2 months ago I had throat and neck surgery to remove lymph node and tongue/throat cancer (stage 3). Luckily all was removed, but the surgeon recommended 27 LDRT Radiation treatments, which I am currently in, and have completed almost 1/2.

After the surgeries, swallowing and eating was impossible but slowly improved, although speech isnt even 50% yet.

Now with the radiation 1/2 way through, it is slowly getting worse, and extremely sore, and back to the hard to eat and sleep like after surgery.

My question is, how many people with this type of neck/throat cancer who get surgery, actually also get radiation, and complete the radiation also?

Are there stats of people who just cant complete it? Throat hurts, neck sore and swollen, etc. etc.

Thank you

Welcome to OCF! You found the best place for info and support!

Treatment plans are very complicated. They are flow charts with many different options and variables considered. They are geared towards getting patients with similar diagnosis all the same treatment plans. I doubt there are stats available about how many patients drop out of rads. Im sure its a very low number of patients who dont complete their treatment plans. Actually, I was one who wanted to quit My son and nurses wouldnt hear of it. Rads isnt easy and it gets progressively more difficult as you go thru it. Off the top of my head I know of only 2 patients who stopped rads before the end. Sadly, I think only one of them is still alive.

I know its not easy! But with help you can do this. Almost all members have been thru rads. You have already gone thru so much, please reconsider quitting. I wouldnt want to see everything you have already done be for nothing. We are here to help you as much as possible.

The best thing you can do to help make this as easy as possible is to focus on your intake and pain management. If you can take in at least 2500-3000 calories and 48-64 oz of water every single day then you should feel a little better than if you are skimping on your intake. The key to this whole thing is how well you do with your intake.

I will post a great milkshake that will help make it much easier to hit your daily caloric intake minimums. Its probably easier to drink your calories. If necessary there is always a nasal feeding tube option. This will help to bypass your sore throat. Just no matter how sore your throat gets, please keep swallowing every single day even if its only tiny sips of water. Your swallowing muscles need to be kept working so they dont forget how to function.

There is always magic mouthwash to swish and spit before you try to eat. Ask your doc for a prescription. You can also ask for an open prescription to get extra hydration several times a week. After a couple bags of fluids you will feel so much better. This will help making hitting your minimums of water easier too.

Hang in there!!!! Theres lots of help here for you.

Hi Mike,

I would like to add my welcome.

You are already through surgery and halfway through radiation, that's quite a feat. Give yourself a pat on the back!

Radiation is tough but it helps to wipe out the cancer cells that might be floating around. Have you spoken to your medical team about the pain and the difficulty you are having with swallowing? They might prescribe pain medication and the magic mouthwash for you. These will help with the mouth sores and with eating. Radiation also makes one tired, so give yourself time to rest.

Do you have access to a therapist at your hospital? It will help if you can talk to someone there about feeling a bit discouraged.

We are all rooting for you. Focus on what you have already achieved.

I'm sure there are stats someplace as far as any treatment drop out rate, which is probably so variable due to the number of different type treatments and patients cancer, and seen a few numbers mentioned here and there, usually based on the study being read, but I have read facts as far as the negative effects of any unplanned stoppage or missed days of radiation in regards to reduction in overall survival to be around 1.7% for each day missed, usually after several days, which really can't be made up by tagging them on at the end. Stopping radiation can increase the speed of cancer proliferation. As many of my radiation oncologists said, once you start you can't stop unless it's planned or told to do so.

Here is one article:

http://www.news-medical.net/news/20...py-appointments-have-worse-outcomes.aspx

Good luck

Thank you all for your responses. Could I ask a couple follow up questions?

Yes he has prescribed and I am using Magic Mouthwash

1. As far as the dry mouth issues that happens, now 1/2 through and the mouth is dry using everything I can find, I wake up every hour or two because of this, is this normal and does the dry mouth get better? If so, how long after?

2. I see on a couple of your profiles "teeth out", sorry to see that, and I heard of radiation causing possible mouth issues, what are the causes and issues, and is this the norm or just a rare occurrence for "throat/base tongue" cancer? Or a specific cancer type?

3. My cancer is Squamous Cell Carcinoma, originating base tongue, that went to lymph node, with no known cause (no smoking/drinking/no family history, etc., and it was all left side. Just yesterday I had a white sore on the left side gum where he looked and said it was a fungus? So I have another mouth wash he said should knock it out in a day or two?

