joined

corvettegirl

I am a eight year surviour of HNC. Just found this site, I am researching common long term side effects of erbutux, cystplatin and IMRT radiation.

corvettegirl

surviving is awesome but what about me

I am a survivour!!! Eight years that in itself is everything. Just dont expect me to run marathons or babysit your kids. I didn't do it before and I don't want to do it now, I am not superior because I survived cancer, not super human. I worked in a Hair Salon for thirty plus years breathing chemicals, I knew they must be toxic because I suffered from respiratory problems constantly. Loved my job and just kept going until I found out I had stage IV squamous cell carcinoma, tumor was the size of a orange had been there for about a year, had been to the dr numerous times but nothing, diagnosed with Mono, I diagnosed myself on the internet typed in symptoms and there it was, next step was ear nose throat specialist, biopsy and trip to a teaching hospital in Albq. After thirty seven IMRT treatments and twelve rounds of chemo no more cancer. The best thing they did is put in a feeding tube before any type of treatment. With problems swallowing eating is my main problem. Sometimes I wish I could have kept the feeding tube. I did have alot of skin problems due to IMRT. The tech told me every treatment was like three weeks exposure to the sun. My skin looks like dried mud from my nose down not being vain just truthful. I would like to find something to help that area look like the rest of my face but don't know what that might be. Any suggestions? Have even considered plastic surgery. I know this may not seem like a problem for some of you and I do have alot of other issues like hearing loss, tinnutis, eye and dental problems, no appetite, pulmonary embolisms, hypothyroidism etc etc. you don't usually come away from that much chemo and radiation without problems. Thankful to be here! 

wmc

Welcome to H&N group

Welcome to the group. Sorry I can't help, as I only had surgery no chemo or radition. 

Like the name tho. I had a all original '75 Stingray and matching numbers. Did a lot of car shows and judge them for about five years. My Son learned to drive in the Vette and took has driving test in it. I think the instructor looked a little nervous. We rebuilt the engen to over about 365hp but they said if I had it tuned on the dino we would get over 450hp. Lost of fun to drive, but the rear did like to come around some. Several have had erbrutux and I think they had much less effects with it. Hope they can help with some answere for you.

Bill

SQLNOLE

Welcome
Welcome, CorvetteGirl,

I am a newbie, so don't know about such things, but I just wanted to say hey!

supagama

corvettegirl said:

surviving is awesome but what about me

I am a survivour!!! Eight years that in itself is everything. Just dont expect me to run marathons or babysit your kids. I didn't do it before and I don't want to do it now, I am not superior because I survived cancer, not super human. I worked in a Hair Salon for thirty plus years breathing chemicals, I knew they must be toxic because I suffered from respiratory problems constantly. Loved my job and just kept going until I found out I had stage IV squamous cell carcinoma, tumor was the size of a orange had been there for about a year, had been to the dr numerous times but nothing, diagnosed with Mono, I diagnosed myself on the internet typed in symptoms and there it was, next step was ear nose throat specialist, biopsy and trip to a teaching hospital in Albq. After thirty seven IMRT treatments and twelve rounds of chemo no more cancer. The best thing they did is put in a feeding tube before any type of treatment. With problems swallowing eating is my main problem. Sometimes I wish I could have kept the feeding tube. I did have alot of skin problems due to IMRT. The tech told me every treatment was like three weeks exposure to the sun. My skin looks like dried mud from my nose down not being vain just truthful. I would like to find something to help that area look like the rest of my face but don't know what that might be. Any suggestions? Have even considered plastic surgery. I know this may not seem like a problem for some of you and I do have alot of other issues like hearing loss, tinnutis, eye and dental problems, no appetite, pulmonary embolisms, hypothyroidism etc etc. you don't usually come away from that much chemo and radiation without problems. Thankful to be here! 

