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Hoping for suggestions..Feeding tube/mucous
grateful*2
5 Posts
Hi, I am new to this site, and I am hoping to find others that may be experiencing the same issues I am.
I was diagnosed in 2019 with HPV oropharnynx squamous cell carcinoma on my tonsil. I went thru 35 radiation treatments and 2 cisplatin chemo treatments. It was successful for a year and 2 months. I can tell you that with radiation the saliva becomes really thick and stringy and makes eating swallowing very difficult. In March of 2021 the cancer returned in same location. Guess I am part of the 5% where recurrence can happen. It was caught early so surgery was my option. Wondering if anyone else has had Transoral Robotic Surgery for small tumors in mouth. ( TORS). I am healing from it now but am still on the Feeding tube. I am having mucous issues real bad that hinder me from swallowing anything. I want to get off the Tube and eat again. Has anyone else have this problem while on a feeding tube, and what have you done to help...any recommendations would be appreciated. P.S the situation is made worse as I have already had radiation/chemo which makes the mucous this time worse.
8 Replies
Trillium
1228 Posts
Hello grateful*2‍ - Love your user name. So sorry you have had a recurrence of your cancer in the same spot but glad it was caught early. Marilyn03‍ also has a G-tube. law1‍ has had mouth surgery as well. I found this PDF on coping with thick saliva. https://wrha.mb.ca/files/nutrition-cancer-managing-thick-saliva-mucous.pdf

Thanks for joining us in conversation!

Warm hugs
Trillium


#gtube #gastrointestinal #thicksaliva #mucus #eating
law1
483 Posts
grateful*2
Hello and Welcome to this wonderful group of folks. As those of us diagnosed with cancer and/ or as caregivers, we are sympathetic and caring people who value your posts, your emotions, and your privacy.
I was also diagnosed with cancer of the right tonsil and tongue base. For 40 years I had smoked all items which were smokable, I had guzzled gin+tonics regularly, and I tested HPV positive. I had 36 rounds of radiation...back in 2018. Recovery pain from oral blisters was intense and kept me from eating or swallowing without using a numbing topical anesthetic, yet I did not have chemo nor surgery. and I declined a g tube. Nutritionists were not pleased with me. Oncologists tolerated my choices with great concern.
Today, in 2021, my mucous remains very thick, and often I need to reach into my mouth to remove it. I have learned that it may become less thick yet, so far,not for everyone (such as you or me) My salivary glands were radiation-zapped and no longer exist, so liquid and salivary assistance is required to prevent me choking or gagging. (Not a pretty sight or sound!) I keep a bottle of water with me 24/7 and a bottle also on my bedside table.... I regularly wake during the night to take a gulp and "un-stick" my tongue from the roof of my mouth. I suggest plastic water bottles as during the night I can swing my arm to reach it and send the bottle flying.Then I have to get out of bed and find the bottle which leads to cursing a blue streak.Often, while awake and asleep I apply Xylimelt discs to my gums, which stimulate mouth saliva to a certain extent. They are available at larger pharmacies or drugstores (such as London Drug).They also help the saliva wash down harmful mouth bacteria.
Trillium‍ offered a helpful PDF site which I hope will relay some mucous- management techniques.
Please keep us abreast as we are rooting for you !!
law1
Julie44
6 Posts
Hi,

I was diagnosed with same cancer as you in 2015 and had exactly the same issues. Thick saliva that you have to remise yourself (really unpleasant and disgusting), not being able to swallow anything even liquid and spitting all the time in a pot.
I had a G tube a week after I started my treatment (same treatment as you). I did not like it but I would not have been able to eat or drink anything without it.
I asked to have it removed 2 months after the end of my treatment even though my mouth was still in pain and raw. They were a bit reluctant but did it. I started with yogurt and really plain, soft food (soups, puddings...). Each meal was an ordeal lasting a long time but I stuck to it. I ate pasta with creamy sauce for 3 months basically but I also introduced other food little by little. It took me quite a while and even now there are foods that get stuck. But I did it and eventually regained weight.
It is a long process but I did it so I am sure that you have the motivation, you will be fine.
I hope this helps! Keep us informed!
Marilyn03
6 Posts
Hi @grateful*2

I’m sorry to hear about your reoccurring cancer. Going through the process it’s difficult and I hope you have support . This community is great for advice and support.

