Hi everyone, my name is Linda West, I'm 46 years old and from Houston,Texas, and a patient at M.D.Anderson. I was diagnosed with Squamous Cell Carcinoma in March and just recently had my tonsils taken out and found the sorce!! Yipee!!! So what i here...the fun part comes next....the dreaded "Radiation"!!! And i will not lie, im scared as hell! So any great resources out there to make this a little easier, will truely be appreciated! And of course any new friends would be great too

Hello, Linda. First of all, know that everyone is scared going in. You can be happy that you are being treated at a first class facility. I was also very frightened of the unknown, and prepared for horrors that my creative mind conjured up. To my great surprise, while it is not a cake walk, it was nowhere near as terrible as I had expected.

First, go here: http://www.oralcancerfoundation.org/facts/radiation.htm

And read the entire section. Many of your questons will be answered. Where you are right now, there is nothing better than factual information, which this is.

Lots people will share their experiences with you. Every single one of us reacts differently, so you really will just have to wait and see. If you have chemotherapy also, that adds another dimension to what you will experience.

During the course of your treatment, as questions arise, be sure to come back and post them here, as there will always be someone, and usually several people, who have experienced the same thing and can provide the answers you need.

Right now, just take a deep breath, know that radiation is doable, and read the section of this site with the information you need.

You can do this!

Joanna

Hello Linda, no doubt you will make some friends here. As to the Radiation, don't blame you for dreading it-BUT- there are things you can co to make it easier.
1st: eat everything you ever dreamed of between now and when you start.
2nd: Get your support group lined up to help you do things you might not feel like doing during rad.
3rd: There are people here from Houston you might like to meet
4th: Read everything you can on OCF related to rad tx. so you can ask good questions of your Docs and insist on good answers.
5th: Ask your questions here too and tell us more about you so we can better relate to your situation. This is doable, but it is easier "with a little help from your friends." Amy

Goodmorning Linda,
I too found the source of my cancer was my tonsil, that was only 10 months ago, since then I have done the radiation, done the chemo, had the neck dissection and am currently doing HBO, but that is not standard and hopefully you can avoid that part. Like all others have said you can do this, not standing onyour head of course but very doable. Every thing that Amy said in the previous post is right on the money. The only thing I will add is if you are not getting a PEG tube you need to look into that right away, other than that go with how you feel, will it get you down and make you cry? of course just go with it, lean on your family and friends. They want to help. and of course come to this site you will not find a better group to hang with, we here will guide you as best as we can. Hang in there my dear all will be well.
Lenny

The good news is you are going to be treated at one of the top facilities in the world. Hopefully, you will come through treatments with little discomfort..
Good luck
Darrell

Hi Linda and greetings from a fellow Houstonian (south-Clear Lake/Seabrook.) Also a patient at MD Anderson, carcinoma of the epiglottis. Laser surgery this past May, no chemo, no radiation. I was at MD Anderson this morning for a Modified Barium Swallow and also follow up with the surgeon. Honestly, I can't say enough good things about MDACC. As others have mentioned, you are being treated in a world class facility. I'm very new to the forum here and I spend lots of my time reading all of the great posts here and fantastic info. I wish you the best...
Russell

As an MDACC alumni I couldn't be more happy about how they reached in and pulled me out when I was circling the drain. I love this place. Do a search for digtexas and drop him an email. He's also a past MDACC patient and lives right in Houston.

Linda,
As Brian wrote, I also live in Houston and am a patient at MDACC who also underwent radiation treatments. The people there know what they are doing and they saved my life and I am very thankful for that. Having said that...you must realize that M.D. Anderson is a very large hospital that treats thousands of people and at times you can get lost in the shuffle. It can be a bit of a cattle call.
As others on this forum will tell you, you must learn to be your own advocate. If you have questions, ask them...don't let the doctor just rush off to his next patient. If you are waiting for what seems like an unreasonable period of time...get up and complain to someone. Meet your patient advocate, meet a social worker at the Wellness center and find out what free programs are available to help you with counseling or anything else that they offer.
You will learn most of what you need and get lots of support right here on this site.
Please email me at [email protected] if you would like to correspond.

I wish you all the best on your upcoming journey.

Danny G.

