Starting de-escalated treatment for base of tongue

Posted by dalejohnson @dalejohnson, Jul 5, 2021

I am beginning de-escalated chemoraddiation treatment for base of tounge cancer. Ten days twice a day for radiation. I would like to hear from others who have had similar treatment how post treatment went and what to expect.

Interested in more discussions like this? Go to the Head & Neck Cancer group.

Hi @dalejohnson, welcome to Mayo Clinic Connect. I've added your question to the Head & Neck Cancer support group here: https://connect.mayoclinic.org/group/head-neck-cancer/

I'm tagging @alpaca @ezg @desouzaj1 @gdawg @sepdvm to join this discussion too.

Dale, treatment de-escalation to my understanding is a way to improve physical quality of life for patients, maximize effectiveness of treatment while monitoring closely to reduce treatment doses if side effects become too much or irreversible. Is this your understanding too? What type of chemo will you be getting?

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@dalejohnson That sounds like progress Dale. Here in New Zealand we don't have "de-escalated" treatment yet but it has been discussed in groups I am in for many years. I assume you will get the usual radiation side effects but to a lesser extent or at least a shorter time. Let us know how you get on.

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@colleenyoung

Hi @dalejohnson, welcome to Mayo Clinic Connect. I've added your question to the Head & Neck Cancer support group here: https://connect.mayoclinic.org/group/head-neck-cancer/

I'm tagging @alpaca @ezg @desouzaj1 @gdawg @sepdvm to join this discussion too.

Dale, treatment de-escalation to my understanding is a way to improve physical quality of life for patients, maximize effectiveness of treatment while monitoring closely to reduce treatment doses if side effects become too much or irreversible. Is this your understanding too? What type of chemo will you be getting?

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It will be 15 milligram/meter sq of docetaxel on the first day of two consecutive weeks.

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I am currently at the Mayo in MN. I was diagnosed on 8/12, had surgery to remove RT Tonsil, tumor and 42 lymph nodes on 9/7. Based on the pathology reports post surgery I was recommended for the DART HPV protocol. Started the 2 week twice a day radiation and 2 doses of docetaxel on 10/4 and I am 2 days away from finishing this treatment protocol. Things have gone pretty well to this point. How have things worked out for you so far? Info on this DART HPV study derived protocol is hard to come by.

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Whatever you do, find a good PT to give you stretching exercises for your neck muscles. My neck was pretty tight after radiation, but boy….over the next 4 years it has really become an issue affecting my tongue, speech, arm, scapula, etc. If I would have been stretching during treatment and after the treatment for several years, my issues maybe could have been avoided. Sadly, my radiation doctor didn't mention anything about stretching.

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@iamgroot

I am currently at the Mayo in MN. I was diagnosed on 8/12, had surgery to remove RT Tonsil, tumor and 42 lymph nodes on 9/7. Based on the pathology reports post surgery I was recommended for the DART HPV protocol. Started the 2 week twice a day radiation and 2 doses of docetaxel on 10/4 and I am 2 days away from finishing this treatment protocol. Things have gone pretty well to this point. How have things worked out for you so far? Info on this DART HPV study derived protocol is hard to come by.

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Hey @iamgroot, I'm not sure if you saw the reply from @denisebriggs recommending PT and stretching exercises for your neck muscles. It's been a little more than a week since you finished treatment. How are you doing?

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I hope you are doing well. This is probably the toughest time. Make sure to stretch your tongue and the neck. this is crucial right now. You can do this.

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@denisebriggs

I hope you are doing well. This is probably the toughest time. Make sure to stretch your tongue and the neck. this is crucial right now. You can do this.

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I have been stretching and getting weekly ART massages. Things are very good as far as flexibility and range of motion. Never had a completely dry mouth but my tastebuds were destroyed. Taste has changed to the point we’re most things aren’t disgusting but not much tastes right or good. Hair from mid ear down on the back of my head hasn’t started growing back yet. Now it’s down to the waiting for the first trip back for tests in mid January. Thank you for the advice. Happy Thanksgiving.

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What is an ART massage?

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@denisebriggs

What is an ART massage?

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Denise, ART stands for Active Release Technique. “Active release technique (ART) treats your body’s soft tissue by combining manipulation and movement. The technique’s been around for more than 30 years." Read more here:
– Active Release Technique Uses and Benefits https://www.healthline.com/health/active-release-technique

I'm sure @iamgroot and @artscaping can tell you more about ART from personal experience.

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