Hi Nicki,
I too had a tonsil cancer and had an experience very similar to Karens. I received IMRT and Cisplatin. The tumor completely vanished from the CT by the third week into Tx. I didn't have surgery. I lost over 60 lbs and didn't have a PEG. I also would not let them pull my teeth. I am doing fine today and and put back on about 35 lbs. I can eat just about anything I want. I was also 55 and very healthy going into Tx. Didn't drink, smoke or use drugs for many years.

The best way to stay in focus is to stay in the now. Do what is in front of you to be done. When the food tastes bad or it hurts too much to swallow - do it anyway. There are meds to help ease the pain. My serious problems didn't really start until just before the end of and post radiation. Stay hydrated - 2-3 liters a day.

I relied heavily on pain management and anti-anxiety meds. I also used anti-depressant meds post Tx.

What's Toms staging?

Welcome Nicki, I too was a tonsil cancer patient right side, never seriously sick before. Loss of weight is a big side effect, but with determination he can minimize the loss. I did not have a PEG tube, lost 30 pounds ending at 155. At 6'2" that was pretty thin. Get a blender for when the eating gets tough and use it for everything.

Take care and feel free to ask questions!

Nicki,

I feel like the odd man (person) out since I had the primary tumor at the base of my tongue, not my tonsils. I also had a PEG tube but for some reason I could not use it. When I tried, I usually puked even the liquid. The doctors had a lot of theories but never could make it work for me. I lost about 70 lbs and got down to 145 before I started gaining some back. It took about 8 months before I gained any and in three more months I gained a total of about 25 lbs. I really hope this is where it stays, too, by the way!

I am sorry you have had to find us but glad you have. The journey won't be easy but there are many that have traveled the road before you. Educate yourself and be sure and take care of yourself. You will be forced to lurk in the shadows, willing to leap over tall buildings, stop steaming locomotives, etc., on a moments notice. Find a phone booth for quick changes but be sure and schedule some time to unwind periodically. I would never have made it without my wife or at least I am so grateful I didn't have to try.

I will be praying for both of you and ask Him to provide the wisdom and the guidance to the medical team to provide the absolute best treatment possible.

Ed

Nicki-
I'm one of those tonsil cancer surviors, too. Had surgery then chemo and radiation. Lost about 45 pounds and would not have made it without the peg tube for nutrition. Gaining weight back afterwards didn't seem much of a problem as the radiation knocked out the thyroid gland which makes one hypothyroid and that makes you gain about 20 pounds! Don't worry about it now though, it doesn't hit you until about 1 year out!! My suggestion - have your husband eat all the favorites he loves now while he can! Things will taste differently after treatment. Plan on life on the tube for a while. It gets better about 4 months down the road. He can do it! - Kris

I think I love all of you already! I got home from work as quickly as I could today, and, as I was afraid, he hasn't been able to eat much. His stomach is distended and he feels too bloated to eat .... maybe its all the liquid he is drinking???
Gary, he's Stage IV; T1N2bM0. The treatment plan calls for Cisplatin 3 or 4 X followed by 2 weeks after each infusion of 1650 mg of Xeloda. The doctor said they may begin radiation after the second round of chemo....surgery to follow.
What anti-anxiety meds did you take? I think he's already depressed - he runs his own company, and he is the top sales producer, so he has his own inner stress that I can't help calm.
Mark, I love reading your survival score! That cheers me (and him) immensely. After seeing what some of you - like Minnie, for example - have gone through, I am thinking how 'lucky' we are!
Thanks, Ed, for the encouraging words on regaining weight...that is helpful.
I'm off to the druggist (again)!
God love you all. We'll be adding all of you to our daily prayers
Nicki

Nicki, I too own my own company and was the top sales producer. He NEEDS to reduce stress! there are ways to help and that might be beyond the scope of the OCF site. Actually there are several people here that were (and/or are) business owners. Feel free to have him e-mail me if he would like to discuss the business end of things.

Hi Nicki,
I took Zanax. Later on I was prescribed Prozac and Paxil as well, but that was more for depression.

I am confused about the Zeloda infusion. Zeloda is typically a oral form of chemotherapy that converts to F5U once in the body. It is supposed to be as effective as the infusion of 5FU. Cisplatin is an adjunct to the radiation and is typically prescribed in 3 week intervals with the first treatment being on the first day of radiation.

Like Mark and others here I have my own business, working out of my home. I was pretty much disabled for a year from the treatment side effects. Some have an easier time and some worse.

Good morning, all.
Gary, you are correct in that the Xeloda is being taken orally for 2 weeks after each cisplatin infusion. I don't know why they started chemo on its own in advance of the radiation...
I think I'll talk to the chemo nurse today about getting his a prescription for Zanax. I am taking that myself so that I can sleep at night....if I don't, I get only about 3 hours worth and then I am up and worrying. I also find that during the day I am tugging at any clothing near my neck....sympathetic anxiety, I guess. Somedays it makes me literally crazy and I rush home to take that magic pill!
Mark, I am going to show him these replies and I am encouraging him to get in touch with others who have gone through this. Thank goodness he has a strong team at the office - I think they'll keep the company healthy while he's not, but that 'control' element is hard to release, is it not?
WE are having a problem with constipation....the little pills aren't working yet and he's pretty miserable........
Hope all of you have a wonderful day - we already know it will be blessed!
Nicki

Nikki,
Welcome to the board. I am an oldie here, as you can tell by my member number. I don't post very often, but keep up with eveyone by reading. My husband's situation was very similar to your husbands, and we are 4 years post treatment and he is doing great. We go back to M D Anderson next week for our four year check up. He also was T1N2bMo, was 37 when diagnosed and had really never been sick. Found it first in his neck, then right tonsil. He had the original surgery that found it, then 7 weeks of radiation. He started out around 165 at 5'10", got down to about 118, and finally relented to having the feeding tube (he really did not want it!) After it was in we realized we should have gotten it much sooner. It was so easy to deal with and once his body was getting some nutrition, his healing began to increase.
Like the others, I say the best way to get through it is to take it day by day and try to remember that it is a temporary situation you are going through for hopefully a lifetime of cure.
My husband was on Zoloft for depression throughout treatment and for about 6 months post treatment.
I hope you will rely on your new friends you have made here. I remember how much it helped to come home at the end of the day and be able to relate to people that were going through what we were. To be able to find the answers to some of the many questions and the support of others, is just such a tremendous blessing. I don't know if Brian realizes the enormous effect he has had on so many people by starting the OCF.

Constipation was the most miserable part of the entire experience for me. I practically lived on the bathroom floor curled up in a fetal position -for months it seemed. There are prescription drugs that are more potent then the OTC ones. Get a consult with the nutritionist. Other steps to take are adding fiber to the diet (like metamucil), drinking lots of water 2-3 liters/day. The usual stuff - fruit, juices, prunes, etc. Avoid binding agents like cheese and rice.