Tongue cancer - mine

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I thought I was going to feel worse then I did. I found time such as sitting there during four hours during chemo, between 5AM feeding and 8:30 AM departure for radiation. My therapies ended during the treatments which freed up a lot of time.There were a few sections I dropped, and I stopped for the most part posting Autism news stories

The mouth and tongue swelling from the radiation I finished a month ago has gone down and I still have some bad taste and secretions I cough out.

I had follow up appointments up with all my doctors this week. I will have a cat scan or MRI in two weeks and an overall Pet Scan in a few months. Both my radiation doctor and my surgeon wrote scripts allowing resumption of physical therapy (if insurance allows) and speech therapy mouth exercises and taking liquid foods by mouth via syringe if the leftover bad taste will allow for it.

Radiation effects are supposed to continue to decrease over the next months

For the American WP members happy 4th of July weekend. I hope the fireworks are not too jarring.

So you do not have to read the entire thread some background information for those new or just to refresh everyone's memory. In February 2015 I suffered a mild stroke. In September 2016 I had a tongue replacement operation due to tongue cancer. The cancer came back so I had another tongue replacement operation in February 2016. Due to these operations I lost the ability to speak an have to be fed via feeding tube. During this time I have been living in a rehabilitation facility.

The latest PET scan came back clean. The MRI did show a paralyzed vocal chord. I will be returning home next Wednesday November 16 with a home care aide who will be there 7 days a week, 4 hours a day. She can drive to doctors appointments and shopping etc. This is via Medicaid which I hope survives the Trump administration. I live with my elderly mom who needs the aide as much if not more than I do. The trach that was installed for breathing during the operation has recently been removed. A little bit of the speech has come back due to speech and swallow therapy. As far as feeding through the the mouth I am undergoing testing to see what will be possible. I can walk very well with a cane which I hope to get off soon

I'm glad you are recovering from your long ordeal. Yes, I also hope our necessary medical supports will not be ripped out from under us. Best wishes, Bea

Congratulations, Sir, on your recovery.

I don't believe Trump will be able to get rid of Medicare/Medicaid.

kudos to you on your patience in recovery. so glad for the PET scan news.

It took a long time with all the insurance bureaucracy I am undergoing intensive speech and swallow therapy and am making progress. I am able to eat pureed food and drink nectar thick liquids. Some of my words are understandable. Physical therapy should be resuming soon but until then I take a daily walk.

Thanks for the update, ASPartOfMe. I'm glad to hear things are progressing. *pins a medal on you*

Crazy couple of weeks in the health department. One day my feeding (PEG) tube fell out. Usually you go to the ER they replace it and you are good to go for the next few months. Not this time, the tube fell out again and I developed watery diarrhea. They replaced the tube with a bigger one and ballon. Tube fell out again and now the diarrhea was bloody. It ended up with me having a colonoscopy and a complete new PEG as well as much bigger balloon. Colonoscopy showed colitis which I had in the early 90's , hemorrhoids, a few polyps. Biopsy s were taken on two areas.

In addition I my my regular appointment with my ENT next week for the throat cancer.

Man....you've been going through a lot!

But one good thing: despite all that has happened, you are still "somewhat verbal." I would say that this is excellent progress.

And your mind is definitely quite intact!

Congratulations on how you dealt with those therapies and health exams so far, I look up to you. Get well soon.

I have not posted in this thread in a long time so here is summery.
I had tongue replacement surgery in September 2015 and had to redo it in February 2016 when cancer came back. My ability talk and eat stopped. I was slowly recovering these abilities when I had ear shingles(Ramsey Hunt Syndrome) and associated facial paralysis this spring which set me back. I am now back to eating some pureed food and my talking is very mumbled but slowly coming improving.


I saw my surgeon yesterday, everything is clean. He said he did not expect me to be around at this point. So I am viewing every day as bonus time.

Good news. I celebrate it.

Good news on the clean PET scan, ASPartOfMe!

happy for you.