Hi All - I am newly diagnosed with SCC to my left tonsil and one left lymph node, with initial testing indicating HPV+. I have met with my Medical Ongologist and will meet with the RO next week. Radiation treatment is expected to be daily for 7 weeks. Chemo is to be either Cisplatin (once every 21 days) or Taxol and Carboplatin (once a week for 7 weeks). The MO says he is leaning toward the Taxol/Carbo as the Cisplatin is very hard to tolerate, but the decision will be made by the full team.

I am wondering what the "Gold" standard of care is for Tonsil SCC? My searching finds mention the above drugs as well as several others (5-FU, etc.)

Also, the MO prefers NOT to put in a peg tube at this time; says we can put one in if I need it. My surgical oncologist recommends putting it in before treatment begins. I am a small framed woman - 56 years, 110 pounds - and really worry about not being able to maintain my health if the throat issues are as bad as I have read. Any and all thoughts/suggestions/experiences would be helpful.

Thanks!!
Nancy

Sorry for your diagnosis, but welcome, Nancy. There are many mono and combination chemo treatments, but Cisplatin is the gold standard with chemoradiation, but alternatives are used if the patient already had it, has kidney damage, can't tolerate it, etc, and carboplatin is used frequently as an alternate to Cisplatin with less toxicities, and almost as good results. Weekly Cisplatin infusions are better tolerated than the large 3 bag method, as well as other chemo's. There is also Induction Chemo Therapy, usually 2 or 3 times, 5 day infusions three weeks apart with high dose Taxotere, Cispatin and 5-FU as neoadjunt treatment, before the standard 7 weeks of chemoradiation, but is controversial with some doctors, has high toxicities, but studies show it responds well with HPV, and is organ preserving instead of having surgery. Erbitux, a monoclonal antibody, is popular, as well as controversial, but studies are not complete comparing it to Cisplatin, and read a recent article from MSKCC, that mybe it should not replace Cisplatin anytime soon as the gold standard, and recommendation from them it not be used as mono treatment. Being HPV positive is a good thing for this type of cancer, which responds well to chemoradiation, and Induction Chemo, but chemo alone is not curative for our cancer.

There are several things to consider for a peg tube, and I'm for it. If you can't afford to lose 20 lbs maybe one should be be considered. If you loose too much weight, usually more than 10 percent of your body weight, doctors get concerned, 20 percent, and radiation may need be interupted to make a new mask. You do not want to stop radiation once it starts, which reduces its effectivenss, and how one does during treatment health wise, completing full treatment as prescribed, maintaining current weight, has an effect on your prognosis, and overall survival. Chemoradiation at the same time is like adding two additional Grays (Gy), measurement of radiation dosage, to you total radiation. You may get radiation bilaterally, depending in involvement, tumor grade, and mine included BOT, Valleculla, which will make eating, and swallowing more difficult than having it on one side. If enternal feeding, like g-tube or j-tube is needed during treatment, it may be stopped, and surgery runs the risk of infection with a lowered immune system from the chemo, although a nasal tube can be used, but I heard it's very uncomfortable.

There are more answers to your questions, and others may contribute, but hope you find this helpful.

Hi Nancy!

There have been many heated discussions about PEG tubes. Its a very personal decision. Im very pro-PEG but there are many who are anti-PEG too. I feel its always much better to be prepared and have this tool there before you need it than to have to wait for an emergency surgery when you are feeling awful and struggling with nutrition. Some members sail right thru without needing a tube while others need it right from the start. There is always the nasal tube as an option too.

Take some time to educate yourself by reading this site. You will find all kinds of important info not just here but also on the main OCF pages. There are treatment protocols which are made by the NCCN which your treatment center should be going by.
NCCN Treatment Protocols

Nutrition will be a huge factor in how easily you get thru this. Every single day you will need 2500 calories and 48 oz of water, minimum! I know it sounds like its too much but this is the least you should be taking in. Your age will hopefully help you get thru it easier too.

Get a full blood count including thyroid. See your dentist and get fluoride trays made any teeth pulled which are not in good shape. Get your hearing checked.

Always take someone with you to doctor appointments. Read here and on the main OCF pages and educate yourself. Line up friends and family. Anyone who offers to help write down their name and number and tell them when the time comes you will contact them.

Best wishes with everything you are facing!

Nancy,

I finished treatment 7 weeks ago and will have my PEG tube removed tomorrow. I would not have made it straight through treatment without the peg. You do not need the peg tube now and getting one is not a big deal. However it does take a week depending on doc availability. About 4 weeks in, eating becomes very painful. My advice is make the call week 4 and error on the side of getting it. Also the worst effects are the three weeks after Rads are done.

You will need a lot of help starting right now. Make sure you can call for help at all times from now until 6 weeks after Rads.

