Hi I am David and new to the site. So I guess this is how you start, by what I have read.I discovered a small lump in my neck 3 months ago. At first my GP treated it as an infection, but it did not go away and in fact got larger. The next month, he sent me to the ENT. He said it was a small cyst and we should take it out just to be safe. So we did, but when he got it out it was the size of an egg. It was hiding in my thick neck. That is when we discovered that it was SCC cancer. I had no signs before that time. They have now taking my left tonsil out and discovered that they think it was the sorce. They sent me to the denist and got all those treatments done. I am thankful that I went to a dentist before the oral surgen. The dentist examined my teeth and treated a few things and gave me the floride trays.The oral surgen took out one tooth root that the dentist, said needed to come out. But he said that if I had come to him first he would have recommended that all my teeth be removed, because of the possible compications after the rad. I would have done as he recommened because of my ignorence of this beast. So know I am scheduled to have a peg tube put in on Tuesday, get my mask refit again on Wed and start 7 weeks of rad treatment on Thur. Thankfully they are all moving fast and not giving me much time to think about this dieses. I have an appoinment with the chemo people to discuss the possiblity of doing chemo also. But right now I am going to try and avoid it because of how much more it magnifies the side effects, exspecially since my beast was caught so early. Well that is my story so far and I just want to say THANK YOU ALL for the posting for other people, because I was able to read and learn alot from people who really know what is going on. Before I was just blindly researching and it was scary. Now I know where I can go to get the information that really relates to what I am about to go thru. Once again THANK YOU ALL

Welcome David.

This site and its wonderful members has helped me also. I had right tonsil cancer which presented with the same symptoms as yours. Now I am 4 years from end of treatment and doing well. It sounds like your dentist is doing a great job with the fluoride trays etc - it is so important to keep your teeth and mouth healthy.
Please keep us up to date on your journey - most of us have been through similar and can offer understanding.

Best wishes and love to you from Helen

Mine presented similar as yours, only left side. I would seriously consider the chemo. You only want to go thru this once. No talk of a modified neck disection?

Thanks for your response. No so far Rob their is no talk of a neck disection. When they took the cyst out the examined around neck and at that time they did not see anything, that looked like cancer, it wasn't untill the results came back from the patholigist did they discover anything. when they took out the tonsils he also did several types of scopes to check the other area's of the neck and thanks helen for your responce will keep the site informed of my progress.

David,

I would go for the double whammy of radiation and chemo at the same time if at all possible. It is a bit rougher on you as the patient but from all I read and heard during my Tx period it is the only way to go for maximum favorable results.

Godd luck on your upcoming journey and keep tuned to this forum/site.

Bill D.

David,

Catching it early as you say really isn't the whole story. They have found your primary and you already had mets to at least one node and a very large one at that. I believe you would be staged a IV and I definately would go for the concurrent chemo. Most only get one shot at killing this cancer and most believe it's better to give it all you can the first time.

Listen carefully to all your cancer docs and seek additional opinions if necessary. This is your life you are talking about and many people die each year due to this cancer. The treatments are tough because this cancer is very agressive and doesn't go away easily. Don't think you are doing yourself a favor by saving a treatment for a reoccurance because so far radiation is the only proven killer of our cancer but chemo does improve the rads ability to kill and therefore is often recommended. Be your own advocate and fight your battle with all weapons out there and improve your chance of surviving.

Hi David,

To give you the "other" side..............I did not have chemo, only radiation. I had XRT radiation. I had microscopic cancer in one of my lymphnodes, so my docs decided against cancer. That was four years ago and I'm still doing fine. Are you having IMRT? I do believe that most with IMRT also have chemo.
Minnie

Are you being treated at a comprensive cancer center? If I were you, I sure would like to have their opinion on the matter. Have you had a PET/CT scan? I would insist on that too. It will show any cancer activity that might be too small to see.

I would have to agree with David here saying that you usually only get one chance to kill this thing and throwing the whole nine yards at it seems like the only logical choice to me. I did whatever my docs told me to do and chemo was always a part of the aggressive treatment to kill it.

Welcome to our forum bud and please do not hesitate to ask any and all questions you may have my friend.

Billy

Wow you all sound like I need to rethink the cemo part. So I will talk with the cemo Dr and see how they feel. But right know my Rad Dr. says it is not critical for cemo and he says he is going after a complete cure. But I will keep an open mind till I see the other DR.

