Hi, we are Mike and Ginny. Mike just completed his treatments 09/28/06 for base of tongue SSC stage 3. We were shocked when the intitial diagnosis was made. Mike did well through the treatments and with the help of the treatment center counselor and this forum we have coped as well as possible. The last few weeks have consisted of follow ups with the RO,MO, and ENT. This coming Tuesday Mike will have a procedure to open his throat to assist with swallowing. He is still using the feeding tube primarily. Well, just wanted to introduce ourselves and will look forward to talking and sharing with you.

Welcome aboard Mike and Ginny!

I am somewhat new at all of this myself and do a lot more reading on the site than posting. I have found the site to be the best tool around.

I was also diagnosed with BOT stage 3/4 back around the end of April and finished with treatment in mid-July at Emory Univ. Winship Cancer Center here in Atlanta. I was given a clean bill last month following post treatment follow-up procedures last month. I had my first scan around end of August but the Radiologist was unable to decipher a clean view. My ENT then did a direct laryngoscopy with BOT biopsy which was clean. My ENT has advised that with BOT the first year following treatment is the most crucial. 80 to 90% of all recurrence cases occur within that first year and it's most important to keep all appointments and show for all scheduled scans.

Good luck and keep spirits high. I am finding the loss of taste buds to be the big downer of all since this started for me. I'm told that on average it takes 2 to 10 months following treatment for the buds to return.

Bill D.

Mike and Ginny - Welcome to OCF. Congratulations on finishing your treatment. Well done! Now you can start that long, slow rebuild process - finding your 'new normal'.

Mike, push hard on getting the swallowing going again. Slow and steady, no heroics, but no days off either. The battle isn't over yet for you. You gotta still push the calories and fluids.

You two can really make a big contribution to this site. I hope you will share your experiences with us and reach out to others here too. You are part of the OCF family now. You can help us battle this monster. We win this battle one household at a time. I just got a clean scan on my three year anniversary out of treatment. You are on your way too. Be strong, Tom J

Hello Mike and Ginny,

I am just 9 months from last treatment. So far I am clear. I look forward to my one year celebration, but for now I just try and take one problem at a time as I continue to heal.

You will have good days and bad. I just had my swallow test a few weeks ago. Then I went in and had the esophagus stretch. (others have had done) I had scare tissue that was from treatment and it was causing me to have blocking problems. This did not start up until I was about 5 months out. I am a little sore right now,so I am back to liquids & soft things for now.

You will run into other small problems as you go along. This is a great site to get help with them. We are all here if you need us. Just remember it take time for all these things to heal. I think it is Gary that said "A month for every week of radiation" and it is true! It was at 3 months that I started to see some good changes.

Welcome and hang in there. You are through the worst of it.
Take care,
Diane

Hi Mike and Ginny,
I am in Ohio as well - welcome and glad you successfully completed your treatment. This forum has been a great resource for me and my family. My father is a retired truck driver, Mike, do you own your own rig or drive for someone else?
My Dad just had a PET scan 2 weeks ago and all clean. He finished treatments May, 2006. Welcome again and keep us posted on your progress.
Kim

Thank you all, for your welcoming replies and encouragement. Through all the weeks of treatment and using this site's resources we have experienced what seems like year's worth of time crammed into a few weeks.
Currently, we're apprehensive about a scheduled throat dilation 10/31. The ENT set this procedure up after hearing Mike's compaints of not being able to swallow well enough to even begin thinking of getting off the feeding tube. He makes himself try to eat everyday just to keep the swallowing muscles working.
SOMETIMES HE CHOKES ON THE FOOD! He starts gagging, choking and his throat makes gurgling noises. His eyes get all terrified looking and then he hacks up the piece of food. A few weeks ago this would send him into a panic and he would be too scared to try swallowing again for a day or so. He has since taught himself to stay calm and expel the "balled up and stuck piece of food". Of course, I am still terrified of this. What if he couldn't get it expelled? Could the Heimlich maneuver work with a Peg tube in place?
He still takes about 2,000 calories a day through the tube.
Hopefully this throat dilation will help.
The ENT could not feel or detect with a scope any evidence of remaining primary or nodule involvement. He spoke of a "selective neck dissection" as the next possible procedure to discuss. We threw a million questions at him as we were not prepared to consider this. After some discussion, it was clear we were overwhelmed and not ready to decide on this. The Doctor then proposed the throat dilation and while he was in there, he will do some "looking around". We agreed.
Since then we have been studying up on the pros and cons of monitering patient, using PET, and selective neck dissection.
The RO agrees with the ENT and tomorrow we have a follow up with the MO.

Hi Ginny and Mike,
Glad to have you with us. Yes the Heimlich will work with a PEG tube but I'm hoping you won't need to use it. The first time Jack choked and hacked up the stuck food was aweful for us as well, but then he learned to manage and his swallowing has improved dramatically in the last few months. He did not need the dilation so I can't speak to that but if you do a search on this forum you'll find posts from other members who have been through the procedure.
Good luck on the 31st.
Regards JoAnne

As you can see I finished a very similar Tx 8/28/06 so I am 1 month ahead of Mike. If you have ANY questions please ask. I did not have a tube. I have regained appx 1/2 of my weight loss and eat anything I want. I still don't taste too well so I also drink 2 to 3 cans of Carnation VHC a day. I have recently scaled back to 2300 cals a day because my dear mother in law told me last week that I have a belly!!! I was doing 2800 cals a day to put 2 lbs a week back on and I guess it WORKED !! I have no swallowing pain or problems so I never had my throat messed with. I have permanent high FQ hearing loss and still have dry mouth. I go tomorrow to see if my first post TX Cat is clear.

When Mike was diagnosed, along with the shock of having cancer, there was the additional shock of having a cancer we never heard of. Base of Tongue? What the heck was that? No one ever heard of that. Most of these Oropharynx cancers we never heard of. It is surprising to see how many people do have this! Equally surprising to find such alarming increases in cases involving younger and non-smoking individuals. The first question the ENT asked Mike was "how much do you smoke and drink?" Well, he does'nt smoke or drink. I went into a fury of anger over that question. That anger motivated me to research and find this site. I made the HPV connection but dropped the subject quickly. It really doesn't matter how you we got here, we're all here and were all dealing with it together.

I quit smoking over 30 yrs ago and am/was a casual drinker, yet they first made it sound to me that smoking was probably the cause. Then they said well maybe HPV but when my wife of 16 yrs heard that HPV was a ST desease she looked very concerned to say the least. I have been faithful during our marriage and I know she has to but I felt like I had just been thrown under the bus. Since then we have learned that one can carry HPV for decades so I'm out of the doghouse for now.

Tomorrow when I see 3 of my team doctors I plan on asking if Moffitt tests for HPV. Other posts have indicated that knowing that HPV may have caused the cancer would not change the TX, but it does improve your chances of not having a reoccurrance. I'm a CPA, I look for all the loopholes!!