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Radiation Therapy

lyolan1
Posts: 95
Joined: Jul 2009

I have rresigned myself to my diagnosis and am going through the stages of care. My first step is a PET scan, followed by a neck dissection to remove a swollen lymph node, finishing the whole odessey with radiation/chemo.
Question 1: How often do people lose their teeth from the radiation therapy?
Question 2: If the cancer is in my tonsils, how long will I be laid up? Pain scale?
Question 3: my swollen lymph node seems small, to me. will there be a depression in my neck after recovering from surgery? Alex.

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jkinobay
Posts: 247
Joined: May 2007

Your Questions 2&3:

In my case the ENT Surgeon was also a Plastic Surgeon. I asked him if while he had me on the table could he make me look like George Clooney or George Strait (two of my wife's favs). He said he was good but not near that good. Anyway, with his surgical skills he made the incision (about 2 inches) in a 57 year old wrinkle. As a result, to this day you have to look hard to find it. Not really a depression but it does feel only slightly "different". Not a big deal at all. As for being laid up, I was home that afternoon and ate a regular meal about 6PM. Moving a little slow but didn't effect me much. I will say however that my tonsillectomy/adenoidectomy was done separately about 2 months later and it was much more difficult to deal with. Still, I was only slowed not stopped. Everyone's pain tolerance is different. Mine is very high so I only had to take one Vicodin that day and from then on mere Advil was sufficient. And, remember, I am 10 years older than you which is in your favor.

Your Question 3...

RE- Teeth: All of us respond differently, are in different stages of progression, have different treatment protocols, etc., so it would be impossible for any of us to predict with accuracy how your situation will progress. I recall you are about 10 years younger than I was when I started down this path 2 years ago. So, hopefully you have taken good care of your teeth and mouth up to now. In my case, my teeth were/are in very good shape. My Rad Oncol had insisted I get to a Dentist pronto to be screened for any problems. As luck would have it my regular Dentist had 13 years treating HNC patients at the VA in Tucson. He checked me out and gave us an all clear. He said he wanted to see me every 2-3 weeks to stay ahead of problems. He also wrote me up a daily regimen of mouth care for during and post treatment stages. Thanks to him the worst I had was irritated gums which went away within 2 months post treatments. Basically his regimen was this:

***Use a non-alcohol mouthwash multiple times a day such as Biotene. You can get it in almost any Pharmacy. He sold me a gallon for $30 which was much cheaper than OTC. During treatment I used it probably at least 10 times in a 24 hr. period. Certainly after every meal. I still use it daily and a gallon lasts a long time.

***Get a very soft bristle brush so that you can actively brush without causing damage to your gums as they may become compromised, sore, etc. Also, get a product called Ulcerease which is a mild deadening liquid that you may need later on to temporarily deaden your mouth just before you brush. But, you have to brush. I got the Ulcerease at a Walgreens I think. Cheap, get it and have it just in case.

***Ask your Dentist for a prescription for liquid Lydocaine. Have it standing by just in case your gums get too sore for the Ulcerease. Brushing is the goal here, especially the gum line in the "shot zone" area of the treatments.

***Ask your Rad Oncol for a prescription for Miracle Mouthwash or some call it Magic Mouthwash. Each Doc has their favorite recipe and it will have to be mixed by the Pharmacist, but the goal here is to prevent Thrush which is basically a yeast infection than can occur. This med will have to be refrigerated and will have a finite shelf life, probably less than 30 days or so. Keep that in mind.

***Mouth sores are common. My Dentist said in order to minimize them to frequently rinse, gargle and spit with a solution of hot tapwater in a glass with 1/2 Tsp. baking soda and 1/4 Tsp. of salt. This helps to regulate the PH in your mouth and minimize the sores.

***Be sure to eat and drink by mouth as long as you can. Many people make it all the way through without using the PEG tube. I wasn't so lucky, I had to go to the tube in about Week 5 and for about 5 or 6 weeks total. BUT, and this is very important, be sure to swallow something if even only water 2-3 times a day no matter how sore your throat may get. Doc's told me that your swallow mechanism can atrophy very quickly and forcing yourself to swallow each and every day will greatly accelerate your recovery and minimize your dependence on the PEG.

