Getting ready to start treatment in a week for squamos cell carcinoma (right tonsil) and lymph node involvement t2 n2b same side. I'm just letting everyone know that I'll be checking in from time to time. Treatment will take place at the Cleveland Clinic, radiation therapy for 7.5 weeks and maybe chemo 1st week and 4th week, not sure weather to do the chemo yet. Possible neck surgery salvage after.

I'm fairly well informed but learning more every day and there is plenty to learn...

Welcome Indy,

Please do check in from time to time. Seems from reading your post you have looked around the message board a bit. Hope you have time to look at the main site. There is a wealth of information there also.

As you go through treatment and have any questions, please ask. Usually someone here has a suggestion or an answer they were given by their doctors.

There are many here that had the chemo with radiation and are glad they did. The belief is that it will boost the radiation. And most people want to fight with everything possible.

Wish you luck and please do keep us posted.

Take care,
Dinah

Hi Indy,
I had same problem. The chemo will give you as much as 10% better survival odds. It does make things a little rougher but you can get through it. It is a radiation enhancing type of chemo. It is not supposed to have the same systemic toxicity of more conventional chemotherapies. I am over a year now post Tx and no salvage surgery has been required so far.

Don't automatically let them convince you to pull your teeth either! Many of us here have ALL of our teeth. We will be happy to enlighten you as to the pros and cons of this.

So many decisions - so little time. Glad you found us.

Thanks Everyone for the welcome, I've already had the teeth out last week. Only had 17 left and many had caps that would have needed work so out they came...I won't miss those teeth, I begged the dentest to pull them years ago.

Hello Indy,

It seems we have plenty in common. Right side tonsil etc. keep us posted and stop back if you need help or support.

Take care

Hello Indy

I had similar cancer on my right side and am now doing well nearly one year after completing radiation. I have found this site inspiring and sooo helpful.

Wishing you the best for your treatment from Helen, with love.

Greetings Indy:
The word CANCER instills fear in all. But with understanding and information the fear and anxiety become less a problem. Most Radiation Oncologists agree that chemo in conjunction with radiation treatments is a good approach and offers additional chemical lanes that aid in reducing the tumor/tumors.
I have currenly had three chemo treatments and as yet virtually no side effetcs. They give you premeds prior to receiving the chemo that greatly reduce side effects. Plus oral medication for three days afterward as a safeguard.
Darrell

Please note that studies show that specifically, radiation-enhancing chemotherapy is what has been show to be effective. Given at the same time as the radiotherapy it makes the cancer cells more susceptible to the effects of the radiation. Chemotherapy as most people think of it, as a disease killer used on it's own, when it comes to oral cancers is used in late stage disease where distant mets also need treatment or for palliative care. It is seldom considered as a first line therapeutic for the treatment of oral cancers on its own.

Yes the chemo thing is heavy on my mind, I didn't realize it was different from standard chemo (haven't been able to confer with the chemo doc yet because he's been out of town) it's the only big decision I have left to make and time is getting short. After reading all the possible side effects, longer recovery time, and wondering what could happen if I were to become sick with something else when my imune system is down I'm extremely hesitant. But I'm sure I'll reconsider before judgment day.

And what about Amifostine...no one has mentioned it's use to me yet at the hospital. Why? If it works shouldn't they be asking me about it?

Hi Indy,
I was not able to get Amifostine locally either. I was told that it is administered by IV before each treatment and the Radiation Department I went to was not able (read: willing) to make the commitment to provide that. I would have had to travel 180 miles to Minneapolis daily or move there for the duration of treatments. I chose not to do that. With hind sight I would have at least spent more time looking into that option.

What I would really like to hear is that people that got their treatments with Amifostine really have more salivia after XRT (regular) radiation?

At one year post treatment, my husband is pretty disappointed with the results of the Amifostine. It made radiation quite a bit harder to get through as he became quite sick from it - and now he doesn't see how he could have much LESS saliva. He was very stubborn with the Amifostine - refusing to skip any doses of it, even when the radiation nurses were almost begging him to. However, doctors tell him that one year is too soon to tell - that he could still regain some salivary function.