Now the right side of my throat is real sore, and my right lymph node feels sore....

Thanks again for reading

Hi Mike,

The dry mouth may persist until sometime after the completion of radiation. My husband used to carry around a bottle of water and a "spit cup." It did help somewhat. At night, a humidifier at the side of the bed can be helpful, too. Others have used Xylitol gum or cough drops. Unfortunately, my husband John didn't like them.

Radiation in the head and neck area will impact the salivary glands and that will impact dental health. Did you doctors send you for a thorough dental checkup before radiation started and were you fitted with fluoride trays? If you have the trays, please use them religiously. Tooth extraction after radiation may be a tad more difficult as there may be healing problems with the radiated tissues. It is a good idea for you to visit your dentist more often after radiation so that any problems that arise can be dealt with ASAP.

Is your tumor in the oral tongue or is it in the oropharynx (this used to be called throat cancer). My husband had orophrangeal cancer at the base of tongue. He never had tumors in the oral cavity, it was deep down in the throat. The reason I asked is orophrangeal cancer can be caused by the HPV virus. My husband was not a smoker and only a social drinker. The HPV virus is an STD. Most of the population come into contact with the HPV virus sometime in their lives, and their bodies are able to clear it without medical intervention. A small percentage of people are unable to clear the virus and it developes into cancer decades later. When you had your biopsy, did your doctor check for HPV status?

You may want to have a read of the page on The HPV Connection on the main OCF website, here

http://www.oralcancerfoundation.org/HPV/

I'm sorry for your troubles Mike, and hope to answer some of your questions.

1. Dry mouth may improve over time when the salivary glands recover and or others compensate for its loss, but it can take two years to partially recover. As for myself, I'm almost 7 years from my first chemo treatment, which caused just as bad, if not more acute dry mouth, than radiation did, but the radiation I had, 5x, caused more long term dry mouth, which is a normal process with our type cancer in the oropharynx, including oral cancer, and others, due to the major and minor salivary glands being compromised. Toxicities are also based on the locations where radiated, the dosage, frequency, duration, radiated one or both sides, lymph levels spared, with or without chemo, etc, so it can vary with each patient, cancer type. There are prescription medications, OTC products, and others like humidifier, snoring strap to reduce moisture loss, acupuncture, to help with dry mouth, which can be discussed further or by checking the OCF treatment pages which is very comprehensive.

2. Everyone, at they least should, have dental clearance before starting treatment, and any teeth that can't be repaired are usually removed to help prevent problems during and after treatment (infection, ORN) including dental guards, prescription fluoride, instruction for impeccable oral care. Even with that dental problems can sill occur due to the effects of radiation to the salivary glands, and gums, teeth. I had two cavities filled, one root canal and one tooth extraction before starting radiation in 2011. In less than a year there was rampant caries due to teeth demineralization, and somewhat blame certain medications, vomiting, GERD, restrictive diet, including time to swallow, in the destruction of my 29 remaining teeth needing to be extracted. The extraction, an injury, resulted in ORN, need for HBOT, and further surgery, which can be worse than the initial cancer treatment, so this is one area you want to try to take care of.

3. Fungal infections, thrush, occur due to the dry mouth and compromised immune system that can't control the mouth flora, basically an out of control yeast infection. Sounds like you may have been prescribed nystatin rinse for localized treatment. Sometimes systemic treatment is needed with diflucan, clotrimazole oral pills, impeccable oral care, rinsing, which is easily treatable, if not, it can go systemic through the blood system through an ulcer, gums, which happened to me, and is difficult to treat, and worse. Magic mouthwash is usually for mucocitis or thrush pain. There are so many different combinations with 4-5 ingredients that some may have nystatin included, but not all. Magic mouthwash is usually for pain to help eat, although instructions may say not to a least 20-30 minutes, and enable to brush my teeth. Antifungal, antibiotics or antiviral medications are used appropriately to treat each different type of infection.

Have they tested for HPV, which effects about 70%, if not more in certain counties, of oropharynx cancers, mainly the tonsil and base of tongue.

I have base of tongue/tonsil, and the check for HPV came up negative.

I was required to see the dentist before radiation, and that came back good as well, no trays prescribed.

The teeth removal was more of a what happened question, as I heard radiation causes problems, but I was just worried if it was common or not, and did it always or rarely result in removal.

Thank you

Hi Mike,

I believe this page on the main website will answer your questions about the dental problems:

http://www.oralcancerfoundation.org/dental/dental-complications.htm

Are you using flouride trays? Your post sounds like your dentist did not give them to you.

