Previous Thread
Next Thread
Print Thread
#200749 03-25-2021 09:04 PM
Joined: Aug 2019
Posts: 21
Likes: 2
Member
OP Offline
Member

Joined: Aug 2019
Posts: 21
Likes: 2
Today is my two year anniversary from my last radiation treatment. Just want to share with my fellow OC friends. I had a recurrence of floor of mouth cancer after being cancer free for 5 years. This time it was stage IV. Found it in October of 2018. I had two rounds of Cisplatin and 35 radiation treatments.
The recovery has been painstakingly slow, but I am grateful to be where I am compared to a year ago. I'm just, in the past 6 months, getting off of a diet consisting of mostly liquids. My dry mouth has been severe making eating any solids dangerously difficult. Very High Calorie (530) Boost has been my savior. Although it is expensive, imo, and my sugar levels were very high on my last lab results. I am taking pilocarpine and using xylimelts at night. I also took 40 HBO dives last Summer. It was amazingly beneficial to me. My swallowing has been improving ever since. I am hoping and praying it will help ward off the insidious effects of radiation down the road.

I still experience sore gums even though my dental check ups are good. Another side effect I have is zero tolerance for anything even slightly tangy, which I have found a lot of food is tangy to my radiated mouth. I have never been a cook at all, but with my special dietary needs, I have been spending more time in the kitchen trying to figure out what I can eat. It's been thrilling being able to eat again, albeit very limited. Oddly, one of the things I can eat are tostados with the crunchy shell, but I can't dissolve soft tortillas. You'd think it would be the opposite.

One thing I have noticed is that I have become more comfortable with how weird food feels in my mouth. My lack of saliva does not enable me to make a bolus with food so that I can swallow it. Food kind of goes all over my mouth and I have to us water to get it down after every bite. My tongue is a bit shorter so that is a challenge. I'm always very aware of choking, so it takes forever for me to chew food. I still supplement with Boost. I don't want to lose any more weight. I dropped 20 lbs.

My energy has also improved immensely over the last 6 months. Thank goodness. I didn't realize how low it's been until it started coming back. I no longer have lethargy most of the day. I have a 6 month old Lab and she keeps me very active and I keep up with her.

I do believe that our bodies keep healing every day. My surgeon told me that wherever I'm at in my recovery one year post treatment is pretty much where I'll stay. Thank goodness he was wrong. I am way better. I am so thankful for where I'm at because I know how much worse I could be. Strength to all of you out there. I hope and pray you find blessings in your journey. I know I have.

Thank you for letting me share my small milestone. It's nice having OC friends that understand.

Last edited by ChristineB; 04-03-2021 06:55 AM.
2 members like this: Mokie, DonVila
Joined: Sep 2019
Posts: 53
Likes: 2
Supporting Member (50+ posts)
Online
Supporting Member (50+ posts)

Joined: Sep 2019
Posts: 53
Likes: 2
Congrats thankful girl,my 2 years coming up in October like you said my energy level is still increasing every day and I think our body never stop healing in one form or the other and I just wanted to mention my dr prescribed me 7.5 mg salagen tab 3 times a day for dry mouth they really do make a difference hope this helps you.

Last edited by Paan; 03-26-2021 12:24 AM.
Paan #200752 03-26-2021 07:21 AM
Joined: Aug 2019
Posts: 21
Likes: 2
Member
OP Offline
Member

Joined: Aug 2019
Posts: 21
Likes: 2
Thank you Paan!

And thank you for sharing your medication that works for you with me. I have a dr. appt. next Friday and I will absolutely ask him about Salagen. I really appreciate your recommendation. I am surprised how much I learn about things from this awesome OC website/community that my radiologist/surgeon never mentioned. Any little thing that will help our quality of life is very much appreciated. 😊

Joined: Aug 2020
Posts: 44
Likes: 2
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Aug 2020
Posts: 44
Likes: 2
TG,

Congrats on making it through multiple long difficult treatments with such a positive attitude. Inspiring! I am nearly a year out from my surgery and about 9 months out from my last radiation treatment. Food and flavors get better constantly. I find something new about every couple weeks. For example, no way I could eat a grape at the height of my treatment. I grabbed one off the counter out of habit in my last week and quickly spit it out. It took a good 5 minutes to get that awful taste out. Now, I eat grapes again regularly, slowly, but regularly and they taste pretty good again. I can eat a cracker now! That was a mess the first time - took about half a glass of water to eat one cracker last fall.

Thanks for sharing your story. We persevere because we love and because we are loved. Stay safe and keep the faith.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20

Link Copied to Clipboard
Top Posters
ChristineB 10,504
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,751
Newest Members
EHarris, pandasupport, JoyA, jllabrestn01, Luvmymomma
12,689 Registered Users
Forum Statistics
Forums23
Topics17,932
Posts195,830
Members12,689
Most Online458
Jan 16th, 2020
OCF Awards

Powered by UBB.threads™ PHP Forum Software 7.7.5