Unkown Survivors!

fisrpotpe said:

plus
thought i would share, i had standard radiation, three rounds of chemo that was 24 hours per day for 5 days in the hospital every three week at the same time as my 38 radiation treatments. waited 9 weeks and had surgery to remove what was left wrapped around my carotid.

that was 1993, hope that helps you more as you wait for for your scope and results. congrats on your 22 month survivorship.

john

fisrpotpe said:

plus
thought i would share, i had standard radiation, three rounds of chemo that was 24 hours per day for 5 days in the hospital every three week at the same time as my 38 radiation treatments. waited 9 weeks and had surgery to remove what was left wrapped around my carotid.

that was 1993, hope that helps you more as you wait for for your scope and results. congrats on your 22 month survivorship.

john

mls351w said:

survivor
Did not drink or smoke. Developed stage 3-4 squamous cell carcinoma on base of tongue in late 2005. Had 2 wisdom teeth removed. Started treatment May 2006. 2 weeks of 24hr chemo and 40 radiation treatments. Surgery to remove 5 lymphnodes in November. Middle one was cancerous.
Last November was 5 years. Now getting head/throat/chest/lower abdomen CT scans and exam once a year. Go to specialized dentist 3 times a year.
Absolutely no side effects other than slightly dry mouth in winter at night. No problems with taste(in fact I think food tastes better). Side of neck has no feeling due to nerves cut during surgery. As my rad onchologist says, I am the poster child for this affliction. No teeth issues, but before treatment started, I went on a strict dental hygiene process. I brush, use a tongue brush, rinse with mouth wash(non alcholic),and floss after EVERY meal, and use flouride trays each night. I use to floss twice a year (when getting my teeth cleaned). I have followed this procedure and have had no tooth/gum decay or related issues. In fact my teeth are in better shape than before treatment.
Yes, only the bad stories seem to get told and you hear little about the sucsessful ones.
I count my blessings because I know alot of patients that have never recovered close to the extent that I have. I will be 59 years old in May.

mls351w said:

Mrs. Sarge
You are going to go through a lot of trials. But you have to stay positive. First, make sure someone goes with you Wednesday. There is so much info thrown at you that you cannot retain all of it. Luckily, my wife could go with me on every trip I made for pre-treatment and all treatment sessions. I wasn't in a very good frame of mind, and things my rad onc said went in one ear and out the other. But my wife, bless her, caught it all.
The injections were Amifostine. Very expensive, but luckily my insurance paid for it. They were $1500.00 per injection. I took a pill 30 minutes before the injection to keep me from becoming nauseous and the injection(in the stomach with a very short needle)30 minutes before the radiation. It seemed to work beyond all expectations as I have normal saliva functions. I had always drooled at night on my pillow and now I am at a "normal" level.
I went to a dentist before treatment started and he removed my last 2 wisdom teeth. I had been told that if you ever have to have an extraction, it may cause serious issues. The socket might not ever heal and the jaw can split and break. This is due to the radiation. So, needless to say, I followed all dental recommendations with great zeal. I started my dental hygiene before treatment started. After every meal I brushed, brushed my tongue(very important), used mouthwash, flossed, and at night used flouride carriers. I still perform this procedure after 5 years.
I was bald before chemo, but I did not lose any of my hair. It did go from gray to gray and black, so it is darker now than before.
There are people not as fortunate as I, but I feel that success stories are out there, you just can't find them as easily as the bad. You will get through this. I had so much support from family and friends and people from all over that didn't even know me.
Good luck and best wishes. Let me know if I can help you in any way.

mls351w said:

Hair loss
I forgot to mention that I started with a full beard. By the time treatment was over, I looked like Col. Sanders of KFC. Yeah, all I have to do now is shave my cheeks and just under my chin. No hair on my neck. Don't even use shaving cream. I guess my Amifostine injections were higher because it was a new procedure. My rad onc said it was a new process which had shown some success. She said they "Are a little expensive" so she checked with my insurance carrier first. And you're right, my nurse was always looking for a new area for the injection. I looked like I had the measles on my belly. I took the pill as a precaution. I definitely did not want to be sick while I was under the mask. Just curious, did you keep yours. I keep mine in a room in the garage. I sometimes go into the room and it stares at me like it is saying "where you been, we were so close at one time?" Just kidding, just kidding.
Well, it hasn't tried to talk to me.....yet! LOL

longtermsurvivor said:

If you don't require chemotherapy
you have no need for a medical oncologist. These doctors are valuable for what they do, but they are a fifth wheel if your treatment doesn't directly involve them. Your ENT and the radiation oncologist are really sufficient under the current circumstances. Now, if you require radical surgery on down the road, or any of the chemotherapies that those of us with more advanced disease need, that changes things.

Pat

mls351w said:

Hair loss
I forgot to mention that I started with a full beard. By the time treatment was over, I looked like Col. Sanders of KFC. Yeah, all I have to do now is shave my cheeks and just under my chin. No hair on my neck. Don't even use shaving cream. I guess my Amifostine injections were higher because it was a new procedure. My rad onc said it was a new process which had shown some success. She said they "Are a little expensive" so she checked with my insurance carrier first. And you're right, my nurse was always looking for a new area for the injection. I looked like I had the measles on my belly. I took the pill as a precaution. I definitely did not want to be sick while I was under the mask. Just curious, did you keep yours. I keep mine in a room in the garage. I sometimes go into the room and it stares at me like it is saying "where you been, we were so close at one time?" Just kidding, just kidding.
Well, it hasn't tried to talk to me.....yet! LOL