I'm New and Was Just Dianosed With Oral Cancer.

Yes by all means go ahead and email me. I live by myself in my apt. if i went in the hospital i could find someone to watch my cat. I'm on disability and after tthe surgery i could get help through my social worker with chores around the house. It's strange finding this out after not smoking for 10 yrs and next month is my 46 birthday. I thought i went through enough with the brain surgery at the mayo in 2000. Oh, well I got back into the church seen bigtime, maybe that will help, This guy at church gave me some healing scriptures.

Kevin, Find out from your Dr. if you will have a feeding tube or not. You will need to stock up on Ensure and plain broth. chicken and or beef. Also stock up on cat food and litter. You will not feel like shopping for a few weeks.If you like to read you might stock up on books as well
You will drop some pounds. I went to Target and bought some sweat pants in a smaller size.
You might check and see if the hospital has a volenteer center and get someone there to help you also. You can buy a blender, if you don't have one and and use that to make things you can get down. At my cancer center they has a receipt book for things to put in the blender.
Ask questions, make a list of things you want to know.
I am glad you are back in church. I am going to ask a group called "Prayer Warriors" to add you to their list.I will continue to pray for you and ask friends to as well.
Will you be at a V.A. hospital?
My e-mail address is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---Feel free to email me.
When do you go back to the Dr.?
Know that you are in my thoughts and prayers and feel free to ask any questions you might have.
Mildred

hi,
i too have had oral cancer,at the age of 30 i was diagonsed. 3 partial glossectomies and a right neck dissection,chemo,radiation and a feeding tube later,here i am...lol....hopefully for a long time to come. would love to know how you made out.best wishes

rose

Hello Kevin,

I just now read your message and it's four months later so I presume you are now, or have been, under treatment.

Just want to send a note saying that my husband was diagnosed with a tumor on the base of tongue in August '05. He had 39 radiation treatments at 7000 centigrades and three chemo treatments with carboplatin. He also had a shot of Amifostin before every radiation treatment to save the salivary glands. This concluded on November 28th last year (2005), and so far he is feeling fine.

My husband had major weight loss, big sore on the neck, sore and difficulty swallowing, very tired and slept a lot and still does... it's a very tough treatment.

But now he is almost himself again - has gained some weight but needs more, his PET scans are clear so far; he has taste and smell, not as much saliva as before but he's not without; he's working in the yard, planning to re-tile the bathroom...

We attend a support group every month through SPOHNC, which is very informative and helpful.

There is light at the end of this difficult time.

Take care, Swede

Hi Rose they did a 12 hr. operation at the mayo clinic, removed 40 lymph nodes and they believe they got all the cancer. I had 6 weeks of radiation and recently just got home. Swallowing is still difficult and still have the feeding tube of course. they made a 20 inch incision in my left leg and took out a muscle to make 1/2 of my tonque complete, thanks, Kevin

Hi i wish i would have known about the amifostin, I would have asked them before giving me radiation to give it to me to save my salivitory glands. Let me know how your husbands swallowing is doing? thanks, Kevin

My husband had tonsil Ca 3 yrs ago. Had radical neck disection, 13 hr surgery with wrist tissue grafted to thraot. All this followed by 6 weeks of radaiton Tx. We chose no amifostin because only 50/50 chance it will protect salivary glands. Instead we went with IMRT radaition which is a fine precise radaition wiht minimal salivary gland destruction. He lost some salivary function but compared to others I see (Am A Dental Hygienist) he is faring better and I believe he will not have hte problems with tooth loss and Jaw necrosisi seen in some of the older tx cases. Jim is 3 years cancer free and doing well. Keep praying, depend on God to see you through and seek all new information. Don't let the Drs. railroad you inot accepting treatment until you've looked at all choices. Get in touch with oral Ca support group and talk to others who have experienced different types of treatments. God bless you.

Hi Kevin:

I hope you are recovering well.

Radiation caused serious burns to my neck, especially the right side where I had the full dose. Kaiser prescribed Silvadeen. It was almost like a miracle drug; the burns healed very quickly. However, this gave me a false sense of optimism. I expected the inside of my mouth and throat to heal within the next few weeks. It did not work that way. I am still a bit sore and a little sensitive to some foods. I have had no problems swallowing for many weeks now but the ridges of my tongue are not completely healed. Nonetheless, I have had a dramatic improvement over the last 6 or so weeks. I can handle a moderate amount of mustard, e.g.

I do have some saliva but not enough. However, I do not panic if I walk off without a water bottle - I sometimes go a few hours without any. I also go the entire night without water. If I breathed through my nose all night I probably would not be dry in the morning; but I breath through my mouth so I am quite dry in the morning. Even then I feel no urgency to drink water. But I do drink a lot of water with each meal, of necessity.

In case you are having a difficult time gainng weight you might try CNC's "1850 Weight Gainer". I had my last radiation treatment on October '05, by which time I had lost 28#. I thought I would start gaining weight in no time. Instead I continued to lose another 24#. On February 6 I started using 1850 and began gaining weight immediately. At the present time I seem to have plateaued at a gain of 15 to 17#. However, I have reduced my intake of 1850 so that may be the reason for the plateau.

Regards,

Harv

 

On 11/16/2005 Awisesoldier wrote:

Hi I'm Kevin and was just diagnosed today with oral tonque cancer. Alls I know it is maligent, can be removed, and I have a tumor in my tonque. they say i got it from smoking but quit smoking 10 years ago but smoked 15 years ago before that. I'm interested in hearing from people who have had similar situations and how they're treatment and outcome have came out. I'll know more next week, but scared and lonely at the moment.thank you, Kevin

HI Kevin, 2 years ago I was diagnosed with head and neck cancer, I went in and had the chemo, the radiation and a disession of the neck , which means they surgiclay removed the lymp nodes on the left side of my neck. I also smoked about 10 years prior to the cancer. I must say there were times that were tough especially with the radiation after effects, very hard to get food down, and sore throat, plus lots of phlem, BUT, with some carefull planning, and a positive attitude ,and the GRACE of GOD, I was able to move on and overcome most of the problems.Your Doc. can give you some great tips on what to expect,as far as eating and ways to keep your strentgh up.Preparing foods to liquify them in a blender and to keep you hydrated is very important.Cancer is scary and very demanding but hang in there, You can do it ,there are many of us that have it and many of us continue to survive ,by being POSITIVE, GOD bless, keep us up to date, Joe T

i have just finished 36 radiation treatments and 7 chemo treatments fot base of tongue fourth stage cancer the Doctors are now recommendend Brachytheraphy for me. Has anyone out there been through this treatment.  I am so scared and have now Idea what to do