***Another hot tip for Just In Case.........ask for a prescription for Roxicet (liquid Percocet, red syrup). It is inexpensive so if you keep it on hand as treatments progress you will have it if you need it. If you don't need it, great because it is powerful and can be habit forming. It can be taken via the PEG or by mouth and it will knock down throat pain greatly allowing you to sleep better. The prescription I was given was for 1 to 1&1/2 Tsp. each 4-6 hours. Fortunately at my worst point I only needed it about once a day/evening for the last 3 weeks or so, 2 of which were after treatments ended. Please remember that radiation will continue to "work" on you for 2-4 weeks after the treatments stop. This is normal.

Another related point, you will want to start using an electric razor to shave. Blade shaving can irritate the delicate skin during treatments. IMRT Radiation Therapy is the ultimate electrolysis. Your neck (360degrees) will be baby-butt smooth after about Week 5. Two years later it has not grown back and they say it likely won't.

Don't forget to ask the Rad Oncol about Emu Oil or their recommended skin treatment. You will want to start that probably about 2 weeks before treatments begin.

OK.......once again, probably more than you wanted. Sorry but when I get wound up and tapping the memory well......I get verbose.

Keep us posted............JK

lyolan1
Posts: 95
Joined: Jul 2009

Hi JK, Thanks again. I am going to print your response out and bring it to my next appointment. This waiting for "the sword of Damacles to fall" sucks! I just want to get it over with. Cut the sucker out, poison me, and zap me. My PET is tomorrow. When I am under durring the neck dissection, I am going to tell them to put in the peg tube and a port for the chemo, why torture myself with an I.V. everytime I need a treatment. Even though I could stand to lose 20 lbs., I do not want to come out of this like I just walked out of Auschwitz. I guess it is time to man up and get myself mentally prepared for whatever can happen. After this is over, I really think I might try to do something to bring this issue into the public forum. If you want to make a case for abstinance in young people, this is it. Think about it, sex or head/neck cancer. The risk may be low, but why even risk it. I have not decided if I am lucky that I live in the time we do or unlucky because it has been an issue that has not been brought forth by the public health officials. Have the public health agencies figured out the percentage of men exposed to HPV who contract SSC? Again, unlucky if it is a small number. Like Camus said, "life is absurd", lacking fairness and sense, however, we must rail aginst this absurdity and do everyting we can to overcome it. Alex.

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jkinobay
Posts: 247
Joined: May 2007

Please update us on your progress when you have time.

lyolan1
Posts: 95
Joined: Jul 2009

Hey JK, How have you been? It's been a while.I hope your summer is going well. I have been very busy trying to get my affairs squared away at work and trying to get as much fun in as possible before I had my surgery last Friday. Well, I had my appointment with "Jack the Ripper"(kidding) last Friday the 24th. I now have an 8" slash across my neck where they did the neck disection. The PET scan revealed that the cancer was in my tonsil as the doc expected,which he said was good because it did not spread to any other location. He removed the tonsil and said that the tumor was encapsilated in the tonsil, also good. Not sure why. He also took out 10 lymph nodes for biopsy. I spent 3 days in Mass Eye and Ear. I stayed home MONday and Tuesday, found time and energy to see my daughter attend a track meet. I got a few looks with this gash across my neck. I like to let peoples imagination run wild. Things are going well at work. Right now I am a little out of my mind on percoset. The 4hrs. I spent at wrk catching up did me in. Couple of questions.
Right now, the next proceedure is to do the biopsy on the lymph nodes, set up ameeting with a panel of oncologists to review the results (which I will attend), and formulate a strategy for treatment. What does "encapsilated" mean? and why does that effect the radiation/chemo treatment? If the cancer was encapsilated, why did my lymph nodes swell up? I thought the chain of events was get cancer in an organ, the cancer emmits cancer cells that are collected by the lymph nodes, which lead to swelling, which triggers the cancer diagnosis. As far as the radiation goes, looks like 3 weeks till the start. JK let me know if you have any info on the chain of events. Alex.

