Minor Salivary gland cancer palate

wbcgaruss

Michele, you are very welcome.

And thank you for your kind remarks and concern.

So glad you are cooking and making some delicious creamy soups.

You will get some good nutrition out of those handmade soups.

The creamy potato was always my favorite.

I am glad for you that you joined the Bible Study more exposure to God’s word in a learning setting will be good for you, good for anyone really.

And you are right about getting out of your box, being among people will help you feel comfortable and just feel better, more normal, because this cancer stuff always seems to make us withdraw, at least for a while. Especially during treatments when we just don’t feel good.

That is very kind of you to visit those ladies in the nursing home.

And in the long run, I bet it is fulfilling for you.

It helps them and gives them someone to look forward to coming to see them and you would be surprised how when you are there just saying hi to some others and asking how they are doing will make their day.

Michele eating will come back to you but like you say not too much fiber at a time so start slowly and experiment with different foods in small amounts.

Wishing You the Best

Take Care God Bless

Mom68

https://csn.cancer.org/discussion/comment/1699834#Comment_1699834

Oh wow! 2 fistulas???? Please keep me posted on how your healing goes. I may not respond right away, but I promise I will. 💕

I LOVE that you found a better specialist! And a better plan! Amen! That is sooooooooooooo great! Having that connection with your care giver/doctor, and knowing that they will work with you and you with them, each step of the way, is deeply empowering. I'm very grateful that you found that specialist! Amen! 🙏

I seem to recall one of us with salivary gland cancer had a skin graft (I think the skin was taken from the thigh?) and then they used that to seal up the fistula they had??? That might be something to talk about with this new specialist.

amichele

https://csn.cancer.org/discussion/comment/1699949#Comment_1699949

It has been a very long time since I have given an update on my progress, and I wanted to let you know how everything is going. You have been a real help to me and I didn't want to just disappear! And hopefully others who find this site and have similar cancers can get some use from this.

I am now almost three months from my surgery, hurrah! Last time I updated I was pursuing the obturator diligently because my surgeon recommended no graft or surgical closure of the fistula on my palate because it hides any return of the tumor. But I have good news on the obturator! A photo of the old one (pink) and new one (clear) is at the bottom.

In late September I finally got my interim obturator from the prosthodontist I had petitioned my insurance to let me see. On my 4th appeal the insurance company finally offered coverage to see her. The obturator fits much better than the previous one, improves my speech, and allows me to drink full glasses of water at one go. With it I can also drink through a straw, and have learned how to eat all kinds of things again. Crumbly things like cake or sticky things like peanut butter are still not good for me, and I avoid really hard things like crispy cookies or hard pizza crusts. But I really relish every meal and I have gotten back into cooking too.

The obturator is a clear plastic and covers the entire roof of my mouth. It has retention wires that wrap around my back teeth and 1st molars. It is also held in place by firmly pressing against all my upper teeth. It is not “comfortable" exactly but it's certainly not awful. The feeling is one of pressure and there is also  less space for my tongue. The prosthodontists had to drill grooves for the wires between my first molars to create the fit. One wire in the back projects a little too far from my tooth so I can feel it when I bite, and sometimes my tongue will get snagged on it, Ouch! The worst part about getting the obturator was having the mold made, because she had to do it three times to get it just right. The process took over 2 hours. I'm going in a couple of weeks to get the fit checked with the doctor, and hope that it can be adjusted. In a couple of months she will probably make my definitive obturator, which will be thinner and made from metal. It is also a lot more expensive.

Right now I wear the obturator for meals and take it out afterwards to rinse it off and brush my teeth. I only wear it for a couple of hours a day because the prosthodontist said most of the healing occurs when you are not wearing it. One benefit of wearing the obturator is that it calms the sensation on my palate where the skin has regrown. The nerve supplying the tissue on that half of my palate was removed during the surgery, so technically I should have no sensation there. However, all day long I have a strong burning feeling on the roof of my mouth. I am very hopeful that this will eventually fade. The obturator diminishes that unpleasant sensation, so if I start wearing it more that should help. 

At my 2 month checkup with my surgeon I still had two small holes in my palate, one in the middle, and one near the junction of the hard and soft palate. Since then the one at the back seems to have healed shut, I can no longer see it. The one closer to the front is still there but is smaller. The surgeon said it had “epithelialized” so it will not at this point be able to heal shut. That means skin has grown around the edges of the opening. It is small so it interferes much less with speech and water sneaks into my nose less often!

I have now reached three months post-surgery and am scheduled to get an MRI in two days. The doctor wants to confirm that all the cancer is gone, and use this MRI as a baseline for going forward. I think I will have another at 6 months and then yearly after that. Polymorphous Adenocarcinoma can return at any point. It if does there would be more surgery in addition to radiation. I will see my surgeon in a week to go over the MRI results.

I still wake up sometimes in the night because airflow from my fistula is drying out my tongue, and thoughts of “what if it comes back” or what if something worse comes my way keep me from falling back to sleep. But overall my energy, mood, and outlook on life are much better. I get more done each day than I used to and feel less self conscious socializing. Not quite normal, but closer to it which is great.

I hope you are doing well, and are enjoying the fall. I didn’t really have any questions this time, I realize now! That is something new too. You don't have to reply if you are busy. I just wanted to check in here again, and wish you the very best for the rest of 2022! 🙂

💝

amichele

https://csn.cancer.org/discussion/comment/1699837#Comment_1699837

Hi Russ!

I posted an update as a reply to Mom68 which I hope you will check out on the site. Doing much better and getting MRI to check on things in a couple days. I hope you are well and enjoying the fall!

Thank you again for your support, and God bless you!

Mom68

https://csn.cancer.org/discussion/comment/1701126#Comment_1701126

Hi Michele! That is great news! I'm so glad the insurance approval FINALLY came through! You are heading into the holidays in great shape! I can certainly see why the wires would bother you. Hopefully, the doctor can get those trimmed and taken care of during the next visit.

I keep LOTS of water beside my bed. I dry out in the middle of the night as well, and having water there helps me a ton. I also take a pill to help me sleep through the night because I have sleep anxiety. I don't know if that is a thing that would be helpful for you but it helps me to sleep better, and keep the anxiety at night at a minimum. My primary prescribes it for me, and I only take it as needed.

Gosh, I'm really happy for you! Thank you for the update! Blessings to you! 🤗💕

wbcgaruss

Michele thanks for checking back with an update.

I am glad your insurance finally came through and you have an obturator that is more comfortable and works better. You are learning to live with it, figuring out what works and what doesn't. I am glad you can eat and drink better. Be careful with the tongue getting snagged, I am sure that hurts. I think the burning sensation on the roof of your mouth will diminish over time, it is probably nerves. I am praying for a clean clear MRI that is unremarkable and NED. I will put you on my prayer list. And praying for no return ever. So glad you eat better, speak better, drink better, and just feel better overall, and congrats on getting back into cooking. Send us some cyber cookies or maybe mashed potatoes. We all have that in the back of our minds about cancer returning but after a while, it gets further back in our minds, it takes time but we decide we will not be a captive of cancer nor any part of it, just deal with today items and take care of that. I am enjoying the fall and I hope you folks are.

Wishing You the Best

Take Care God Bless-Russ