Tonsil Cancer

victor53 said:

peg and port
get a a peg tube and a port not a pic why anyone would try to make it without a peg tube i cant understand. The more food and water you can get in you the better you feel. (period)

TIM_WWJD said:

Tonsil Cancer, Port & Peg
It has been awhile sinc eI have been here and I see we have a few new head & neck buddies. To update I started my treatment for tonsil cancer on 02/02/09 with a three cycle chemo of Cisplatin and Tax??. This was in lew of surgery to remove the tumor. It was a rough nine weeks but the chemo shrunk the tumor to the point it did not show in the CT scan in March. God was very good to me and the prayers of hundreds didn't hurt either. I started a combination of daily radiation and weekly chemo of Carboplatin (much less effects than the firt) on 04/28/09. Anyway I am halfway through my 30 radiation treatments and things are looking good so far. I am writing this to those who are just starting out. First thing is you are doing right by getting all the information you can but be carefull not to get overloaded.
Second is everyone will react differently even to the same treatment, ll you can do is get yourself prepared and be ready to fight, you must have a good attitude as this is half the battle. You need nutrition and fluids so do not hesitate with the PEG tube and it was simple to get put in I had both my PEG & PORT done on the same day. I used it one full week during the first chemo because of mouth sores and I am using it know because my throat is sore from radiation and I am hoping that healing will come faster if i don't irritate it more than needed. Remeber to keep the swolling muscles working even if you are on the PEG so they will work later. Food and fluids (Gatoraide) are the key, I feel much better when I take in 1500 CAL or more and 2 liters of fluid each day. I did have trouble with medicines, I crushed them and tried to mix them with my Gatoride or water but they don't disolve well. I found that I can mix them with apple sauce and add water to make a slurry and they seem to transfer much better. Remeber to check with your pharmisist on which pills can be crushed. Wow I am writing a novel. I hope this is helpful and it is hard work and some days are dark but the option is much worse.
Tim

Fireman said:

Hi Tim - I was stage 4 when
Hi Tim - I was stage 4 when I found out. Never smoked or drank. They removed my tonsils and I started chemo 2 weeks after. Other than being tired and losing hair it was pretty easy for me. No nausea. I had chemo once a week for 3 months. I usually had it Thursday and carried a pump with me injecting Chemo over the weekend. I worked Monday Tuesday and Wednesday and took the rest of the week off. I was a jock, ex footballer and was in pretty good shape. I added 25 pounds before radiation started and went up to 225 lbs. No way was I going to have a PEG tube. I ate fine after my tonsillectomy and through Chemo. Radition was a different monster for me. A breeze to start then my saliva started acting up. My dentist put me on Salagen to keep the glands pumping which gave me hot flashes. Also had to use a floride treatment everyday for 5 minutes and so far 7 months post radiation, my teeth and gums are fine. They were good to start with and needed no work. They are sensitive to extreme cold and heat but work fine. Radiation burns the inside of your throat. If you can imagine scraping your knee on asphalt, then the white and red fluids that appear to aid healing, that's what happens in your throat. That ooze comes in the form of Phlegm and it sticks around for a while. For me it was 5 months before I could stop constantly spitting it up. I cleaned and carried around my Ensure bottles to use as a spitune. I had to spit all night also as you should not swallow it. Still spitting but much less and don't have to carry the bottle anymore. I fought the Peg Tube but I am a registered nurse and it was clear that I was not eating or drinking. Water begin to burn my throat and I went from 225lbs to 175lbs. I was glad to get the Peg tube and had to be put in the hospital to rehydrate myself for a couple of days. I should have known better but wanted to tough it out. I never felt the PEG tube after the procedure. I was not painful at all. I was asleep and had I not known that's why I was there I would not have felt a thing. I finished radiation in July of 2008. I still have some of the effects of it with changes in eating, can't open my mouth as wide and can't swallow as well. I began eating on Thanksgiving. Slow, small bites, soft foods, and don't eat and talk at the same time. I still gag and choke occasionally. That was another thing with radiation, my gag reflex intensified and I threw up just from brushing my teeth. The floride treatments I stopped for the same reason. Just the doctor looking in my mouth made me gag. I still have my PEG tube but do not use it. They will take it out next month if my PET Scan is clear. I am much stronger now even though I'm only at 180lbs. I look good at this weight. Eating is easier and spitting at night is way down. It affects people around you more than you realize even though you are the one going through it all. Especially if they've always know you as this healthy jock who never gets sick, and are the bread winner. It does get better. Just don't have the fast food want it now mentality. This will take time, money and effort on your part. If you are a person who gives up easily, get support right away. I understand why some people give up. If you are positive by nature, smile a lot and thank whatever you believe in that you will be able to someday help someone else get through this. Rest a lot but don't let your muscles atrophy. Keep seeking advise as issues come up. Take care and we can talk about our experiences when we are both done with this.