Tongue primary vs. tonsils and feeding tubes

Tongue Cancer Here
Jeepman,

I had Base of Tongue cancer over 6 years ago. I did have surgery to remove part of my tongue, radical neck disection, trache, and Peg tube. Neck disection involved the removal of the SCM muscle and over 30 lymphnodes. Radiation followed after a period of healing after the surgery. I had 7 weeks of Radiation. I was not given Chemo as the Surgeon and Radiation Oncologist wanted to keep that as my safety net in case the cancer returned.

I have a neighbor that had Tonsil cancer 14 years ago. He also had a Radical neck disection, 30 plus lymphnodes removed along with the SCM muscle. He too had 7 weeks of radiation with NO Chemo. He had the PEG Tube as well. Just so you know, he is doing great.

My Best to You and Everyone Here

Area called the Vallecula
My primary was diagnosed as being in the epiglottic vallecula which is at the root of the tongue in folds just before the throat. I had mets to 3 nodes and was coded stage 4. Six weeks rads with a double dose the last 6 treatments, erbitux once each week. No surgery or peg (probably should have, lost 50+lbs.) Now 17 months post original diagnosis and I grateful for my new normal.

My prayers are with you.

Ed

jeepman said:

Trying to figure out the acronyms
Deb,

What is IMRT radiation? I hear the Cisplatin is really tough, do you recommend the PEG tube? Where is in put in at? Was is difficult to keep clean, any issues with it? Was there adjustment for sleeping, positioning, etc?

I am expecting this to be the most challenging thing of my life, but I have a great wife and we WILL get through it.

Thanks for letting me ask the 100 questions,

Mike

Ask whatever you need to.
Mike

I think the acronym means Intensity Modulated Radiation Therapy, or something like that. It's very cutting edge, and my regional cancer center had just set up the same kind of treatment machine offered by U.C. San Francisco Cancer Center. I was told by someone else here that Cisplatin is considered to be the "raging bull" of the chemo world. It set me back on my butt pretty good. Anti-nausea meds kept me from puking my guts out, in the vernacular, but I still felt really lousy. Not sure what to say on the PEG tube. Some folks need it, some folks never do. My doctor didn't recommend it up front, but in hindsight, because I got a full bilateral blast of radiation, he said that he would recommend it from here on out. In my case, I mostly felt too sick to eat much owing to the chemo, and my mouth and throat were pretty toasted. So, I was happy to pour those little cans of liquid food into a feeding bag, and plut it into the pump, and just sit back and let it feed me. Actually started to put a bit of weight back on.

Installation of the feeding tube depends on what kind of tube you get. Folks here who got the "G tube" had it surgically installed and surgically removed. Mine was an outpatient procedure where they really didin't even anesthetize me. They go in the mouth, down the throat, into the stomach, and use a bright light from the inside to make a tiny incision and pop the tube through. I was in and out in an afternoon, and able to use the tube the same day. I found my tube really easy to use and easy to keep clean. Again, it depends on the type of tube you get. Mine was about 18 inches long, to facilitate using a pump for overnight feedings, had a cap on the end, and a clamp closer in to my body. If you're not careful about keeping the end of the tube up high when all the clamps are open, you can get a reverse siphon action happening, and whoops, there goes all the dinner. I got a wedge pillow, propped myself up at night and stayed on my side or my back. Kind of a pain in the ****, but otherwise, no real problems.

Deb

jeepman said:

Trying to figure out the acronyms
Deb,

What is IMRT radiation? I hear the Cisplatin is really tough, do you recommend the PEG tube? Where is in put in at? Was is difficult to keep clean, any issues with it? Was there adjustment for sleeping, positioning, etc?

I am expecting this to be the most challenging thing of my life, but I have a great wife and we WILL get through it.

Thanks for letting me ask the 100 questions,

Mike

IMRT ~ Tonsils Primary, Lymphnode Secondary
Here are a few Sites that explain IMRT very well...

IMRT - Mayo

IMRT - IRSA

IMRT - RadiologyInfo

As for the PEG, for a lot of people it is a necessity, for others like myself, not so much. A lot has to do with your general health and weight going in, not sure if pain threshold figures in the scenario or not.

I'm not any tougher than the next person, but I was well nourished going in at 6' and 275#. So while I was made aware of the PEG, it wasn't prescribed nor recommended. I lost around 45# total during my treatment.