August I don't know if it is a Compresive Cancer Center, but it is in one of our major hospitals here and it is the Radiation Oncology Section. They have already done the PET scan of the neck area and another of the entire body. The only hot spots they found was behind the cyst that was removed, it did not pick up the cancer in the tonsil tonsil.

So 2 weeks later the ENT removed the tonsil as a precaution and found what they say was the sorce. At that time he said I would only get RadX on the left side, but the Radiation Oncologist says no we have to do both sides, because of the fact that it can jump to the other side, so once again precautions.

I do not know what type of radX, but I go for the PEG tube tommorrow, so I will go see the Oncolgist and ask what stage and type of radT. I dont know what IMRT is, So another reason I am on here, Thanks for everybody help.

David --

If you are a non-smoker and have tonsillar SCC, you may well be HPV positive -- this affects both prognosis and response to treatment (better) but you should be tested. If your hospital doesn't do it, Johns Hopkins does:

http://pathology.jhu.edu/labservices/hpv.cfm

There is a lot on the OCF web site and also, this forum, about HPV since it is now generally recognized as a major factor in some forms of this disease. Lots recently due to a paper published this month linking HPV to tonsillar and base of tongue cancers.

As to treatment, the recommended treatment for a stage III or IV oral cancer is chemoradiation. If it will make you feel any better, my husband (who had very similar experience as you with neck lump etc) and who was treated at Hopkins, says the chemotherapy was a "non-event" due to the excellent new antinausea drugs and careful oversight, the real difficulty was with the radiation and its side effects during treatment. The usual drug is cisplatin but the much less toxic drug carboplatin is being used more widely and you should ask about this (my husband got carbo- only).

IMRT is the most targeted form of radiation, and allow the radiologist to avoid the many deligate organs in the area of the throat, and helps preserve salivary function. Get on the OCF web site itself and look all this up before meeting with the doctor. Ask about salivary gland preservation, swallowing therapy, and pain and other side-effect management -- the PEG is there to help you stay hydrated and fed during treatment but you will need to try to continue to swallow (even tiny sips) during therapy to maintain the ability. It can be lost!

This road is hard but many get through and resume completely normal lives, so go into this with confidence and optimism...

Best,
Gail

David,

Don't talk to the rad doc (RO) about chemo. Talk to a medical oncologist (MO) who specializes in chemo about the pros and cons of concurrent chemo radiation.

What hospital are you going to? Maybe someone here has specific experience.

Remember that the intense Tx most of us endure only lasts for a 5 to 7 week period and then the slow but gratifying recovery period begins. That is a small time to commit to when the goal is to save your life.

Thanks Gail and David

I have an appoinment with the MO on the 5/7/2007. I will see what they say. I start Radt on thursday so I will have about 6 RadT before I get in with them. But I will listen. I am going to a Radolcolgist called Cyberknife/Ocoligist it is located inside of Centrail Baptist Hospital in Lexington KY, So far they seem to keeping my best interest at heart and they are being straight forward with so far. Where my proublem is, I think he is treating it more agressive than the ENT had in mind, but I am taking it as a good sign. Beacause the ENT said is was just like a mop up procedure, since they got the nod and the sorce(tonsil). But as I have learned from people on here their is no such thing as a mop up operation. It Cancer and I need to take it as if it has control and do everything as if they have not caught any of the previous bench marks. So if nothing else I am more educated and have got to take charge of my own treatments.

sorry 6/7/2007 never promissed to be a good speller either lol

Hello Redbus. Read the bottom of my post and you will find that we are very much in the same boat. I am 2 months post treatment. I had 33 rads and 2 cysplatin chemo treatments. I will have to agree on the info about the concurrent chemo and radiation. My docs pushed the two be done together. I had 3 nodes involved and am now waiting to do a final scan on 6-1 to decide on the neck dissection. I went to the Markey Cancer Center at UK. Where are you from in KY? I'm from Somerset. Good Luck

lee
I am in Richmond

Just right up the road. Keep us updated on what you decide on your treatment. You can make it with the chemo and rad if you choose to do both. Even though I couldn't take my last chemo because my blood counts bottomed out I really didn't feel really bad until the end of treatment. I was pain free up until my sixth week of rad. I feel pretty good now, I'm just waiting for a little saliva and to return to eating. The good thing is I now have a workout partner for the gym. I work out with the same weights as my wife. I'm getting stronger everyday though.

Hi David;

Just reading your initial post reminded me of exactly what I went through 2 years ago. So exact that a chill just shivvered up my spine !