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jkinobay
Posts: 247
Joined: May 2007

When he says encapsilated, think "contained". Mine was "contained" in a lymph node but had metastisized there from the tonsil. SCC is a blood-born form of cancer, meaning it likes to travel in the bloodstream and its favorite targets are organs, especially the lungs, liver and kidneys. So, I think it good news that their opinion is that it was encapsilated.

Upcoming events, I can only tell you what mine were:

First (after tonsillectomy/adenoidectomy) was a PET scan to see if there was cancer anywhere else. Turned out the answer was no.

Second, Chemo Oncol. prescribed a 2 part program. Cisplatin chemo, low-dose, once a week with IMRT (focused radiation)Sent me to Rad Oncol. for their expertise.

Third, Rad Oncol. did CT Scan to map the region and spent 2 weeks writing a program which ended up being 35 daily treatments, 5 per week, with 12 "shots" each. Total of the 12 shots was only about 10 minutes or so of exposure. With the CT Scan they made my mask and bite block. All total only about 30 minutes. Not fun, but doable.

Each Rad treatment took about 15-20 minutes including settup and breakdown, again only about 1/2 was actual zapping.

I took low-dose Ativan to help me through the IMRT treatments. I also taught myself how to mentally go somewhere else (on my boat, with my grandkids, etc). Another "trick" that seemed to help, I counted the seconds of each "shot" before the machine would move to the next zone. By doing that I memorized the program and new at any given time how much longer until I was out of there.

Chemo was not bad. Just had to really focus on hydration and nutrition. That is where the PEG tube saved the day. I had the PEG tube placed at the end of week 2 of IMRT.

None of this will be fun. It may very well be the hardest thing you have had to endure. Obviously the alternative is not acceptable. So, it is all very doable and has to be done.

Keep me posted.

JK

lyolan1
Posts: 95
Joined: Jul 2009

Hey JK, What's the good word? I hope all is well with you. Do you live in Mexico? Your boat picture looks good. My family has a house on Cape Cod Massachusetts. The beach and water are awesome. I don't have aboat at this point in my life, I like to play golf in my spare time. Since the confirmed diagnosis, I have spent most of my time there. I had surgerey last week, man,"that hurt". Glad it is over. I get my stitches out tommorrow. My neck is sore and tight. My tonsils are still tender.Friday i get my consult with the oncology team. I do not know how my good news will translate to treatment going forward. the dr. mentioned a possibility of no chemo. I hope this is not an Obama health care cut back. My wound is healing nicely, swelling is down. Just sore and stiff. I think I am still 2-weeks away from radiation. It would be a real bummer if I went to radiation before I get to heal from the dissection. The 1- year check up appointment must be brutal, the waiting. All I can do is wait for the options, decide, and git her done! I feel pretty good so far. Keep you posted. Alex.

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jkinobay
Posts: 247
Joined: May 2007

I think with any form of cancer there are only two directions to turn.........forward, or downward. You have chosen wisely to attack the beast and move forward. Congratulations.

Yes, my wife and I live in Mexico in a sleepy little fishing village about 200 miles south of Tucson, Az. My employer transferred us there almost 10 years ago. I will likely retire there, maybe even by the end of this year. As with living in any Third World Country, there are benefits and drawbacks. The boat you see on my icon is one of the major benefits. We bought her about 4 years ago and go fishing/cruising on the Sea of Cortez frequently. Fresh seafood on a regular basis, also a good thing.

As for your post-surgery experience, all sounds perfectly normal. The stiffness and soreness will go away pretty soon, progressing noticeably. As for radiation, in my case I had the lymph node surgery in May, the tonsillectomy in July and didn't start chemo/rads until late Aug. SCC is very slow in progressing so I don't think a few weeks makes a lot of difference. More importantly is that a) they give you ample time to heal before proceeding, and b) they take their time in designing the perfect treatment protocol cusomized to your specific needs. That alone will take at least 2-3 weeks. So, relax and heal up.

