Hello all. My name is Charlotte. I am 51 years old. About 8 months ago, I noticed a lump on the roof of my mouth. I have sjogrens syndrome and at first I thought it was a swollen gland. I finally mentioned it to my pcp and upon examination sent me to an ENT. He sent me for a ct with contrast that day and then after the radiologist did the reading, he called me in for a biopsy. It had a milky looking mucus substance that was sent off along with a tissue sample. The results came back as Mucoepidermoid Carcinoma of the right upper palate. I had to have it surgically removed a week ago. It seemed to go ok and I only had to stay one night. The ENT removed the screw from the prosthetic and the packing 2 days ago and the oral surgeon had to adjust it. Since then, I am having constant swelling and pain. My diet consists of jello, yogart, pudding and soup broth. I have lost 17 pounds in one week. They had to put me on lortab elixer for pain since tablets will not go down. I'm looking for someone who has gone through this and for any suggestions on diet and keeping the pain down. My husband has been doing everything he can to help. Thank you in advance for any help or ideas. I am hoping I can help someone that is going through this one day!

Hi CharlotteL, and welcome to OCF!

I am very glad you found the forum, as it is a wonderful place and people here are very supportive and knowledgeable.

I am pretty fresh here and don't know much, I am sure more knowledgeable people will chime in soon. Have you talked to your ENT about this recent developments? it seemed to me that he should be able to prescribe at least something to deal with the pain.

Bets of luck!

Hi Charlotte:

Welcome to the family. This group is way bigger than just a forum. We are all brothers and sisters in the biggest roller coaster event many of us will ever face in life.

I wish I knew more about your cancer type. Mine is SCC (squamous cell cancer), simple compared to yours. But, regardless of the complexity, you have found a group of kindred souls, people who understand what you are going through because in one way or another we are all going through it too.

So, keep the faith. I know it's hard on you right now as there is so much unknown with a new cancer. This group will help you get past that unknown; there is a lot of knowledge here. And once you get past that unknown, you will start to sleep better.

You might as well go to MyStuff, Edit Profile and fill out a signature line about yourself. It helps others keep up with you and your case without having to re-read every post you make. Others will ask you to do it too.

Charlotte, this family is all about support, giving you strength when you need it and celebrating your good news when you get it. so, tell us what you need.

Welcome to the family.

Tony

Hi Charlotte - sometimes healing takes a while - you've had surgery - so pain is to be expected. There are a few here who've had your cancer hopefully one of them will be along to offer more specific advice. Welcome

Hi Charlotte,
I was dx with MEC of the sub-lingual salivary gland in May 2013. I had my RT submandibular gland in my neck removed. As well as a portion of my sub-lingual gland where my tumor was located under my tongue removed. It's been 5 months and I still have swelling and discomfort. Don't get me wrong it has gotten better but it's still tender. I also take lortab elixir for pain. But I found that ibuprofen (800mg) helps better. Maybe because it's an anti-inflammatory. Swallowing has gotten better but in the beginning I was on all liquids. Once improved I started on a mechanical soft diet. This consisted of the foods you are eating now and also included finely chopped/minced/puree meat smothered in sauce or gravy. You can use a food processor to chop up your meat and vegetables. The Dr. also prescribed me something called "Magic Mouthwash" which isn't a mouthwash at all. It's a numbing solution that you swish around in your mouth and then swallow. This helped with the pain from eating and taking meds. Although I'm back on a normal diet, I still have problems swallowing. I eat very slow and take tiny bites. It also help to alternate a bite of food with a sip of a drink. On a side note, I am familiar with sjogrens symdrome. I have lupus with sicca symptoms. Dry eyes, skin, nose, and mouth. I tested negative for sjogrens though. Radiation only made this worse. Do you have to take radiation or any other treatment? I hope everything works out for you and that you find this to be helpful. God Bless You!

RE the weight loss. You may want to try and order Boost VHC from a local pharmacy like Walgreens or over the internet from Amazon. These are small 8 oz cans that pack a whopping 560 cals. Have to buy it by the case but 4 or 5 a day is all you need to keep up until your regular eating can resume. You can not afford to continue to loose weight.

Hello Kimberly! Thank you for your reply, advice and encouragement. I too have lupus sle secondary to the sjogrens syndrome. I did fine in the hospital, but I was getting my pain meds through my iv. I am 10 days out since surgery and the doctor called in lortab elixer since the pill form was getting stuck in my throat. It seems to help some. I need to call the surgeon and oral surgeon back on Monday to get the rest of my questions answered. The oral surgeon had to adjust the prosthetic last week and it is very uncomfortable now. It is too tight and making it hard to wear. I am so sorry to hear you are going through all of this too. I have never posted on a support site outside of facebook, so I need to take some time and try to figure everything out! I will get my info updated and I appreciate all of the replies. I hope you are having a good weekend. May God bless you too!

Hello Ambra! Thank you for your reply. I am still trying to find my way around here, hopefully, i can figure it out soon. I hate to hear that so many others have and are going through the same and very similar health issues. I hope that I will be able to help out others soon! My ENT has been vague about everything and of coarse I don't have a question until I am home and a new problem occurs! I am going to call his nurse on Monday and try to get my prosthetic re-adjusted too. I hope you are able to enjoy the rest of your weekend. May God bless you.