Hello everyone. My name is Anne and I'm 49 years' old. I had squamous cell carcinoma of the nasal pharynx. I had radiation and chemo, and ended up in the hospital a few times due to low white blood cell counts.

I'm struggling a bit with the new "me" - having to drink tons of water, eating bland foods and nothing too sharp, etc.

I was wondering if any of you have good nutritional ideas. I struggle with finding things to eat. One time I can eat mostaccioli, the next time it's too spicy.

Any ideas?

and thanks!

I just realized I did this wrong -- sorry, Linda, for imposing on your posting!

Some ideas I can share with you, since I had both radiation and chemo: make sure you go to the dentist and get your teeth checked immediately! I ended up with many cavities as a result of the the radiation and chemo. If they can protect your teeth during radiation, they should.

You're going to be very tired during the radiation, so make sure you take good care of yourself. It's wierd that you can be so tired after just 15 minutes a day, but you are.

Most of all -- take care of yourself!!!

Good luck!

Linda,
Regarding Anne's advice...M.D. Anderson, as part of their regimen, will send you to their onsite dentists to analyze your dental health and to determine whether or not teeth need to be pulled before beginning radiation. Some of my favorite doctors in all of my MD Anderson experience were in the dental section.

Danny G.

Wow, this is great guys, im touched that i have received such support from all of you! Now, this is "doable" no doubt! I have written down alot of things im going to ask for...such as the Fentanyl and the Biafine. Tomarrow is the big day, i learn my fate...chemo or radiation or both! Are there any bets? The "PEG" is not out of the question here, remember i just got my tonsils taken out, and i have a feeling, this was just a taste of how the radiation is going to be. And for all those who have wondered about my smoking...I am a NON SMOKER of 12 weeks!!! And damn proud of it, but ashamed i ever did smoke in the first place! As of the teeth, my daughter is a dentist, so how lucky can i be! The floride trays are in the making and the dental hygiene will be watched closely But i do have an appointment with the Dentist Oncolgist next week, i think 6 or 8 will have to come out. (It just seems to get worse everytime i go) I did get some good news though, My CT of my chest came out clear, and that they said needs to be watched every 3 months for awhile! OK, before i call it a night, one last request...when i had my tonsils taken out, the canker sores in my mouth multiplied in days, my sister found a fast cure for them "DGL" but what i need is how to prevent them altogether? Or am i just dreaming... After tomarrow, after i get over the shock, i will let ya'll in on the treatment. (After i cry and scream and say "why me") Thank you again for responding to me, i dont feel like im alone in this anymore, i have someone that understands and i mean really understands what i will be going through. And thanks to my bestfriend (my sister)for being my rock "Thank God for Sisters"!!!

Hi Linda,

Congrats on stopping smoking. That is a great accomplishment.

I can address your concern about the sores and trying to reduce their occurrence. Please check with your docs, but I prescribe and use L-Lysine myself, an amino acid which is available in any drugstore and is over the counter. You can take one 500 mg tab a day as a preventive and if a sore starts despite taking one a day, you can go to 2 500 mg tabs in the morning and 2 at night.

Good luck tomorrow and don't forget to ask if L-Lysine is OK. I don't know of any contraindications for it.

Jerry

Congrats on quitting. Stick to it.

I too tried everything to stop smoking. Pills, patches, hypnosis, when I woke up from the surgery and they told me it was cancer, I never touched another. That was just about three years ago and I have not had one and have absolutely no desire to ever have one.

To be honest, When I think of all the damage it causes people I cant believe that it is legal.

And, after what I went through I can get pretty nasty with people that smoke in front of me. I never thought I would be that guy.

I was standing in line to get my drivers license renewed the other day and their was a guy right in front of me (line was out the door) lighting one up after another. I told him to stop and swiftly got a lecture on how it was his right to smoke in public. Then I got a manager and told them I was a cancer survivor, smoking was the cause, and that he was putting me in danger by smoking in front of me.

I might have said something about hearing from my lawyer as well. At that point I was moved to the front of the line.

Glad to hear you quit. It

Linda,
Dr. Chambers, the dental oncologist at MDACC prescribed an "oral wound rinse" for me that is available in the pharmacy at MDACC. When you meet with the dental oncologist, ask about it.