Then reading the replies to your post prompted me to cast my vote along with the others. I strongly urge you to go for the chemotherapy along with the radiation. I had heard about the nasty side effects to the chemo, but the side effects of any post-radiation cancer is far nastier !

Let me share a scary (but as it turned out lucky) phase of my situation. After 7 weeks of radiation, 3 double doses of chemo, and a huge radical neck dissection, I was happy with the results. The PET scan could find no evidence of cancer, and the ENT had carved out what was left of the shrunken tumours in my neck. I figured it was beat.

However, during the routine pathology of the 27 lymph nodes & soft tissue that was surgically removed, evidence of a non-hodgkins lymphoma hiding therein was discovered. My newly assigned, new-to-the-team chemo oncologist had a hard time explaining this to me because I was simply shocked beyond comprehension. I had lost 50 pounds, couldn't eat normally, had zero energy etc. and had survived this far against very dim odds. The only thing keeping me alive was the knowledge that I was the one person in ten of my cancer group and stage who would make it statistically. After what I had been through, this news was devastating.

What was worse was the fact that they wouldn't be able to treat it. Apparently, had they known the lymphoma existed when they started treatment, they would have treated it exactly the same way that they treated the carcenoma in hopes of killing the two birds with the one stone. But seeing as I had already received the maximum amount of radiation I could safely receive, there wasn't anything more they felt they could do other than more testing and possibly more chemotherapy at some point in the future.

Things looked bleak. I remember clearly that in addition to my new chemo oncologist being in the room that morning, my first chemo oncologist (who ranked below the radiation oncologist in my overall treatment plan) was also present managed to sneak over and whisper to me along with one of those knowingly winks of the eye: "Don't worry John, nothing could have survived the 3 chemo-recipes I mixed up for you...." !

I wanted to believe him so badly. And happily, he must have been right. All the subsequent CT scans, bone marrow biopsy and regular follow-up exams could not find any further trace of the lymphoma, and everyone was cautiously optimistic that the treatment I had already received had killed it during the first round, and they collectively decided that no further treatment was necessary.

In my case the chemo was not optional. Yours apparently is optional. My treatment plan was all or none, and I went for everything recommended and then some ! Had the chemo part been optional, I still would have insisted I receive it.

I was scared about the side effects of the chemo, and got myself mentally prepared for a huge battle. It worked, because I sailed through the chemo without losing a single hair on my body, nor did I suffer so much as an upset stomach. And they had filled me with Cisplatin, listed as one mean chemo medicine with acute side effects, mostly vomiting. And I am one person who will do anything to avoid vomiting, I am so freaked out about it.

The point is David, I would not have made it without the chemo. I know that for certain. Even if it were in doubt just a little bit, could I really afford to be wrong just a little bit ? In my opinion, your best shot for a clean kill of this beast is with the first shot - give it everything you got, and then some if you can, and make sure your mind is right too !

From what I understand, the radiation gets the tumour directly, the chemo gets what has travelled to other tissues that didn't necessarily get radiated, and the surgery mops up what is left to be done, if there is anything left to be done. Its hard on you, but as others have pointed out, once is the number of times you want to experience this treatment and medicine per lifetime.

As you already know, you have definately come to the right place for information and comraderie, and I wish you every success with the upcoming battle.

Feel free to email or message me should you wish to discuss the matter in more detail or simply need a sounding board or a rant target !

Good luck, and good cancer hunting !
JT2

David,

I still don't sense you understand that you have a VERY AGRESSIVE STAGE IV CANCER attacking your body and it has already spread to your lymph nodes and the next place it can go would be your lungs and your brain. There is no Stage 5, stage IV is the worst stage of cancer. I would not wait to see your MO. I would be on the phone right now and demand an appt. The chemo works best when given before your first rad and is most effective when the radiation is given while the chemo is circulating in your body. That's why most of us get our 1st chemo the first day rad is to begin.

Don't wait for others to make decisions for you, they are not the ones risking their life on their decisions.

Sorry to be so pushy but the next post I want to read from you is...I saw my MO today and....