I got through my treatment (nine weeks of Cisplatin, Taxotere and 5FU (via the port and pump)). That was in three week cycles, then seven weeks of weekly Carboplatin and daily radiation (35 days) with Amifostine Injections each day just prior to radiation.

I trusted my MD's wholeheartedly, they haven't steered me wrong in any phase of the treatment. They didn't prescribe or suggest it, I never had it, and it wasn't an issue. For some on here it was virtually a life saver for them.

Best,
John

jeepman said:

Gonna try the carnation b'fast drinks
Thanks for the reply. I am going to push for the PET ASAP, as I do want to know where the primary is. This will, as you stated, allow for less collateral damage once treatment begins. The radiation is gonna be the factor with swallowing ability, huh? I am going to just keep swallowing everyday too.

God bless you and your recovery.

Protein, protein, protein....need it for healing. I was 5'8", 140 lbs going in and lost 5 lbs during treatment and another 15 lbs my last week of treatment after getting pneumonia. I put it all back on within a few weeks.....stay active, get out as much as you can and do your best to stay off the couch....anything to help keep morale up, a positive state of mind will be your biggest asset during treatment. The Carnation instant breakfast is great but keep some ensure and boost on hand as they have a lot more protein and will help on the days when swallowing is a bit tougher....I had "weigh-in" twice a week and always had an extra boost drink on those mornings.....The Nutritionist should have a nice little package for you and will have some great reccomendations like "Unjury" and "Benecalorie" which have lots of protein and calories.
Dominic

Hi Mike. I was just
Hi Mike. I was just diagnosed with Stage IVa SCC as well. They believe the primary site was BOT but has now spread to right tonsil and part of my epiglottis as well as bilateral lymph nodes. My treatment is also slated to begin on May 2nd! The ENT said there was no surgical benefit at this point so I will be undergoing 7 weeks of IMRT with Cisplatin on weeks 1, 4, and 7. I am opting to have the PEG and will be having surgery tomorrow to have it and the mediport put in. Sounds like we might be on the same timeline on our journey. Good luck to you and your wife!

jeepman said:

Waiting for the 2nd...
Hi!

Elsa and I are hesitantly awaiting the 2nd of May. I do want to get my ball rolling, PET, PEG if needed, and get my schedule for the Dr's recommended sequencing of events. I wish all good things for you treatment and your family as your support.

I will keep in touch, please do the same. Prayers and blessings,

Mike

Hi Mike
I would say welcome to the site, but it seems a little too happy. I will just say I'm glad you found us here on csn, we can help you.
I had BOT cancer with two sites on my neck (left side). I had NO surgery, only RADS (36) and Cisplatin (6 times). I am now 13 months post treatment and am cancer free via PET scan. I had a feeding tube and recommenc it highly. I lost 25 lbs or so, started at 205. The feeding tube gave me my only nourishment during treatment. I drank water, gatorade, etc only. I had nausea from the start and puked my guts out mostly from the mucous that comes from rads. It comes as the body's way treating the burns in your mouth. The mucous a big deal for many on this site. I got a suction machine to clear my mouth constantly. You will spit alot if you don't have a machine. the mucous caused my nausea from swallowing it while napping. This won't come until the 3-6 week of treatment for rads but seems to affect all of us, just depends on quantity of it individually. Elsa will be your lifeline during this treatment. She'll have to take notes, get prescriptions, feed you, etc. You'll be very tired and even at a young age, you'll need help from a caregiver. She can make the trip through treatment better and more organized for you.
I wish you all the best as you start this treatment. I was 58 when I began treatment, and am now approaching 60 with good health and a happy attitude. You'll beat this terrible thing, trust me. Just keep your attitude positive and accept help from Elsa and others. you'll be glad you did and it helps them to help you.
All the best,
Steve

buzz99 said:

Get the PEG
Mike, my advice is to have the stomach tube inserted before treatment. You will tolerate the procedure much better and will heal faster. Buzz had the PEG pretreatment and we are so thankful he had it. He had a rough time with chemo and radiation and ended up needing tube feedings after the first chemo, before any radiation. He had two rounds of TPF chemo (Taxotere, Platinol [cisplatin], and 5 Fu). Then he had 33 rads with Erbutux chemo. Because of the tube, he lost very little weight and healed quickly from radiation. He finished treatment January 10 and is now eating 100% by mouth. You can get through this and we are here to help. Karen