But everybody is different and I understand others have had good results with the Amifostine.

Anita

Hi, My husband had Tonsil cancer and 3 positive nodes, neck dissection first then 35 rad treatments with 3 chemo treatments concurrent. He tried the amifostine the first time and it made him so sick that was the end of that, even with the drugs to help him not feel sick. His Dr said he was dealing with enough to have to be sick from the amifostine too. His blood count did not get any lower with the chemo, so no infections etc, they didn't seem to think it would happen anyways. We were told by his chemo Doc and radiation dr that this was the way they prefer to do it, chemo helps the rad treatments. Plus my husband was going to go at this with all ammunition they gave him. He just had his 2 year 8 month check up and he is doing great. (knock on wood)!!
Good Luck Sherrie

I had all of my chemo treatments BEFORE I ever started the raditation. In my case the understanding was to prevent distant mets. The fact that it shrank my tumors was an added bonus and a good predictor of the effectiveness of the raditation.

I had amifostine as part of my treatment plan. It was administired via two subcutaneous injections within a short period of time just before the radiation treatment. If I hadn't asked for it, they never would have mentioned it to me. Why? I'm not so sure, but I think the jury is still out regarding the overall efficacy of it. In my case, I only missed 2 out of 30 injections as a result of low blood pressure. Every day prior to each injection they would question me about how much water I had consumed and whether I had taken my anti-nausea medication. Then they would take my blood pressure. If it was too low, no amifostine.

It's too early to tell how effective the amifostine was. I'm not 100% dry, but I don't have as much syliva as before treatment and I usually keep a bottle of water handy. In going out to eat, I always make sure my drink is full prior to eating and I will stop eating if I'm empty and waiting on a refill.

Am I glad I took the injections? Yes, in that I wanted every tool available to help mitigate the side effects of the radition treatment. The injections hurt -- felt like a charley-horse in each arm. And there was always some nausea, but I'm pretty sure it was "white coat syndrom" because I was always nauseated before the injections. One of the good things about taking the injections was it put me on the clock with regard to the radiation machine. They only had a short time window in which to treat me, which kept the waiting in line to a minimum. Even if the stuff doesn't work, at least I took my best shot.

-Brett

I tried the amifostine (Ethyol) and about four weeks into it I got violently ill about one hour after the radiation and my fever would spike to 104 in about 15 minutes. I ended up in the hospital and they tried to give me the Ethyol in a more controlled environment and determined I had somehow developed some type of allergic reaction to it. I went through about every anti-naseau drug know to man and still would vomit exactly one hour after radiation. I am probably in trouble for this but a friend gave me some pot and said try this when you feel naseaus and it kept me from vomitting instantly. I still got the fever, though and ultimately stopped the injections (and the pot). My fear with the pot was that I was a chronic pothead for 25-30 years and feared this brought on the cancer. I tried Marinol (pot pills) but it didn't help, just made me sleep more.

I smoked pot when I had hepatitus and it was the only thing that worked - probably saved my life.
Ironically, I also feel it was the pot that could have caused my cancer. Talk about "risk/benefit"!

Well, they have the active chemical in pot in pill form now don`t they ? I have a friend who`s only help was pot when she was undergoing treatment for Hodgkin`s disease........being a child of the 60`s I`m well aware of the benefits and risks of pot. hate to admit it, but I smoked it for 20 yrs. After living through the past five years with oral cancer, I sure know what it can do..........I check my mouth, with fear. .Dee

Well I was a child of the 60's and never smoked pot and it's a bit late to start now...Did I miss anything GOOD.. But don't now make give up my red wine.. This keeps the fear at bay...
Helen

Whew! There was a knock on the door after my post and it made my heart beat a little faster. I'm glad to hear I wasn't the only one. And yes, Dee, the pill form is called Marinol and it somewhat helps the appetite and takes the edge off but the true pleasant feeling of the real thing is gone. I can't tell if it helped with naseau either.
Ed

My husband tolerated the amifostine (Ethyol) very well...it was administered subcutaneously 15 minutes before radiation. He was to drink 16-32 ounces of water and take his anti-nausea medication 1 1/2 to 2 hours before the shot.