Well Davidcpa,
I did what you said I got an appoinment with the MO, but unfortunitly I went down for week an a half with a peg infection and a Kidney stone in the hospital. So I missed that appoinment. They treated the PEG proublem and the stone blockage and recieved readation every day. I have set up another appoinment to see the MO. why they would not come to the hospital, I have no clue. I am now day 12 of the radation treatment. Having alot of proublems with eating but hanging in their have only lost 13 pounds in 2 1/2 weeks. they are wanting me to have 3200 calories a day. Their is just no way. I am afraid I about to have to start to use the PEG for food, but am trying to hold off because I can still eat some exspecailly breakfest meals and can get liguids down, but the thick mucus in the bottom of my throut just make me gag. They have giving me xanax and marinol now to try and help with appetite and nausia. You where right I ask the Dr. and he says I do have stage IV, but they say it is still a clean up procedure, because of the sorce being found. Man if this is clean up I am so sorry for all of you that are going through this not knowing the source and it make me feel like such a wimp, but dang it, this tears away at you. So every body just keep going and keep talking . Because your encourgments, that there is lite at the end of our tunnels, is what is keeping me going in my regards.

Thansk to all
David.
Once again sorry for the spelling, but considering all this I hope you all understand.

Hang in there David. Check into getting the Carnation Instant Breakfast lactose free VHC. this drink contains 560 calories and makes it much easier to take in the calories. That's just 6 6oz cans a day. I think Davidcpa has the website for it. You may be able to google it, I think that is how I ended up finding it. I got the info and took it to my pharmacy and they started carrying it for me. Good luck.

David: Just want to say: hang in there! Sounds like you're a very brave soul! My thoughts and prayers are with you. DO keep us informed of your progress! Lois

Hi David, sounds like you're handling things. A word of advice on the peg tube - it's not an either or with eating. Jack used it and also kept swallowing whatever he could. You just figure out the total calories from doing both.

You bet it tears away at you and that does not make you a wimp. Jack is stage IV and he is 17 months post diagnosis - and doing well. You will be too. He had the peg tube about 8 months in all and was a happy camper the day it was removed. Today his swallowing is almost what it was before, he's back to work, and life is good. Hang in there, this too shall pass. Make sure that you keep checking your temperature, washing your hands, and taking reasonable precautions. Mostly make sure you are staying well hydrated with 2-3 quarts of water, in additon to your 3200 calories. That helps keep the side effects down.

Regards JoAnne

David,

Here's the VHC post I copy of us brave souls:

Try Carnation Instant Breakfast VHC. It has 560 nutritional balanced calories in a 8 oz can and will cut the misery and the time in feedings. You order it thru your pharmacy dept and some have suggested that if you get a prescription for it, your insurance company will pick up the tab. I only pay about $32.00 per 24 can case at Walgreens. That's only $5.00 a day for 2000 calories. Click on this link:

http://www.nestle-nutrition.com/family.aspx?objectID=86E49EB3-BE25-4B16-81D7-235E6F6E5183

Under the PURCHASE PRODUCTS tab, select FIND A PHARMACY NEAR YOU.

Under the PRODUCT NAME pull down, select Carnation Instant Breakfast Lactose Free VHC and fill in your zip code and they will give you a list of pharmacies that carries it.

At the top of that list note the Product Code and NDC Number in case that helps you when you call the store. When I call Walgreens it only takes a day or 2 at the most to get it delivered to the store and they call me when it's in.

You can also order it online but it usually costs more and takes much longer to get.

No, I do not work for the company nor do I get a commission (I wish) but this product made my feeding life during and post treatment much much easier and I am sure it will do the same for you.

Keep on posting. We that have been down your path are here to show you the best route.

Well another set back, the peg tub was not placed correctly , so now they have taking it out. I get to go all through it again tommorrow. Hopefully, I won't have the same proublems. Thanks for the info on the Carnation Instant VHC. the nutritionist has put me on it . I lost 10 pounds last week. But do to my size I have to drink 6 cans a day and even though it does not taste to bad, it is still not that good anybody have any good mixing ideas to not get bored with flavor to quick,since it looks like I still have 5 weeks to look forward to this wonderful drink lol. but I guess you have to do what you have to do. The Dr. has gave me a scrip for it, but so far no luck on finding a pharmacy to fill it and send it into insurence, but will keep trying . I did how ever find a site on the web call MED.com and was able to order 2 cases (8 day Supply) for 27.24 each plus 11.13 for shipping of course lol . But at lest it will get me started, Thanks for all the info and will talk again soon.

David

david,

I mix mine now with about 4 ozs of whole milk but during the rough times I swallowed it from a room temp can, the faster the better.

You say you "still have 5 weeks to look forward to this wonderful drink"...I'm almost 10 months out and I still drink 1 can a day so you better count on at least 1 month past treatment.

Don't you have Walgreens or CVS pharmacies near you? If so, you can get VHC from them.