Danny G.

Well, it wasnt as bad as i thought! Here it is...No Chemo (which i was expecting) but they said, dont need it since it was caught so early, I finally found out what stage i was in too. T1,N2,M0. But the radiation, i have to do, 6 weeks of it. Thanks so much for the L-lysine idea, i talked to the doc and she said she had no problem with me taking it. Wow, Jerry, your a dentist and ended up with this ! My oldest daughter is a dentist too, and when i told her I had SCC...well you probably know what her reaction was. Congrats on the one year... And guys thanks for congradulating me on my not smoking anymore, and "no" i wont cheat or ever smoke again, trust me! And for all of you that had to breath my second hand smoke, "Im sorry" and Danny, its funny you said something about Dr. Chambers, cause im going to see him next Friday in surgery when Dr. Martin takes out my teeth, he will be fitting me for my stint, so i will ask him for the oral wound rinse, thanks! Well im glad its the weekend and no more doctor appts. (the weekends help me feel normal and not like a cancer patient, weird huh?) Until next week...Have a great weekend and God Bless all of you, thanks again for all ya'lls support!

Linda,

You're welcome and I hope it works. Those apthous ulcers can be really painful at times.

If you or your daughter care to talk, send me an email with a phone number and I'll give a call. I am, however, leaving for a 2 week vacation on Monday. I will be around until then.

Good luck with the radiation.

Jerry

Linda,

Based on your information, doesn't that make you a stage III or IV? I was just suprised that they didn't recommend chemo if you are in one of those stages.

Sarah

Ditto to the above post. Also, did they do a neck dissetion to remove the affected nodes?
Welcome to the site and best of luck with your TX. OCF will get you through. It's been my savoir thru this as a caregiver.

yes they did take out my cervical lymphnode. And all i know is that they told me, that chemo would not do anything for me besides make me sick and i would not benefit from it at all since they caught it so soon! They feel the radiation will do the job. And the chemo would be an overkill i assume! They even gave me a study that m.d. anderson has done and it shows to be what they have told me. And i stand to be corrected....T1,N1,Mo. im sorry about the typo error. Thanks for the concern so do ya'll think i should question m.d. anderson about my treatment? Please let me know it i should or not? Hey, Danny G. what do you think (since you are a patient there too) Now you got me running scared...Brian, how bout you?

I think it's safe to say your in good hands...MDACC knows just a little bit more about how to treat this than we all do. It's just because you see most people here have chemo, but like you said they caught yours so early which unfortunately isn't usually the case. Sorry we got you nervous. Your at a top CCC so I think you need not question their abilities but always ask questions to put your mind at ease. :p

I agree with Kerry. MDACC is a great facility, so I am sure they know more than me!

well i went to Dr.Martin (dentist) today, and got some good news...only 3 teeth have to come out on the right side. Yipee! They will not be removing any on the left side, due to no Radiation on that side. Another Yipee! So back to MDCC on Friday for the removal of the teeth...Im finally eating all the good stuff again (after the tonsils were removed) Here i go again...hopefully this will be alot easier!

Well the removal of the teeth got put off! Until when? Hopefully Monday or Tuesday! It seems like there is always something...Im at the point, lets get this started so i can get on down the road and start to live again, without "Cancer". I think this is more of a mental thing, than anything else. Getting very impatient with all of this, Waiting..........

Linda,

Are your teeth in bad shape? I thought they didn't remove them unless they thought that the teeth couldn't hold up to the radiation.

Joy

My husband is near the end of treatment for squamous cell ca un known primary. He will have had 39 IMRT and 3 rounds of cisplatin. He has a gtube but using it makes him sick so he is drinking shakes. We found Suplimed substi-meal online. It was developed by a md and patient and yeilds 600 cal per 8oz. We mix with a can of prosure and some fruit for over 1000cal. Hope this helps it is $32 for 16 servings and can be ordered on-line.

