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Horrid Tongue Ulcers after 36 fractions of Radiation

Horrid Tongue Ulcers after 36 fractions of Radiation

Posted by law on May 15, 2019 2:50 pm

Hi Tongue Cancer Survivors,
I am 5 months cancer-free and the tongue ulcers I've had for 8 months are slowly, slowly beginning to heal. 
Radiation ended in September 2018.
VERY difficult to swallow, eat, and chewing is nil.
I brush my teeth after eating anything, rinse with baking soda/ salt/ water.....and then guzzle Lidocaine to numb the tongue and throat.
I barely tolerate the agony but I continue eating and drinking Boost for protein. I eat Greens powder in water for fruit and veggie nutrients. I have gained 10 lbs. but it is hard to maintain without eating and drinking calories and fat, etc.
Can anyone relate?  What do you do....?  My medical team at BC Cancer Centre - Victoria tells me I am doing great even with the slow recovery.
Thanks for your help and any input .
law (Lisa)

Re: Horrid Tongue Ulcers after 36 fractions of Radiation

Posted by Cynthia Mac on May 16, 2019 7:30 am

Hi, Lisa law‍ ,

I’m glad to hear that your recovery is happening, albeit slowly. I’m going to tag JamesT‍ In to see if he has any comments for you.

The head of the corporation I used to work for had a cancer in the throat of some type. He lost a lot of weight because he couldn’t eat or chew for a long time, too. He suddenly was found carrying water with him everywhere, and I recall that he lost at least one saliva gland, and had to have water with every bite of food for a long time after.

Re: Horrid Tongue Ulcers after 36 fractions of Radiation

Posted by law on May 16, 2019 1:41 pm

Hi Cynthia Mac, and thank you for your comments and reading my whining....
It is a drag not being able to eat/ drink/ swallow as I used to do prior to radiation and cancer itself.
I hope you are doing well and I look forward to 2020 when my tongue will have healed.
I also carry water or Boost with me and need to drink before, during, and after meals ----and always!
Lisa

Re: Horrid Tongue Ulcers after 36 fractions of Radiation

Posted by JamesT on May 16, 2019 1:55 pm

Thanks Cynthia Mac‍ I have been in communication with Lisa law‍ 

I haven't followed up with you Lisa for a little bit now.  Sorry to hear everything is still so painful.

You are doing all the right things.

When is your next appointment at the cancer centre?

Sincerely,


James

Re: Horrid Tongue Ulcers after 36 fractions of Radiation

Posted by law on May 16, 2019 2:14 pm

Hi JamesT‍ ---- good to hear from you. Cynthia Mac mentioned she would contact you.
My tongue ulcers are slowly diminishing after 8 months.....I gag a lot  while eating, and try to eat often and drink Boost---it is a drag and I am getting tired of it. (Patience Lisa, baby steps. blah blah blah I say to myself).
My next appt. at the Cancer Centre is at the end of the month---all my medical team is aware of my condition as it is not uncommon after radiation of the tongue to have horrid sores.
But--- with a little whining,I feel more human!
How are you and life in general?
I hope you are doing well James
Lisa (law)

Re: Horrid Tongue Ulcers after 36 fractions of Radiation

Posted by Lacey_adminCCS on May 16, 2019 3:19 pm

law‍ 

Lisa,

I'm glad you are feeling a little more human I hope things continue to improve.

Trundle‍. Lucy1245‍, Quispamguy‍, Begins‍, BennyGesserit‍, Vincenzo06‍, Meeras10‍ - How are you all managing? Any experience of tips to offer?

Thinking of you all,
Lacey

Re: Horrid Tongue Ulcers after 36 fractions of Radiation

Posted by Lucy1245 on May 16, 2019 7:07 pm

Hi, Lisa Law
i have had 35 radiation treatments and 7 weekly chemotherapy for my Cancer at base of tongue which finished at end of March. I continue to have nausea, no appetite and unable to gain weight despite Boost and eating solid food. I am able to chew and swallow with some difficult. I had no sores but throat very swollen and raw. This week I started weaning myself off Hydromorphone and having a lot of side effects (muscle aches, nausea, dizziness and inability to sleep for past 4 nights) so very exhausted. 
I have a trio planned in late June so hoping to getting better soon
Lucy1245‍ 

Re: Horrid Tongue Ulcers after 36 fractions of Radiation

Posted by law on May 17, 2019 1:47 pm

Hi All,
...and thank you for your continual support for recovery. This site is so helpful.
My tongue ulcers are still there in full force, although they are the size of a dime now, whereas before, they were the size of quarters.
It is still mushy food on my menu but I have hope that this time next year I'll be able to eat chewable foods again and swallow more easily.
I find frequent teeth brushing and gargling with baking soda, salt, and water, then gargling with Lidocaine help the pain for a few hours.
As my pain oncologist weans me off Fentanyl, my patch has dropped from 200 mcg/hr to 6mcg/hr....that is a boost for my mood.
Keep on being positive for the healthy future is my motto.
Law

Re: Horrid Tongue Ulcers after 36 fractions of Radiation

Posted by Cynthia Mac on May 18, 2019 8:59 am

It’s good that your mouth sores are reducing, law‍ , and that the changes in medication are helping you feel better, too.

Re: Horrid Tongue Ulcers after 36 fractions of Radiation

Posted by law on May 18, 2019 1:58 pm

Thank you, CynthiaMac, for your encouragement. I do hope you are not in any pain as we are fortunate to be functional.
Lisa

Re: Horrid Tongue Ulcers after 36 fractions of Radiation

Posted by Cynthia Mac on May 19, 2019 8:49 am

Oh, law‍ , thanks for your concern, but I’m a caregiver! Not that we don’t feel pain, it’s just that in this case my knowledge about the mouth sores comes via my Dad! Dad hasn’t had them since his chemo ended this time last year. 

Thanks for letting me know that the work we “encouragers” are doing is helping!