David, check to see if Apria Home Health Care centers have locations in your area. We got our Nutren- same company who makes VHC- through them. You could try mixing ice cream toppings in different flavors with your VHC for variety. Or since it is summertime- purree fresh strawberries, blueberries, peaches, kiwi, etc. into the VHC. Hang in there. Amy in the OZarks

id I went in to get the peg tube put back in, but they could not get the light to shine though thre stomach, so after a half a day they gave up and decided to go from the outside using the ct scan and trying to feed the wire from the outside. Well that did not work either because where my stomach got smaller after losing 10 lbs last week. They did however managed to get air in between my stomach and stomach lining. They said that I will be fine because it did not get into the blood vessels and the air will disapate in time, it just causes alot of cramping. But other than that still pushing forward with all your help.

well DavidCPA I went to the cemo Dr. he wants to treat it with 4TR cisplatin or 2 TR of something called equlixpin I spelled it wrong , but he did not write it down. He said it was a type of cemo they use on colin cancer, but their has been 1 study that shows it works on tonsil and noyds in the neck, plus not as amany side effects as the cisplation. He agrees with all the other Drs that thius is a mop up operation, but they say you don't bring a water gun to a war. you bring the best you got , so I guess I will have to see what research I can get quickly. to decide on which type of cemo. To everyone else thanks for the info on the mixes for the Carnation VHN, I am know mixing it with milk and syrups and it is going down and staying down so thanks and will also take any other tips. thanks to everyone on the site

going with the Erbitux

well 5 more radx and 2 Erbitux, No side effect from the cemo part yet. YEA. Everything else is going ok lost only 3 more pounds since the decision not to have the peg tube put back in still able to swallow the 4 cans of Carnation VHC breakfast drink and mixing it with whole milk and chocholte/strawberry syrup is working. 20 oz working out to be enough calories to mantain weight so far, It finnaly looks like light at the end of the tunnel. Just wish mouth was not so sore and raw. But I guess that is why they say you have to battle the cancer. Thanks to all

Hi Redbus,

Sounds like you are doing well...I'm happy for you that you are nearing the home stretch.

Did you get a rash from the Erbitux? My husband has it all over his face, top of head, stomach and back. We have tried a variety of creams as the rash causes him some discomfort...I am curious if that was an issue for you and if there was a cream that you preferred.

Margaret

So far only place of rash is on chest, or so I think Have not checked head, not been a proublem so far but will keep you informed, what did you use for rash

Margaret,

Regarding the Erbitux rash (i.e., pimples), I had it very bad, even going inside my nose - made the radiation mask very uncomfortable.

The final resolution was daily steroids and oral antibiotics, which were very effective (you can find the specifics on one of my previous posts). I had an antibiotic cream, but I don't think it was very helpful and ended up not using it much.

Best wishes,

Chris

My husband has been on both antibiotics and steroids but it didn't seem to help. It's tough when they aggrevate that skin that is under the mask.

Now he is using Biofine. It's an Rx burn creme. He's using it because the pimples on his face have turned into very, very dry patches that are also uncomfortable.

I thought it was only going to be a cosmetic thing...who wants a pimple-y rash when they are in their 40's? But, it was a little more painful than he anticipated. Manageable pain, but hard with the mask.

A humidifier also seemed to help a little too. Although the rash is clearing up on his face...his back and neck are almost one gigantic rash.

Chris, how are you feeling now...9 months post treatment?

Margaret

I checked the scalp and yea I have it their, I went for treatment today and ask them what I should do. They said the best thing they have found is, Going to sound strange, but they said use head and shoulders as a body wash in all the areas of the rash and to make sure you do not rub it dry that you pat the area dry, They also sais that they do have some creams on the market, but this has had the best results for their people. They also said that they have had to skip a treatment before because of the rash, to give the skin a chance to calm down, but not to stop, because it is a good treatment, Well hope this helps. I know I will be trying it on my cheast, back and head, good luck and God Bless

Head and Shoulder's Shampoo gave John relief from the rash [and he also had to skip a tx or 2 during his Erbitux, but he was on it for over 7 months. He was also told to NEVER rub his skin dry but to pat it. amy in Oz

I've picked up the H&S shampoo...thanks, that isn't something I heard from his medical team. His rash is really settling down now at the end of week 5. He has 2 more weeks to go...does the rash settle down and flair back up...or, when it goes down does it stay down?

Margaret, John's only went away when he stopped taking Erbitux- maybe someone else has a better experience. Amy in oz