He has plenty of saliva and we feel (doctor, too) that it helped with some of the side affects of the radiation therapy. He just finished 8 weeks....maxed out.

Medicare will not pay for it unless you are post-op. It's about 760$ per shot.

$760...sorry about that.

I am so glad your husband kept his saliva! It is wonderful to hear the positive side of things through treatment. I hope his recovery goes even better.

Ed

Me too! I pray for the best to all of us....caregivers as well! Thanks for the kind words.

Checking In ! Well it's been four weeks now and I wanted to stop by and fill in some blanks. I just finnished the second and last course of Chemo and all went very well. I basically brainwashed myself and wouldn't let the side effects get to me although it's not over yet. I have a shoebox of meds that I'm taking to help things along but I'm fine. The radiation is kicking in quite well now and I've got the painted field lines on my neck both sides for the next week or so. I can't taste much and swollowing is becoming a problem but with only 3.5 weeks left I'm deffinatly a hold out for the feeding tube. The Doctors (Some of the very best at this) are telling me that I'm way ahead of most people with this because of the positive attitude and determination I poses. Don't get me wrong...I know that cancer does not discriminate and I know I could very well lose this battle but....I'm not planning on it any time soon. There are to many people depending on me and much to much life left to live to let this get to me...I will forge ahead!

hey there Indy,

glad to hear that you are doing well, keep the spirits up. the shoebox of drugs should dwindle with time.

from your profile i see that you like to canoe and kayak.. me too. it's taken some time, but both of those are back in my life big time.. got out today in a kayak given to me by a friend.. it's a 30 yr old olympic style and it is fun to be in a tippy fast boat. tomorrow i plan to go out in a canoe with my wife to see flowers and birds.

so go with the flow and best wishes to you for a speedy complete recovery..

cheers,
larryb

Yes Larry, I have seven boats, three kayaks and four canoes...all but one are solo. I'm very active on some of the paddling message boards. Paddling is a great way to escape the worlds problems if only for a short while. I'm glad to hear from you and maybe some day I'll get to paddle with you. we have some pretty sizeable gatherings over at paddling.net

Hi Indy, glad to hear things are going so well for you! In no time, you will have no shoebox. I had a rougher time with the chemo than the radiation. All my life my stomach has been a problem and the chemo kept me on all fours, close to the throne, if you know what I mean. It has been over so long that I don't remember what it was like until my wife reminds me. Heck, I don't remember much from that few weeks and I was even working through most of it.

Ed

Indy,
It sounds like you are doing well to get through IMRT and chemotherapy. It is a tough go, my thoughts and prayers are with you. My father was also treated at Cleveland Clinic for SCC stage 2~3, from 12/29/03 - 2/18/04, by Dr. Saxton, Dr. Fleming, and Dr. Wood. My Dad had a line of cancer from his lip to his ear, he has had leukoplakia for 10-15 years. There was lymph node involvement, 2 nodes I believe. He was quite ill through IMRT, received no chemotherapy, or amifostine. He had 33 IMRT treatments, 3 Boost treatments, and 5 days of brachytherapy. He found that if he mixed baby food cereal with the nutritional drinks that he wouldn't be so sick to his stomach. His stomach was more sick from the morphine patch than from the radiation., but the excessive mucous had a lot to do with that too. He has been finished with treatments since Feb. 18th, he is happy to report that at least 60% of his ability to taste is back. He works everyday, and doesn't seem exhausted as I feared. He had a lot of saliva during treatment, and has only lost it within the last month or so, 2 months post radiation. My Dad doesn't drink much water, so I believe that could contribute to the dry mouth. We haven't gotten a clean diagnosis yet, but we are very hopeful.

I pray that this will be behind you soon, and that you will be back to paddling in some peaceful waterway soon.

Best regards,
Deb

Welcome Indy,

You have found a great source of support and information on oral cancer. I wish you good luck as you travel through your treatment phase. Please post any questions you have as needed, someone seems to always have an answer.

Welcome again, Dan