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Tongue cancer....new looking for survivors

AuntyP's picture
AuntyP
Posts: 8
Joined: Aug 2007

Hi i was diagnosed with stage 3 tongue cancer yesterday i have it at the base of my tongue and on the right side. ct scan showed it hadnt spread to my nodes i know im very lucky there, i have my appointment tomorrow to see if we can go with radiation and skip the surgery at first i liked this idea but now im scared of having this thing in my mouth and not cutting it out has anyone else gone this way...they gave me a 50% chance. thank you for reading im really looking for positive out come a glimmer of hope

hipwr1
Posts: 8
Joined: Jun 2007

Welcome to the world of "survivors" - your world has just changed forever, and that is not necessarily a negative thing. I had the same thing, with the exception of the right side, mine was only in the base area. I discovered my 'lump' on 3/16/07 on my collarbone, and was diagnosed stage 3-4 3 weeks later. I had surgery on 4/24 of this year, radical neck dissection removing 23 lymph nodes and tonsils and tonsil beds and a 'scrape' of the spot on the base of my tongue. I had the surgery at RUSH in Chicago (and it was not an option to skip surgery) and 2 weeks later I began my nuclear treatment - 33 radiation burns(every day but weekends) and 7 bottles of Erbitux chemo(once a week) and daily Ethyol injections(to attempt to save my salivary glands). I know it sounds intense, and it was, but the key to what you and I have is ATTITUDE/ATTITUDE/ATTITUDE !!!! The treatment and the side effects and the after effects, SUCK, but the alternative is much worse. I will tell you a couple of important things to consider - put a port and a feeding tube into your body - right now!! The feeding tube will save your life. You will lose weight with the nuclear treatment protocol(I went from 204# to 160# - and that was with the feeding tube), and you will become very dehydrated from the radiation. The feeding tube will allow you to stay healthy and hydrated. I finished my treatments on 6/29/07, and it was hell on earth, but I was back to work within 1 month and I really only missed about 6 weeks during the entire treatment process. I had a follow-up PET scan on 8/3/07 and it was clear, so what we have can be handled and controlled. We will have to continue to have follow-up medical check-ups, forever, but that isn't necessarily a bad thing. You have to always look forward and never look back - that will also save your life. You will become a much stronger person, as a result of your diagnosis, and as humbling as it is, you will learn to appreciate different things more than you ever imagined. I don't know what your support network is, but your friends and family and support network is also very important to your recovery. Ask questions of all of your care providers, and demand answers. Listen to what people offer as advise and testimony, but remember everyone is different and the treatments affect everyone differently. Good luck and fight the fight!! You can, and will, overcome this. Remember the positive attitude. I am hipwr1@aol.com so don't be afraid to e-mail me during your upcoming 'adventure'. My name is Nate from Sycamore, IL and I am a survivor !!!

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

Nate: You are what these Boards are all about. God Bless you for your attitude, your experienced advice and your compassion. Aunty P is very lucky to have found these Boards and in particular your experience which will have a profound impact on her life going forward. She will tolerate then accelerate toward being cancer free thanks in part to you.

You Da Man!!.............Stay well, and God Bless

AuntyP's picture
AuntyP
Posts: 8
Joined: Aug 2007

Thank you so much your replys where great to read....nate i cant thank you enough...yes i will beat this

f18engman's picture
f18engman
Posts: 5
Joined: Feb 2007

AuntyP,
I was diagnosed with stage 4 base of the tongue squemous cell cancer in November of 2005. It was on the left side for me. I found the lump and went to Stanford for treatment. They did not operate because the tumor was wrapped around my artery. I had 3 treatments of chemo prior to starting radiation. During radiation I had 2 more stronger treatments of chemo. Today I'm cancer free (as far as I know). I finished treatment in January 06 and I've had 2 PET scans since. I'm waiting for the results of my last one. Everything has been going well for me. My tumor was the size of a ping pong ball when they diagnosed me and the size of a tennis ball when I started my first round of chemo 2 weeks later. If your cancer is like mine, I could not eat and was losing weight fast. My wife would mix Boost, a package of Scandi Shakes, a scoop of peanut butter and ice cream for a drink with about 1000 calories. That kept me going. I lost 55 pounds during my treatment but I could afford to lose it. If you are not overweight you may need a feeding tube. I consider my treatment a success. I pray yours will be also. If you need someone to talk to, please let me know. I had a great support system and I know that helped me pull through. Where are you going for treatment?

