Tongue cancer patient completed 5 weeks of chemo and radiation, learning how to eat thru mouth and ready to exchange info and ideas on learning how to swallow and post chemo rad treatment effects and testing for remaining cancer …
@rich8 Hello and welcome to our caring community…..I am sorry for your reason to join us; but glad you did. We are here….to listen….to share….to support one another.
Please meet: @law1 Thank you so much, if you could share your experiences, here, to support our new member,similar path…..much appreciation.
Welcome to the World of Head+Neck Cancers, @rich8 . I, too recovered from tongue cancer and have been cancer free for 3 years, as shown after a PET scan. It is still a daily ‘New Normal’ for me. Treatment has become exams every few months with tubes and cameras threaded thru my nostril for tongue and throat assessment. The best part is that I am able to actually see my scans on the doc's computer screen during the exam. Most patients find that stuff too gross, but I want to see what the heck my oral cavity looks like. It's fascinating and the doc may allow you to see yours as well.
I've also written a bio of my recovery journey below, which may offer additional info for you……
Recovery for me was: pleghm as thick as glue, constant gagging, coughing, swelling of the outer sides of the throat, inability to speak clearly, inability to open my mouth very wide (maybe 1 cm for months) and fatigue, depression, and a blistered tongue that caused me to refuse to swallow anything, which dehydrated me to the point of being an inpatient with IVs of re-hydrating ‘stuff’…. I lost 30 pounds and had no appetite due to the opioids, Fentanyl patches, and constantly horrid tongue and throat pain. Add to that, several bouts of thrush. I could no longer swallow my meds, so had to ask for liquid hydromorphone. My doctor mentioned a variety of possible side effects, but reinforced that he was unsure due to the fact that every situation for a patient differs……
I still (after 3 years being cancer-free) have fatigue, depression which comes and goes, swallowing which often brings gagging, my mouth hurts when I yawn too wide, and I have given up meat as it is impossible for me to chew and swallow. And, my senses of smell and taste are gone.
I have no saliva so my teeth are in danger of disease…..
I use saliva tablets called Xylimelts, and I received exercises from the speech pathologist to improve my swallowing, speaking and maintain more jaw flexibility. There are massage exercises you can learn which help drain the plegm collecting around the tongue area, and keep water to sip at all times… and throughout the night when required.
Basically, my best friend is Lidodan 2%, a red viscous gargle which numbs the mouth so I can now eat more easily and far more nutrition that is so vital. I think it's good for you to eat a lot because your body still needs to recover protein. Lidodan 2% is available from pharmacies (without prescription), but you must request it from a pharmacist as it is a topical anesthetic and numbs your oral cavity for about 20 minutes.
Talk to a Nutritionist, and a speech pathologist, who can set you on a recovery path. Fatigue and depression often stay with those of us who had head+neck cancers.😒 If there is a counsellor available at your Cancer Centre, you may want to speak with him/her as they deal with folks like us empathetically and are very supportive.
I hope this helps you a bit, and please keep posting your status!! I also made a brief list of questions for doctors and they were able to answer a few….they are soooooo busy, and, online research available on this site may hold some answers for you. Publications, and Forum discussions are very illuminating as well. Hang in there!!
Thanks for sharing. Sounds more serious than my case. I have trouble getting the radiation oncologist to give me the time of day. 😀.
I am eating thru a stomach tube and historically i was an 8 glass of water a day. I think it helped with the radiation and chemo treatments. I had 5 weeks, and the chemo effects were minimal. The radiation was significant, with acute mucositis during week three. By week 5 i was trying to skip week 6. Was successful. Now trying to get the rad onco's attention for post radiation concerns …. surrounded by protective staff, it's impossible to get a meeting.
The next challenge is to eat thru the mouth. My boundaries are honey thick liquids to pureed solid foods. SLP given me a bunch of exercises and have had a couple of barium swallow tests. Difficulty trying to convince the SLP to do them every couple of months. They think it is going to take forever.! My main problem is the amount of water i drink. 8 glasses or 16 cups of thickened water is not only hard to drink, but silly to have to make! I'm not that concerned with nutrition and weight loss. The GI tube helped. Also i can afford to lose 25 lbs. Any suggestions on how to move to water level appreciated. Also, if you like fish, baked or poached is considered pureed food. Doesn't all have to be baby food. Custards or pureed fruit cups great snacks. Yogurt shakes. Congee blended to remove the water is another alternative.
Happy to give and receive input on eating issues, or post chemo/radiation issues.
Not at the testing to see if any remaining cancer exists yet. Just complete the chemo/rad Aug 4th. Operation was April 13th.
You have just recently been given the Go Ahead for follow-up recovery….usually the PET scan is given 3 months post-treatment. That is when the oncologist will pay attention to you and the results. The docs are sooooooooooo busy, that they tend to call the shots for meeting with you and it won't be on your schedule I assure you. The medical team is aware of the follow-up regimen for you and they seem to fall in line in synch like a medical deck of cards being shuffled…..
I know what a hassle the ‘water thickening’ can be as I ended up forgoing it as the texture and water-to-thickener balance was too yucky for me…and food texture is my eating distinction these days as taste and smell are usually absent. The SLP will assist in your learning to eat thru your mouth again…I don't know what the schedule would be since you have or had a feeding tube recently. A Nutritionist will be full of recipes for you and after about a year I was able to tolerate swallowing without pain…..patience is the magic operative word.
I had HNC treatment way back in 2006, and would like to caution and emphasize that for HNC patients - exercises to the mouth, tongue, and jaw are very important! Because I had not been diligent with these exercises and/or had not been doing them, I am now having a tough time with swallowing and speaking (exacerbated with the pandemic work from home … to the point where I am not able to form the words and get it out of my mouth (comments from others who are not aware of my situation - “.. she is slurring ..”). With such ‘invisible disabilities’, together with hearing, I find that I tend to be pretty much anti-social ever since these late effects of radiation sets in.
This post is hoping that you do not go through what I am going through now … pls be diligent with the exercises the speech pathologist recommends.
Keep well & take care!
Wow, @josk , thank you for sending this valuable yet sad feature of your current cancer-free life. I am hoping that in time, beginning your exercises again diligently, perhaps a small bit of flexibility and speech changes will return. My SLP was adamant in explaining the importance of long-term patience and diligence, rather than enormity of exercise for short-term goals. You have reminded me how I must get back to daily facial exercises, stretching the jaws, and keeping the muscles of the face active rather than freezing. Good Luck to you… and I have learned also that critics of our New Normal are freaked out and silenced by the grosser aspects of our cancer journey and current care regimen.