Pain Management!
I believe when it comes to not getting a peg tube the important thing is pain management. I got a peg tube put in about half way through treatments because the pain became so bad I didn't want to swallow. However, I know some who didn't get a peg tube and they were fine because they had there pain management undercontrol. I would try without the peg; you can always have it placed during treatment and it is a easy procedure. I had my PEG taken out 2 months after treatment ended and it healed fast. Pain management should include: oxycodone, fentynal patches, magic mouthwash which varies from hospital to hospital, but it usually a benadryl/milk of magnesia/lidocaine suspension. Also,liquid mucinex helpes with the muccous. Also get a Rx of ativan it helps you relax; especially during the radiation treatments.

P.S. You can click on each persons profile and most likely they will have a summary of there diagnosis (DX) and treatment (TX).

Charles

Tonsil...
Wow! Everyone's advice is so good! I was diagnosed with SCC, primary tumor growing from my right tonsil on December 1st, 2010. By the time they actually decided there was a problem and sent me to Ear, Nose and throat, the cancer had spread to all my lymph nodes in my right side, my left tonsil and the lymph node right off of my left tonsil. I'm done with radiation (33 of them) and had chemo (only 2 Cysplatin as it affected my hearing a little bit and they felt that the benefits of doing the last one were less than the risks). The sore throat hit around 3 weeks into treatment, right after my first chemo. The PEG tube was a life saver. I could take nothing but small sips of water by mouth for about 6 weeks of treatment but I only lost about 25 lbs so the tube worked exactly like it was supposed to. I had a PEG tube placed a week and a half before treatment started (at my oncologists reccomendation) and I'm glad that I did as my body was so tired from everything else going on that it would have been harder to do it during. It's a minor procedure, small incision, worth it. I think that you could probably eat through the pain, but the combination of pain, no saliva, and no taste makes it almost impossible. The only way I can think to describe it would be to look at a picture of a turkey dinner in a magazine, tear it out and eat it. Same effect. I only lost hair from the radiation line (the back of my neck up to the tops of my ears), and my neck got VERY red, but they can give you zinc oxide cream to use as well as some over the counter creams (Aquaphor works GREAT) to help with it. Make sure you use them exactly as the doctor says so your skin doesn't break. Mine didn't. Mucus was a problem, but I was able to control it with constant sips of water. Mine was more disgusting than anything, didn't really choke me or anything like that. Herbal teas were great. Couldn't taste them but could smell them and that satisfies somewhat. I'm now 11 weeks out from radiation, my taste is about 75% back with sweet still being the missing one. About 2 weeks after I finished radiation, I started getting radiation blisters in my throat and on my tongue. I understand that this goes on for about 6 to 8 weeks normally, I'm still dealing with them but I guess I'm a lucky rare one . The magic mouthwash is great stuff, I've also found that once the blisters go away off of your tongue and they're just on your throat, put the mouthwash in a spray bottle (I emptied a chloroseptic one and filled it with it) and that way you can spray it directly onto your throat and miss your tongue (once you can actually start tasting again, you don't wanna numb those taste buds!) The most important thing is try to keep your spirits up, laugh as much as you can, try to keep your routine as normal as possible. Sleep when your body tells you to but not all day because then you're up all night, try to stay as active as possible. If you want to cry, do. It's ok to have a feel sorry for yourself moment, cancer sucks and it sucks that we have it,we don't deserve it. But we do have it, and after you get done feeling sorry for yourself, smile, and be thankful for all the good things that you have in your life that bless you. I listened to Christian music every morning before radiation so that while I was on that table in my "mask", I would have something running through my head to calm me so I wasn't focused on being strapped down. (The mask is a plastic mold they make of your head and neck that goes from the top of your head to the tops of your shoulders-it has lots of little holes in it and they make nose holes so you can breathe but you have a piece that goes into your mouth and it can be very confining. They put it over you and clamp it to the table during radiation so that you are in the exact same position and the beams are hitting the exact same spot every time). That's about all the advice I can give at this point. I have surgery May 17th so technically I'm still in treatment. If you have any other questions, please feel free to ask.....and I'll keep you in my prayers! Good luck!