Write stuff down. Its so easy to make mistakes with meds. I made a log sheet with dates, time, and drug.

Put war paint on. This treatment is hard. One day at a time and you will get through it. Good luck.

Hi Nancy and welcome. Sorry you have to be here but without a doubt this is the best place for up to date information and support. I would have never mentally survived without these incredible people when my husband was sick.

My husband had base of tongue cancer with node involvement. The treatment for his type of cancer and your type of cancer are usually the same. My husband had the weekly Cisplatin and unfortunately has permanent hearing loss from it. When my husband was diagnosed with his cancer his MO, RO and ENT all recommended getting the PEG placed before treatments began. They didn't want anything to stop treatments once they started. My husband really fought me on getting the PEG. I told him to just get it "in case" and hopefully you won't need it.

Thankfully he got it. The first couple of weeks were o.k. but after that things got really bad. He still didn't use the PEG when he should have and lost 30 lbs. Eventually he used the PEG and that helped to keep him hydrated and nourished. He used a pump to slowly get the hydration and nutrition in. He continued to swallow water daily so he wouldn't loose the ability to swallow. He never had to be hospitalized due to dehydration.

You will get different opinions about the PEG but to me it is just another "tool" to get you through treatments. After all that is the goal to get through treatments and be cancer free.

We are all here for you! Good luck

Nancy

Getting a PEG is a personal decision. Your MO is probably worried that you will negatively impact your ability to swallow as some people with a PEG just quit swallowing due to the pain which does cause a longer recovery. But if you want one, you are within your rights to push back and demand one now. Just remember to try and eat as long as possible and always keep swallowing at least water several times a day. Your surgical oncologist sounds like the doctor to ask to set that up for you.
Going thru this without a PEG requires major personal motivation, and a sense of psychological satisfaction from not getting a feeding tube. I had both so I had no problem doing without a PEG. But if you don't have both of those issues, then I'd recommend getting a PEG. It appears to me that mostly "older" guys like myself and Michael Douglas are so adamant on not getting a feeding tube, while most female patients don't feel it's any type of defeat or stigma. I used to dread these type of questions back when the pegophiles ruled OCF and insisted that not getting one was foolish and medically contraindicated, but now there is a civilized dialog acknowledging the personal nature of the decision. Turns out the "medical" necessity is not accepted by many ROs and MOs while some insist on it. The PEG does have hassles like leakage, etc and some people have more problems with it then others. It's your decision to make
Charm

I found my PEG to be a great tool in helping me do my part in effectively getting through TX.

I've always been baffled by the psychological satisfaction some people seem to get by going through this without a PEG.

Maintaining good hydration is an absolute necessity and without the PEG I doubt I could have. Even with the PEG, in the last week I had a bad spell and couldn't keep anything down. Within just a few days I needed IV's.

A PEG will likely help you keep you weight up. Excessive weight loss requires not just a new mask, but re-imaging and re-planning to maintain optimal RT. Too often this doesn't happen leading to a sub-optimal TX.

Breaks in treatments (particularly early on) often lead to significant cancer cell regeneration and can increase the risk of recurrence.

If your team is confident they can manage your treatment without a PEG, and if necessary insert one timely with no break in your treatment schedule then it should be fine, but if you end up missing many treatment sessions, don't be fooled into thinking they can just tack those on at the end and achieve as effective a results.

Hi Nancy

The trouble with oral and oropharyngeal cancer is that the gold standard shifts depending on size of tumour, region of tumour, as well as the person themself.

I think the one thing that is agreed is that a dose of a cytotoxic agent (chemo) such as cisplatin in combination with radiation (chemoradiation) is better than radiation alone. However, some patients have radiation alone because the size of the tumour and the predicted involvement of the lymph nodes is minimal.

Back to your question regarding "gold standard": cisplatin plus radiation is the best studied combination so might be considered the closest thing we have to "gold standard" (personally I don't think the term is applicable in oncology where so many combinations are dependent on an individual need). There are also many who think that carboplatin is just as good - it just hasn't been studied as much. Docetaxol added to cisplatin and 5FU BEFORE radiation was found to be very effective which lead to the concept that adding Taxol (which is related to docetaxol) to radiation DURING radiation must also be good. Sometimes the doctors need to make some educated guesses because the trial to prove one way or the other hasn't been done yet or only small trials have been done that are suggestive of a good result.

Your second question regarding a PEG:
Once chemoradiation starts, an operation to install a PEG becomes more problematic as healing would be slower. Here in Australia the procedure is done under anaesthetic and a raw and swollen throat from radiation would cause problems with inserting tubes for breathing as well as the PEG itself (although there is one it can be introduced through the abdomen wall rather than down the throat). This is why your surgeon is concerned because he is the one who will have to deal with any fall out - not your MO. My suggestion would be to consider how much weight you can afford to lose and if the answer is "not much", - get the PEG. If you are reasonably confident that you have enough stores on board to get you through, and you are doggedly committed to eating, and drinking then you may consider trying without.

