked her this question. She said "I don't know what your odds are if you get the treatment, but i DO know what they are if you don't."

I guess that pretty much sums it up. Cancer is never good news, and recurrence is extra-special bad news. But they only discover new drugs if folks try them, so there you have it. I'm sure her docs will try to find an appropriate clinical trial. She just has to do her part to give it a chance to work.

At least she has a great friend, and that's more than some folks can say. I hope she'll draw strength from you.

Clint

Hi berr,

I am sure you are on pins and needles. Not sure if I will be of great help. I had tongue cancer in 2004 and removed 1/4 only had surgery at that time. Reason for that was if the cancer came back I could have radiation & chemo. Well in 2005 it was back!

I am now at one year and have had all clear on last scan. I can only hope this will continue for the future. This cancer is very aggressive and need to do all that can be done.

Is she at a cancer treatment center? I am not familiar with your University Hospital. I am sure it must be. It does not hurt to get a second opinion. Many here have done that.

I am sure someone here will be able to help you with information on that type of surgery.

You are a great friend! She is very lucky to have you. She needs all the help and support she can get. She may need some Meds. for depression as well. She needs to learn all that she can about her cancer and all options. Hang in there it is a ruff ride.

Take Care,
Diane

Thank-you for your kind words. She gets her feeding tube put in today at 12:30. She is really scared. Even after all she has been through, she still hates IV's! I think that the feeding tube will make things easier for her, but she needs some convincing of that too. She has been slamming boost and ensure drinks just so she could get them down fast so the pain would be minimal. Did those of you that have had feeding tubes find that they made things easier? She also has been taking a lot of baths lately. I think it is the one time when she can go relax in some warm water and get away from things...but now with the feeding tube in she probably won't be able to take them. They are starting the chemo either tomorrow or thursday, but she isn't sure yet what the treatment will be. We are all crossing our fingers.

Lots of friends and family came to visit her on Sunday, but she told me that she felt like they were coming to visit her because they thought she was going to die. Does anyone have a story about surviving inoperable cancer that has spread to the throat and what is left of the tounge? I want to give her good news when I see her on Thursday. But to be honest I am running out of good news. This is the most depressing thing I have ever had to deal with...and I feel extremely guilty saying that, because I'm not even the one with cancer.

berr1es;
I'm a firm believer that baths are a "great escape" and I take one about every evening after work. I have had a PEG tube since August and it has not been an issue bathing. It also became my "best friend" for about 6 weeks during my last battle with this awful disease. With Chemo treatments in the plan has anyone mentioned installing a port? It might be worth investigating, especially if you say she hates IV's. It would save her from bruised arms and collapsed viens.

Whatever you say or do remember, Attitude is Everything and people win this fight everyday. The word recurrence is frightening, and inoperable sounds scary, but it can be beat!!! You even said in your first post you believe she'll pull through, so let her know that as often as you can and leave the odds at the horse track. You sound like the type of friend everyone should have so stay positive for her.

Best Wishes,

Steve

Hello...I was recently diagnosed with Stage 1 oral cancer. But twelve years ago I had breast cancer that had spread during my pregnancy and was only given a 5% chance of surviving with very aggressive treatment. Here I am twelve years later, and I went on to have another child.

Recurring so soon after the initial cancer is a really tough situation. Are you friend's doctors (especially oncologist) connected with a major cancer treatment center? Like others have suggested, quickly geting into an appropriate clinical trial is the best shot at saving her life - even if it means traveling to another state!

Also, a cancer support group will help your friend deal with all the issues she is facing. It sounds morbid, but believe me, talking to other cancer patients can really help her because they know what she is going through. Another post also suggested anti-depressants, and they can also help with the overwhelming emotional stuff right now.

Please stay supportive of your friend. She needs you, and don't forget there are support groups for caregivers and friends of cancer patients. Take care of yourself, too. Please encourage her - whether she has months, years or decades - to take the gift of time she does has and not let cancer take away the joy that still can be found in life.

I'm another person with a PEG who still takes baths. I have to be careful to stick my stomach out enough that the PEG opening is not below the water line (otherwise soapy water can gradually leak around the tube opening into your stomach--not a good thing) although sometimes before I add any soap to the water I just slouch down and submerge myself for a few minutes (which has the added advantage of rinsing the PEG site with warm water).

If baths are that important a comfort to her, I'd encourage her to try these methods. The main thing to realize is that if the tube site is submerged, the water, and whatever is in it, can/will gradually leak into her stomach. Her doctor will probably tell her no baths but if you are a bath lover, there are ways to bath with a PEG!

Nelie