Keep us posted on what they prescribe. You can do this, you have to do this for yourself and for your family. And, moving "downward" is not an option.

JKou

PS: I wouldn't worry about Obamacare. It appears that the majority of the folks are starting to realize the Buyer's Remorse that was predicted and are rising up. I think IF there is healthcare modification it will be watered down and less invasive than the all out Socialistic approach it might have been. Again, don't worry about this. Focus on feeling better and healing up for the big fight.

John oldtmr
Posts: 33
Joined: Jun 2009

Thanks for this JK. I copied it and will sure be referring to it as this progresses. Got my 5th rad treatment today. 28 to go. Have had dry mouth today, but kind of had it a little anyway before this.

Alex, I didn't get a port 'cause I'm getting Erbitux so only one dose a week. Hang in there Alex. I guess I'm like you, wanted to get started, go through whatever is coming, get it over, and get back to life.

Keep us up to date,
John

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jkinobay
Posts: 247
Joined: May 2007

I too had only once a week low dose Cisplatin and did not have a Port installed. My IV was taken in the back of the hand or the side of the wrist with them alternating sides each time. This also worked well for re-hydration on into treatments. Alex may have a more involved Chemo course than we had.

It is incredible and unbelieveable to me that even pushing a 50-50 mixture of Pedialyte and water to the tune of 80-100 oz. per day that I still got deydrated and had to go in about once a week for probably 4 weeks for a re-hy IV. And, the toughest part was the 2-3 weeks immediately following Rads once they had stopped. Really made the difference though.

Hang in there fellow Cancer Fighters................JK

altoman's picture
altoman
Posts: 7
Joined: Oct 2009

Hi cancer fighters!

I did T4 squamous cell carcinoma that started in my right sinus, broke through my upper palate, and took out my upper jaw and 6 teeth on the right side. My first surgery was February 2007. During my RAD days, I noticed a lump in the left side of my neck. The T4's took a cross over ride from the right to the left (happens to 1% of us) and invaded my lymph nodes. Consequently my second surgery was in August 2007 to remove the lymph nodes on the left and biopsy those on the right. Then they continued going RAD on me daily with a little chemo cocktail once a week for 5 weeks.

I started the feed tube the 3rd week of RAD, that's when I stopped eating real people food and started on Isosource 1.5. I had it removed in December of 2008. I now suck down 5-6 cans of Isosource a day supplemented with cream soups, pudding, ice cream, and v8 juice.

I do not believe that I have much of any saliva glands remaining, 2 years, 1 month out. I have minimal taste. I will never be able to eat solids. A bread crumb, piece of rice feels like sand, grit. Saliva creates a bolus around food which helps the food go down the ol trap and be swallowed. I'll need to puree or juice everything I eat from now on.

There are three times when my mouth goes really dry and sticks to itself, 1) when speaking, 2) when sleeping, and 3) when working or exercising outdoors/indoors.

I tried every commercial product that I came across, sprays, gums, gels, etc. I do carry a bottle of water but it doesn't do what I need done.

Therefore, I developed an electronically controlled dry mouth "wetter". It can be programmed by the user (me) to deliver water to my mouth when its needed. It's in development at this time but I intend to market it very soon to help active cancer fighters such as myself who have serious, permanent dry mouth. A couple of companies were gracious enough to provide the components for this project at no cost to me. Many thanks to them. If any of you are interested, please feel free to contact me and I'll keep you posted as to our progress.

There are products currently on the market but we are developing one that is very inexpensive and very portable. This is because the developer, me, has personal experience of fighting cancer and everything that goes with it.

My philosophy that got me through this horror movie is based in humor. If you are laughing, your journey will be a magic carpet ride venture! If you keep on laughing your body will keep on fighting ... to the end.

I have a deal with a local restaurant owner who boils me up clam chowder soup broth and red pepper soup broth. He strains all the solids for me. Mmmm! So, I can actually go out to eat with my wife every week like "normal" people. He has agreed to cook me up several gallons so that I can enjoy the stuff back home as well.

Great seeing all y'all here and keep on posting!

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