The reason the MO is suggesting no PEG is because trials have shown people can become quite dependent on a PEG. After going through it with Alex, I think the doctors underestimate what is involved in eating and to suggest a patient would stay on a PEG any longer than is necessary makes no sense to me. The patient must be made aware, however, that swallowing exercises need to be practiced to avoid loss of function or even speed up return of function.

It is not a fun thing to do.

Alex was one of the "dependent" patients and had his for 18 months. It is true that he refused to have it removed for about 3 months beyond when he needed it. He didn't actually use it but wanted it left for a while "in case". I think it was almost a superstitious thing and he was fearful that the cancer would come back the second he got it removed.

Nancy,

To PEG or not to PEG. That seems to be the longstanding debate for at least the 9+ years I have been hanging around this neighborhood. You have concerns so I think you have answered for yourself. On to another topic.

Are you being treated at a NCCN member institution? That would be most likely Dana Farber or Sloan Kettering in NY since you are from MA. I don't know your resources or distance from a NCCN member but I would strongly encourage you to seek at least a second opinion from one. They set the treatment guidelines and they do the most research. Hearing you have two of your team diametrically opposed to a PEG is unsettling to me. If you hear two different opinions on this issue I would understand your confusion.

Cancer treatment, unfortunately, is not a one size fits all although it has yet to be determined what the true individual differences are in regard to how the treatment affects us in terms of killing the disease and/or longer term issues related to treatment. Take every opportunity along this journey to participate in data gathering for any research projects you can because that is a benefit for any that travel this road after you.

You have gotten some great information from great people that have traveled this bumpy road ahead of you. It is so tough to digest it all as you are preparing for the newness and difficulties ahead. I would tell you a couple of things I believe are key. As mentioned, if your mask feels loose, MAKE THEM REFIT A NEW ONE! This was my biggest mistake and my single most biggest regret that I cannot fix now. It should be standard practice but is not. I lost almost 50% of my weight and complained about my concerns the entire last half of treatment but went with what the experts said. Second, if the mask feels warm on your neck during treatment, have them cut away the portion on your neck. This is done by some but not a standard. Number three, DO NOT put any creams, lotions, gels or anything on your neck before each treatment no matter what they say. You can deal with issues like dryness with aloe, aquafor, lotion or whatever you like to moisturize later in the day but keep your skin clean and clear before treatment and even a while after. Nobody knows how radiation will react to foreign stuff. Protect your neck because it will be your best friend and worst enemy after treatment I personally believe forever!

Everyone is here to provide information and more important, support for you. Come here often to share your successes, your fears, your raw emotions or whatever you want. We are over 8,000 strong and here for you as you will be for others when you emerge on the other side of treatment. Water is your friend and a minimum rule of thumb is weight in pounds divided by two in ounces of water. Our body is 60%-80% water, depending on tissue or organs and water will be with you for life now as it should be. Just consider yourself to have a personal water meter now and this will make much more sense later. Don't worry about the million "what-ifs" because it isn't so until they prove it. Take time to MAKE THE MEMORIES as there will be fun days and those memories will help you through the roughest days after treatment.

Best wishes for the medical team you choose to find not only the best possible course of treatment for you but to educate you on longer term management of side effects!

Dream big and may all your dreams come true.

Ed

My diagnosis was very similar to yours and I underwent 35 rad treatments concurrent with Cisplatin weekly. Subsequent CT scan (November 2012) was very promising. PE scan is in two weeks.

Both the ENT, medical oncologist and the rad/oncologist were emphatic on the PEG tube. I was having swallowing problems before treatment started but at about week three I could no longer tolerate the pain. It was excruciating. None of the doctors told me to continue swallowing water or other liquids in small amounts so I relied totally on the PEG tube. I lost about 25 pounds (about 17% of body weight). Without the PEG tube I would have been hospitalized for dehydration and/ or nutrition. Unfortunately after my throat healed somewhat I tried to swallow and nothing went down. So I am now looking into treatment to help me return to at least some semblence of normal swallowing. My doctor said large base of tongue tumors often result in swallowing difficulties and I sure have them.

My very best to you. It's no "stroll ine park"...just take a day at a time.

y advice is to get the PEG and swallow as long as you possibly can and then some. You are not a large person and you would not want to interrupt your treatment because of dehydration and/or nourishment issues. The PEG tube is a relatively minor invonvenience when you consider the seriousness of these head and neck cancers.

Best wishes,
Mr Mike