George42
Posts: 5
Joined: Jun 2007

Hi AuntyP. Just want to repeat what hipwr1 already stressed to you: get a feeding tube. They are life savers. Before my husband got his, we were worried to death. He could eat so little and became dehydrated. The oncology dr. stressed to us he should get one, while the radiation dr. and a surgeon thought it could wait. We thought he is strong otherwise, maybe he won't need it. We were wrong. Even if you are in good general health, which my husband was in very good health, the chemo and/or radiation (especially radiation targeted at the neck/throat) take away your appetite and make it EXTREMELY DIFFICULT to eat! You WILL lose weight with these treatments.

My husband was diagnosed with Squamous Cell Carcinoma, base of tongue, stage 4, with metastasis to the lymph nodes on both sides of the neck. He had surgery to remove the lymph nodes, but no surgery was performed on the primary site at the base of the tongue. The radiation treatments, forty total, took care of the tumor. It was shrinking throughout the treatments. About a week or so prior to radiation ending, the tumor was no longer visible. We were told there wasn't anything left of the tumor at the base of the tongue!
After the surgery, a bilateral neck dissection, there were two out of thirty-seven nodes removed that tested positive for microscopic cancer cells. That was the reason for the neck dissection, just in case chemo/radiation didn't take care of everything as far as microscopic cancer cells.

The best of luck to you AuntyP. Please post any questions you may have as you go through treatments. Lean on someone you are close to. Share your feelings with people. My husband was brave and dealt with all this so much better than I would have. He talked with everyone and was very open. I am much more private than he. I'm afraid I would have taken to my bed. Stay strong, have courage, find support.

One more piece of advice. Find docs you are comfortable with and get second opinions if you are not sure you agree with anything a dr. says. It is worth it for your peace of mind. Remember, they are only human beings, not gods. It is very important to feel secure with the dr. and to find one who treats you as an individual patient with individual needs. It makes the process so less stressful if you are comfortabe and can communicate easily with your drs.

Good luck,

George42's Wife

AuntyP's picture
AuntyP
Posts: 8
Joined: Aug 2007

f18engman and George's wife....thank you so much it does me so much good to read story's like yours.

I am almost ready to start my treatments i have my first pet scan on friday also getting my films done for the radiation meeting with my chemo Dr i will be having 35 radiation treatments with 3 lots of chemo 1 on day 1 1 on week 4 and another on the final week my chemo will take about 4 hours but the rad sessions will be about 15 mins, also i have booked my peg tube i am having it done wednesday wanted to get it fitted now while i feel well and im over weight i think that will help me out during all this.

i have a question they have asked me to consider these injections before each rad it's supposed to help try and save my saliva glands did any of you do this ? did it help?

thank you again for your replys they mean so much....Aunty

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

I think you are referring to Amifostine, also called Ethyol. From my brief experience it sounds like it works for some but not for most. So, you and your Docs will have to determine if it is right for you. In my case I am having rads mostly on one side and they say they will spare my Parotid gland right side completely. So, in my case they recommended against Amifostine saying it frequently causes nausea. My chemo Doc and my rad Doc both said that this drug works in a low percentage of cases. But again, the side-effects for you may be different if at all.

Trust your Docs, get the facts, decide what is best for you.

Take care, God Bless and be well.....JK

AuntyP's picture
AuntyP
Posts: 8
Joined: Aug 2007

Yes thats it sorry it would help if i put the drug name down...yeah i am having total mouth and throat radiation so i think that is why they want me to take it, i have talked it over with them we have decided to try it if i can handle the side effects great if not we cant say we didnt try...thank you so much for your reply

like you say i may get lucky..

will keep you in my prayers take care Aunty

f18engman's picture
f18engman
Posts: 5
Joined: Feb 2007

Sounds like my treatment. I think I had 33 rad but I had 3 chemos before rad and 2 during. I was too sick for the third chemo during rad. I was not offered the shot and I did lose my saliva and my taste buds, but they both are back to some degree. I still have a little trouble at night waking up with a dry mouth and I need a lot of water when I eat so even though they seem to be back they are not 100%. I still carry a bottle of water wherever I go. Good luck with the treatment and keep posting so we can see your progress. Keep your spirit up and NEVER give up.

AuntyP's picture
AuntyP
Posts: 8
Joined: Aug 2007

F18 hi there your story really has boosted my spirits i have to say now we are on the cusp of being ready im nervous, i have had to stop taking motrin because im having my peg tube fitted tuesday they gave me some tylanol with codine instead it works great on my mouth pain but im started having bad side effects today bad tummy nausia headache hot sweats ...i wanted to know if you can recomend anything did you atke anything?