Joy, My whole life i havent had the best of teeth. And the funny thing about it, I come from a family of dentist! I guess, just some more of that great luck i have. (Haha) Today is Monday, so hopefully i will here something from someone. Just tired of waiting on everyone else...lets get the show on the road!! I cant help but believe, the sooner i do this, the sooner it will be over with and my life starts over again (I know i have to go through "Hell" first...but im prepared to haul butt. Ready...Set...Go!!! )

Lauriern, thanks so much for the information, i feel everything i can know going into this, maybe it will just make it a little easier. I hope your husband is doing good, and thank goodness he is at the end of the tunnel...and can see the light. ( looking forward to that, myself ) Thank you again, and God Bless you and your husband.

lauriern, thank you for posting this information about the Suplimed and prosure. I just ordered both online, overnight delivery I'd never heard of either one of them (not had I heard about Nestle Nutren) from my so-called 'professional' team of RO's and ENTs. The best they can come up with is Carnation Instant Breakfast (double-barf).
Riley

Linda,
I know how you feel. I am now in Houston, and tomorrow begins the consultations and testing at MDACC. I am psyched up and ready to "haul butt" too, to get back to my "regular" life. But as my DH says, sometimes you gotta put your life on hold and take care of yourself first. Hang in there.

Joy

Joy, Welcome to Houston!!! When did you get in? Glad you came, good luck with tday, remember be patient with your appt. times, expect them to be at least 2 hrs. later (haha) Keep me posted!

Good Morning everyone, Today is a new day for me...I have no back teeth! (on the right side) I thought is would be a little easier than it was, but at least its over. Didnt get the stint, to much swelling, so going back on Thursday to do that. Can anyone tell me what to expect? I feel better when my mind is prepared for this. The stint is used to protect my other side and my tongue, correct?

Ok, the stint is made and i go for simulation on Monday. Then the big day arrives on August 7th. I have been thinking about switching to "currently in treatment" but i dont know if i have that right yet or not? I kind of feel like im out here in limbo...waiting (always waiting) 10 days to the count down...So i guess its time for me to take all of ya'lls wonderful advise and prepare for the upcoming dreaded "Radiation", so im out of here for awhile, until i feel i have earned the right to be in "Currently in Treatment" (which will be the first day of rad. im sure) So thanks guys, its been fun, we will talk soon!

Linda,
Radiation was the toughest part of my treatment. Be ready for some difficulty in eating, as swallowing was nearly impossible for me at the end (mandibular SCC III/IV). Nutrition and hydration were critical - my wife is a registered dietitcian, and milk shakes made with Boost nutritional supplement and cocoa wheats cereal got me through without a feeding tube. No five years past the surgery and doing great. I lost one toothe due to resorption after treatment, and of course 5 due to the surgery. Fluoride treatments every night seem to be keeping the teeth I still have intact.

Best of luck to you.

Hi Linda,
You were pretty close about the appt times--mine was 3 hours late, not 2! I'm getting ready to fly back Tues. I am having an FNA (before surgery) on several lymph nodes in my neck that the radiologist read as "suspicious", with some on the OPPOSITE side of the neck from my tumor. I am sure hoping they don't have to do a dissection on both sides of my neck. I'm dreading it but at the same time I sure wish it was over... Also I am told that if more than one node is positive I will need radiation, which is a shock since none of the docs could feel anything during the physical exam. Keep your fingers crossed for me.

Joy, it is great to hear from you, i was getting worried about you...i thought you were still waiting to see the doc!! HaHa. Although, it is bad, your appointments are never on time! But i promise you, M.D. Anderson is so worth it. Im keeping my fingers crossed for you and praying at the same time. Let me know how it is going for you. Good Luck and God be with you.

Tomarrow is the official day...the day i have so dreaded and yet the day i cant wait for it to start! After tonight i will be "officially in treatment" My appointment is at 6:45pm! So, here i go...I hope i didnt forget anything, and im truely ready (or would i have ever been really ready for this?)I took everyones advice on what to do to make this go smoother(been gathering up all my supplies)so the only thing that is left...is me walking through that door! I wanted to leave this site "introducing yourself" with a little something that was sent to me...www.thesurvivormovie.com just click on this and enjoy! And thank you to all my new friends on here, all of ya'll have been a true blessing! See ya'll on "Currently in Treatment"

Do not forget to put a big X through tomorrow on the calandar when you get home, because you will be one day closer to being finished with treatment. Good luck!

Best luck, Linda. Keep talking to us. Amy