Miss,

Welcome to OCF, glad you found us, sorry you had to. You've found the best site on the web for support and information about Oral Cancer and the treatment of.

First and foremost, as you've experienced this is a very painful experience and since pain is the enemy of healing as it puts the body in distress, proper pain management is important. Using Magic Mouthwash, a time released narcotic like Oxycontin or fentanyl (strongest opiate available) and then a breakthrough pain med like hydrocodone or oxy is pretty standard. As you are in California ask your Dr for a script for marijuana, however DON'T smoke it! Vaporize or inject it, it's helped many of on these forums with nausea, pain relief, appetite, anxiety etc.

As far as nutrition goes, experiment with juicing and a blenderized diet with protein powder. Nutrition and attitude are the only two things we can control through treatment and since roughly 20% of all cancer patients die of malnutrition (and I'm guessing that percentage is higher in OC due to it's nature) nutrition is very important.

The body releases hormones to activate the immune system to fight the cancer and repair the damage being done by treatment. This puts the body into a hyper metabolic state, burning through not only calories but fats and proteins too as it's throwing everything to the immune response. One of the side effects of the hormones released to activate the immune system is it hinders digestion and absorption making it more difficult for your body to absorb enough nutrients. This is where nutrition is important.

Vitamins, minerals from fruits, vegetables and whole foods are easier to digest than the isolates used in Boost, Ensure and the Carnation drinks. Typically these sources are high in sugar (throwing off your already spotty blood sugar levels due to the elevated cortisol production caused by the stress of the cancer experience) and this further hinders absorption. Your body quickly begins to breakdown it's own lean muscle mass for the needed amino acids for the immune response which is why cancer patients experience weight loss outside of the nausea caused by the opiates and chemo drugs.

Blending and juicing allow you to introduce nutrients in a much quicker way than the isolate vitamins and minerals used in the Boost/Ensure etc, even though they are good for quick meals, they should be used for traveling etc and when convenience matters. Using walnuts, olive oil, coconut oil and other sources of mono and poly unsaturated fats will help with muscle retention (higher amount of fat in the diet equals higher testosterone levels in the body, helping maintain muscle mass) and are a concentrated source of much needed calories. Hydration is key however as it will help with the nausea levels caused by the drugs and higher fat diet.

Quick absorbing protein like Whey (fastest absorbing protein you can get) or a vegetable based powder if you have dietary restrictions like vegetarian/vegan diet. Upping your daily protein intake to between .77g-1g of protein per pound of body weight should do the trick, however again get plenty of water as the protein and the meds will make it hard on your kidneys.

Remember to plug into these forums for support, guard your attitude by reading uplifting inspiring books, listening to uplifting inspiring music and plugging into the amazing caregivers and survivors on these forums. This can be a tough experience and I firmly believe in strength in numbers.

Welcome my friend, and let us know how we can help

Eric

Not surprisingly, I don't really remember what it was to start.

But it went to 2 tablets 4x per day 'as needed' as the pain got worse. I don't know how much was in a tablet.

By then I was using the Restoralax, so it was OK in the lower pain department. But I really wish the first Doc had been warned me about constipation - I'd never had it before and hopefully never again. Hence my concern for you and your BMs.

Like Christine and Cheryl said - keep us posted OK? (Not on your BMs, but on your results) But BMs are OK here too.

Hi, Brittany.

I'm sorry for the pain and troubles you've been having. I'm also sorry that your dentist didn't feel the need to refer you to a proper medical specialist for the tumour (oral surgeon or ENT/head and neck oncologist).

You said that you have a nine month old. Congratulations! I know how difficult it is to be in so much pain and have to take care of young ones, let alone an infant. Please call in all of the help you can get from friends or family.

Another thing that I am thinking...you said that you've had this tumour for 6 years. Oral cancer tends to be fast moving...it would kill far more quickly than that. Also, did it get larger when you were pregnant? I was pregnant when I was diagnosed and treated for OC. Some tumours are hormone-sensitive, and it seems for a greater number of women, these things either erupt during or shortly after pregnancy or if they were there in the first place, they grow during pregnancy. Not all of the tumours are cancerous. For example, parotid tumours tend to grow more quickly when you are pregnant, yet 80% of theses tumours are benign.

It's just something to think about. You will find out for sure tomorrow. I am hoping and wishing that this is NOT cancer. Since the tumour has eroded some of the nasal bone, you still may require treatment, but as long as it's not cancer, you can deal with the pain and be done with it! No matter what the results tell you, we are here for you. You will get through this with help from the people in this forum and friends/family. I know it's hard not to think the worst...many of us have been there, but there have been those who came out all clear after their biopsies. I'm hoping for you and your family that this will be the case!

Please keep us posted as you are able. I hope that you and your doctors are able to get your pain under control.

With love and care,
Kerri

Okay so my dr told me i may have acc but they ate going to send my biopsy to a different hospital in san fransico to get a second opinion. Im really lost. Idk how they arent sure. So looks like ill be waiting another two weeks.

I'm sorry you have to wait again, Brittany. I did a quick search on acc, and it seems to rare and hard to diagnose. It is probably the best thing to get a second opinion on the diagnosis.
I hope that you are having some luck with getting some nutrition in and keeping busy during the wait.
Maria

Thank u all so much the pain has come down alot so i can eat soup and drink ensures. Takin the pain meds are still a challenge to get down. But i am doing better. I need to do some research my self on acc i am still hopeful that it wontcome back as cancer. Since he did not give me a definate dx. Thank u all so much for your advice and kind words it really helped and meant alot to me i will keep you all updated when i find out more information.

I am very glad to hear that the pain is better and you can manage liquids. You can make a great protein shake with carnation instant breakfast powder, canned fruit (peaches work well), milk, whey powder and cooked oatmeal. Blend it all together - add as much milk as you need to make it thin enough to drink. Your kids will like it, too!
Maria

Fingers crossed for you. And push them to hurry! Hugs!

Hang in there, Brittany! Fingers, toes, arms, legs, and eyelashes crossed for you!