Yeah i am down to have the three chemos during rad he said i will def have the first 2 but it will depend on how sick i am if i get the 3rd one or not, i guess thats commen for us...

thank you again for your time..Debz

f18engman's picture
f18engman
Posts: 5
Joined: Feb 2007

Debz, I was given morphine but I don't recommend it. I ended up at one point taking 14 meds a day. My wife had to make up a schedule because I couldn't take one within 2 hours of another one and not within an hour of eating and not..... it was very confussing. Glad she was there. When you start chemo they will probably give you nausia meds before treatment and probably a prescription for when you go home. Hopefully it will work better for you than it did for me. Keep positive. Your in my prayers. Did they fit you for a mask? I still have mine. :) It hangs in the corner of my office at home. What treatment center are you going to?
Don

AuntyP's picture
AuntyP
Posts: 8
Joined: Aug 2007

Hi Don sorry so long no write i was getting my ass kicked...LOL man oh man, i am one week down 6 to go i have loved these two days off and have actualy been able to eat, my peg tube was far more painful than i thought it was going to be i had expected discomfort and some pain but it's been hell at one point i sat on the bed crying i wanted it out (sad i know) still here i am sunday and its getting better, they gave me some liquid narcotic type drug to take after the peg but it made me spacy so i stopped taking it then the nausia kicked in so i had other things to worry about...LOL
i am going to westchester medical center for my treatments i do have my mask done one thing i hate is the drug they are giving me to try to save my mouth function makes me vomit and im so scared i will start to vomit while i have the mask on and no ones in the room they have strated exposing me longer when i do my rads and i have three blasts of it so all the while trying to pray i dont get sick...

thank you again for your replys...much appreciated...Debz

f18engman's picture
f18engman
Posts: 5
Joined: Feb 2007

Hey Debz, I thought you might be going through treatment. I know it's hard but keep the positive attitube and remember, the treatment will be over soon. I think of you often because I know what your going through. I think that sometimes the treatment is worst than the cancer. I had an appointment last Friday and they went over my PET scan with me. There's an area of concern but during the check-up they could not find anything. I'm going to keep track of the area myself and see if anything changes.

Westchester? New York? I'm in CA. I went, and still go, to Stanford for check-ups and treatment. I had one time that I went for rad and was so sick I thought the same thing you are thinking. I sat on the table for at least 5 minutes trying to get my mouth piece in without throwing up. I finally got it in but then laying there during treatment all I could think about was getting sick. I made it through. I'm sure you will too. I will keep you in my prayers. And I will keep checking to see how your doing. Don

f18engman's picture
f18engman
Posts: 5
Joined: Feb 2007

Debz, my email is f18engman@earthlink.net. You can email me there if you prefer.
Don

nwman7
Posts: 5
Joined: Aug 2007

Sweety, I WAS MISDIAGNOSED BACK IN 12/25/04 I TOO HAVE BASE OF THE TONGUE CANCER. TWO LYMPH NODES HOT. NECK DISECTION. I WAS TREATED AS IF I HAD NASOPHARYNOEGEAL CANCER. ANYWAY. I HAVE BEEN THROUGH IT ALL. RAD, SURG. PEG TUBES, CHEMO ETC. ONE THING YOU MUST DO. GET EVERY REPORT FOR YOURSELF.PATHOLOGIST REPORTS ARE THE MOST IMPORTANT AND CAT SCAN REPORTS. i HAVE BEEN OVER TREATED AND MY QUALITY OF LIFE HAS BEEN DAMAGED. NO SALIVA, HEARING IMPARED, CAN'T TOLERATE PEPPER, SALT ETC. HARD TO EAT. JUST REMEMBER YOU WILL BEAT THIS!!!!!!!!!!!! JUST DON'T LET THE DOCTORS PRACTICE ON YOU. GET JUST THE TREATMENT NEEDED NOT ONE THING EXTRA. QUALITY OF LIFE IS EVERYTHING TO SURVIVORS. MAY I SUGGEST A BOOK, PURPOSE DRIVEN LIFE. I AM BDBRD7@HOTMAIL.COM ILOVE ALL SURVIVORS AND YOU WILL SURVIVE. WRITE ANYTIME.

gemsj
Posts: 1
Joined: Sep 2007

hi, i am a nine year survior for tongue cancer, i went with radiation instead of surgery. I am living, some complications come up but be positive that you are still alive.

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