OCF main site --- pretreatment dental

As far as the dry mouth goes, what you are experiencing is normal. Many patients have dry mouth issues while going thru rads. The dry mouth you see talked about on our forum is probably something patients encounter during their recovery. This is temporary but can last for months and be annoying. Using a humidifier can help. Some find gum with xylitol helpful. Others use some lozenges that they stick to the roof of their mouth and it slowly dissolves. The rinses for dry mouth dont always work as well as they advertise.

Having teeth removed after rads brings a whole new set of possible problems. After rads a patients healing is compromised and they could run into some major issues (dry socket, ORN or osteoradionecrosis, means death of the jawbone) from the drawn out healing. If a patient needs teeth removed that should be done prior to starting rads. The best option would be removing teeth at least a couple weeks before rads so the mouth has healing time before starting radiation.

Hang in there!!! You have passed the half way point

Dentist didnt give me trays nor did he mention them either.

I will try the gum, thank you

Someone mentioned Neutrosol and my Dr Prescribed it, sent it to my Target/CVS, but they dont have it nor can they order it.

Is this something a medical supply company would fill? Since you mentioned it was prescription formula, to me it sounds like it could be something primarily used by feeding tube patients? Our site has members from all over the world. Maybe its used in another country? I suggest trying over the counter boost very high calorie. It can be easily ordered by clicking on the Amazon box shown near the top right of the page. OCF gets a small kickback (zero extra cost to you) when you click on that box before going to Amazon. Its better than their Operation Smile donation.

The link I sent last night explains why OC patients need to have dental trays and fluoride. Im not aware of any recent changes where patients dont use them anymore. Being over half way thru I dont know if you are able to get them now? Its not possible to go back in time and make changes but you maybe its possible to do something after you finish rads. Heres more in depth info....

NIH -- -- Oral complications of radiation

I understand NeutraSal has distribution problems, and instead of this there is a similar product called, SalivaMax, same ingredients from what I see, which is supposed to work the same for dry mouth, mucocitus as NeutraSal, which I used with my last treatment, and found it helpful, convenient, and not off tasting as the salt water/baking soda rinse is, plus some studies said it worked better.

http://www.salivamax.com/

Mike can you please clarify if you were talking about Neutrosol or NeutraSal? Is it a nutritional drink or for dry mouth? These 2 items are so closely spelled but they are 2 completely different things. I thought u meant Neutrosol and replied as such while Paul did the same for NeutraSal.


PS... I have used the Salivamax Paul suggested in the above post. It gave me some relief but it didnt do as much as I had hoped.

Mike, sounds as if you and I have similar experiences, albeit my cancer was most likely caused by HPV. But in terms of treatment I can readily identify with your distress.

All I can tell you is that it will get better eventually. The posts here are from some of our most knowledgeable family members (you're in the family too now, btw) and I hope you've learned much from them.

If you don't have it already you might ask for some viscous lidocaine. It's a thick fluid that you swish around in your mouth, maybe gargle a bit if you can, and it numbs the area. This helps in getting food and liquid down. You didn't say whether or not you were (still) eating by mouth. But it's a good item to have on hand even if you're not, for water drinking.

Hang in there! You're halfway, and you've worked hard and endured a lot to get here. You deserve to see it all the way to the end and out the other side. We're all here to help.

Hang in there, Mike. I have 8 treatments left, and though I know from reading here that the side effects won't magically start to clear up right afterwards and may even worsen for a while, I am so looking forward to being done so I can start to heal.

Everyone here has been so helpful and supportive, and the information is invaluable. Don't give up. This is the only chance we have to get "right" the first time, which gives us the best chance of it not coming back. There's no guarantee it won't come back, but if it does, you don't want to be wondering if it wouldn't have if only you'd finished your rads.

People here have all sorts of information and help, and if you just need to vent or to know you're not alone, please do it and whatever else you need to keep going! And do talk to your team. As time has gone on and symptoms worsen, they keep coming up with ideas and products to make things just a little easier. Crushing pills is a Godsend, as I started gagging every time I tried to take one. Be sure to ask which ones you can crush, there are some you cannot. But being able to get a pain pill or Mucinex down when needed sure helps!

NeutraSal for Dry Mouth

hang in there bud, im one year out and never imagined I would feel better but I do its a marathon not a sprint you will feel better much better trust deeper