8 years? wtg

congratulations on 8 years!  I have had 2 clean NED s since just before Cristmas, making it about 8 months for me since the end of rad/chemo..no surgery.  My soft palate is just a train wreck now from the radiation and I was avoiding a PEG for months....until starvation reared it ugly head.  Needless to say, I got the tube and it fell out within 3 weeks!  I couldn't believe my crappy luck.  I had a new one installed yesterday so fingers crossed. What I would like to say to other is "Do not avoid the PEG tube!"  Being a stubborn old fool nearly cost me all the progress I had made, including my life.  I know that having it put in wasn't a picnic and having it fall out was something they all said was abnormal, but I know that getting 2000 or more calories a day will be invaluable in my recovery makes it all worth it.  Are you back to eating normally now or do you have an arptruator? (not sure of spelling)?  I no longer have teeth and can not wear my dentures because I can barely open my mouth.  I would love to hear from someone who has overcome the eating thing and resumed a semi-normal eating pattern.  I would just love to have something like a big old cheeseburger...and heck yes I want fries with that!  congrats again and take care everyone!

Barbaraek

corvettegirl said:

surviving is awesome but what about me

I am a survivour!!! Eight years that in itself is everything. Just dont expect me to run marathons or babysit your kids. I didn't do it before and I don't want to do it now, I am not superior because I survived cancer, not super human. I worked in a Hair Salon for thirty plus years breathing chemicals, I knew they must be toxic because I suffered from respiratory problems constantly. Loved my job and just kept going until I found out I had stage IV squamous cell carcinoma, tumor was the size of a orange had been there for about a year, had been to the dr numerous times but nothing, diagnosed with Mono, I diagnosed myself on the internet typed in symptoms and there it was, next step was ear nose throat specialist, biopsy and trip to a teaching hospital in Albq. After thirty seven IMRT treatments and twelve rounds of chemo no more cancer. The best thing they did is put in a feeding tube before any type of treatment. With problems swallowing eating is my main problem. Sometimes I wish I could have kept the feeding tube. I did have alot of skin problems due to IMRT. The tech told me every treatment was like three weeks exposure to the sun. My skin looks like dried mud from my nose down not being vain just truthful. I would like to find something to help that area look like the rest of my face but don't know what that might be. Any suggestions? Have even considered plastic surgery. I know this may not seem like a problem for some of you and I do have alot of other issues like hearing loss, tinnutis, eye and dental problems, no appetite, pulmonary embolisms, hypothyroidism etc etc. you don't usually come away from that much chemo and radiation without problems. Thankful to be here! 

8 is great!

It's always good to see survivor stories on the board here. It gives us hope and encouragement. I don't think any of us come through treatment unscathed...there are always some side effects, but you sound like you have the right perspective on them. Here's to another 8 years for you...and then some!

Barbara

Kent Cass

corvettegirl said:

surviving is awesome but what about me

I am a survivour!!! Eight years that in itself is everything. Just dont expect me to run marathons or babysit your kids. I didn't do it before and I don't want to do it now, I am not superior because I survived cancer, not super human. I worked in a Hair Salon for thirty plus years breathing chemicals, I knew they must be toxic because I suffered from respiratory problems constantly. Loved my job and just kept going until I found out I had stage IV squamous cell carcinoma, tumor was the size of a orange had been there for about a year, had been to the dr numerous times but nothing, diagnosed with Mono, I diagnosed myself on the internet typed in symptoms and there it was, next step was ear nose throat specialist, biopsy and trip to a teaching hospital in Albq. After thirty seven IMRT treatments and twelve rounds of chemo no more cancer. The best thing they did is put in a feeding tube before any type of treatment. With problems swallowing eating is my main problem. Sometimes I wish I could have kept the feeding tube. I did have alot of skin problems due to IMRT. The tech told me every treatment was like three weeks exposure to the sun. My skin looks like dried mud from my nose down not being vain just truthful. I would like to find something to help that area look like the rest of my face but don't know what that might be. Any suggestions? Have even considered plastic surgery. I know this may not seem like a problem for some of you and I do have alot of other issues like hearing loss, tinnutis, eye and dental problems, no appetite, pulmonary embolisms, hypothyroidism etc etc. you don't usually come away from that much chemo and radiation without problems. Thankful to be here!