I have a similar cancer, which affected my tongue. It unfortunately needed to be removed in a glossectomy surgery. It was replaced with tissue from my forearm. As a result I have a speech impediment and cannot eat. I can drink water, and slightly thickened liquid.
I do hope one day the ability to eat will come back.
I too have thick mucous. More so also from the radiation. I rinse my mouth as lot, every 15 minutes or so. I also carry a water bottle with me everywhere I go. The best way to clear the mouth. Sometimes though there is thick mucous buildup at the back of the mouth, getting it out with fingers is the best way. My radiologist has requested I do baking soda rinses or saline rinses. This breaks down the mucous as well.

I understand how you feel. The first try here says when I woke up from surgery, my throat was swollen and I had a tracheotomy. Breathing was easier with the oxygen but the mucous build up was intense. Sleeping was very difficult and i is could only do so if I sat up straight otherwise the mucous would be too much.
over time the trich was removed, my throat swelling went down. My neck is still swollen. I’ve been told it may take up to a year for it to fully go away.

I hope those suggestions will help you. Please stay strong. It feels bad now, but it does get better. You will find ways to cope and lead a life being cancer.
grateful*2
5 Posts
Thank you so much for the information. I printed a copy of the tips you sent. Very helpful. Its just very frustrating as I was not anticipating this much mucous after surgery. They do tell you about the thick stringy saliva before you start radiation. I am very grateful though, as 2nd time around and it's ok, I'm hoping in time I will be back to eating again. I pray your doing well. Thank you for reaching out.
grateful*2
5 Posts
Thank you Law1, I am so sorry to hear about all that you have gone thru and are still going thru. When I was first diagnosed and did the radiation/chemo treatments, I was advised first to make sure I see a Dentist and get any issues I may have taken care of first. It was also recommended that I get fitted for mouth guards for teeth that I put a small amount of jell into to protect my gums. You leave in for 4 minutes ( I do both top/bottom at same time) than you have to wait 1/2 hour before you can have anything to drink. This is permanent now that I do. Since my surgery now...I have not been able to do the guard treatments as it makes me gag with all the mucous I am still dealing with. Thank you for reaching out and sharing your story. I pray that you are doing better and are well.
grateful*2
5 Posts
Hi Julie44, Thank you so much for sharing your story and reminding me that yes....it is a slow and painful process. I was eating not badly before the surgery...it took me awhile after radiation treatments were done to get there. With the surgery I knew there would be swelling for the first few weeks, but I was expecting to be eating normally again, I was not anticipating all the mucous that I have now. Yes, you are right in pointing out that I need to start from the beginning again with the softer foods no matter how long it takes, as I will get there again. I am sorry that you had to go through all of what you went through. You are strong! I will and am motivated to get back to where I was again. Thank you again. Stay Strong.
grateful*2
5 Posts
Hi Marilyn03,
I am so sorry to hear about what you have and are going through. Thank you for sharing your story. I know how awful the trach was, as I also had one which they switched to smaller one for when I came home from hospital. The sleeping sitting up was horrible, my neck was very tight, he head would fall forward and I would need someone to help upright my head again. That was in for 2 weeks,and was an awesome day when that was removed. Sleeping is getting better but I still need some elevation or the mucous gets so bad I start choking. As I survivor I learned the true meaning of patience...and I must now remind myself of that each and every day. As I read so many other stories of sharing. One day at a time is my motto now. Don;t think about tomorrow focus on the day. You are very strong and keep the faith and never loose hope...you will be able to eat again. I hope that your are doing well. Stay strong.
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