Hi everyone. My name is Tracy. I have stage 2 Parotid Cancer (major salivary gland) - specifically Mucoepidermoid Carcinoma. I have been posting on another website and I very much enjoy it. I'm hoping to learn even more, find some more friends and share my experiences with others if they would help. I think this sad bond can be turned into a bond of friendship and compassion.

I just had my first RAD treatment yesterday. I am very claustrophobic so it was a little tough on me with the mask but with some Ativan and eye holes cut out, I got through it. I have stage 2 Parotid Cancer (Mucoepidermoid) so I am interested in ANY information from those that have gotten through the treatment or are still in it. My treatment area is much larger than I had thought originally. RO is treating from just above the top of my right ear, down along my face (where Parotid tumor was) and down to just past the lowest tip of my scar on my neck from the removal surgery! I have a large support group of generally UNsupportive people. My husband is stressed beyond his limit. He is sleeping all of his free time away to cope. I have 8 kids - 7 sons and then a daughter. My oldest is 29 and my daughter is only 12. My mother is alive, but highly unable to deal with this stress and continually changes the subject to talk about her own aches and pains and refuses to wear the Head and Neck Cancer support bracelet I made for her because she says "it makes it too much in her face." So, I am very fearful and alone generally and I really need to hear from and share info with people who understand what it's like to be going through all of this.

I have 30 treatments planned, but when I saw the RO today, he almost sounded as though he may add a few. My PET scan results came in after he had made my treatment plan. I have two tonsil beds that lit up and were termed "reactive". The RO examined them today and said that they look fine but need to be "watched" as this type of cancer often spreads to the tonsils/or their beds if they have been removed.

After ONE treatment, I am feeling some mild burning in the very back of my throat/base of my tongue. I find it very hard to believe that this could be the radiation treatment I just had because I have read and been told that the real issues develop between weeks 2 and 3 of treatment, but I have a distinct feeling of burning back there like when you swallow a piece of food that was too hot. Did anyone else feel effects right away or am I crazy?

Because of the size of my treatment area, I am thinking that I will likely have difficulty with swallowing, mouth sores as is typically seen but also I may lose the hearing in my right ear and the RO said that because my Parotid tumor started right at the very end of my jawbone, there is a need to irradiate that area, unfortunately. He wanted to try and avoid bone. So, I guess I can watch for osteonecrosis as well in the years to come.

I have baking soda and Celtic salt mouth rinse, Aloe vera for my face *after* treatments and a mouth spray I made out of Chamomile, Calendula and Sage oil to moisten my mouth, heal it and freshen it while I am healing. Anything else I should get and use right away? Oh -- I also made my own natural toothpaste without mint or fluoride.

THANK YOU for any help.
Tracy

Hi Tracy! Welcome to OCF! You have found the biggest and best source for correct medical info and advice. You will learn alot about your illness to help you become a strong advocate for yourself. We are here to help you get thru this!

You will find an unbelievable amount of info both here on the forum and on the main OCF pages. You can get to the main site by clicking on the tiny blue OCF Main in the upper left corner of any page.

Yes, patients can notice irritation after just one radiation treatment. Some people are more sensitive to it than others.

Probably the most important thing I can tell you is to eat and drink water. This is what will make or break you during rads. Every single day you should get at least 2500 calories and 48-64 oz of water. If you can take more in like 3000 calories that is even better. I know it sounds like alot but your body is burning it up at an increased rate during rads and recovery. Weight loss during rads should be kept to a minimum, doctors like to see zero weight loss which is very difficult to do. To help with fluid intake, there is also the option of asking your doc for an open prescription for extra hydration (usually done in the chemo lab).

Pain management is also very important. Many here have used the fentanyl patch for a short time with it helping them tremendously. Directions on the patch must be followed to the letter! Never ever fold, rip, bend, tear, cut or damage the patch before putting it on or it could release too much of the medicine at one. Also avoid long, hot showers or baths when using the patch.

If you read thru posts, you will pick up on all kinds of tips. Stick with us and we will help you get thru this and your recovery.


PS... To avoid any confusion with having 2 threads going at the same time Ive joined your posts together.

Hi there and thank you! I am trying to eat. I have the obstacle of having a gastric sleeve so that I can eat very little to begin with and getting proper hydration is a problem on a good day. I am trying really hard and I will continue to do so. My throat is sore again tonight, but when I awoke this morning it was fine. I know one morning I will wake up and it will hurt still - my body can't repair fast enough to avoid the damage forever. I really appreciate the response. I don't seem to be able to get anyone else to notice. THANKS!!

Tracy - welcome to our family. We're all here to support you and answer any questions that might come up. I found that my throat and mouth were okay for the first 10 days or so of radiation, but we're all different - so you are definitely not crazy!

When mouth sores became a problem I was given viscous lidocaine to swish around before eating.... well, before taking the liquid nutrition that I lived on for 8 months. It's a numbing agent and was a lifesaver for me.

Please come here to rant whenever you feel the need!

My thoughts are with you.

Hi, Tracy.
I'm very sorry that you're not getting the emotional support that you need at home, but as others have said, we are here for ya! I hope that you are able to get physical support at home, because that was a huge need of mine especially when you have children.
I'm not sure if you're being treated at a comprehensive cancer center, but if you are there are likely social workers who specialize in patients/families dealing with cancer. Like it or not, they are all along for the ride.
Your 12 year old daughter and younger children might need some special attention. This is the time to call family and friends, community, or church members for help in many areas... Rides to treatment, cooking, cleaning, child care, respite care, etc. There are website that are tremendously helpful in getting your people together and coordinate all of your needs. We used helping hands.com. I think one of my friends found it via Livestrong. I know there are other sites like it that one could easily find with a quick Google search.
We all know how overwhelming life is right now, but it won't be forever, though it seems that way at times. Just keep coming back and we'll get you through this!

Love in OCF,
Kerri

Thank you so much for your responses. I appreciate the friendship and support very much!