Week 1 Proton Therapy, unilateral for tonsil and Lymph node. HPV

Had my first session yesterday. Uneventful of course. I could see how others might have a tough time but it was a walk in the park for me.
I walked 5 miles and worked out in the gym before treatment so was feeling well. Today will split my exercise to make sure I get in a couple of miles of running after treatment every time.

Started fluoride treatment this morning along with mouth wash and gargle. Gargling several times a day is going to be a nuisance. But will comply.
SLP appt this morning and they said since it is unilateral they do not expect swallowing problems and but went through the information for me. Said no swallowing exercises needed. Hope that is the case. I had already been doing them. Along with neck and mouth exercises.

Nothing to see here..yet. just change in routine to incorporate all the stuff.

It’s great to see you have such a positive attitude. The gargling is a pain but when the mouth sores and gunk become too much, you can consider using a Waterpik on the lowest setting. Use the tongue scraper and put a spoonful of magic mouthwash into the warm water. It works really well at that point when you feel you just don’t want to bother with gargling anymore.

I’m frustrated with myself for not checking on possibilities of proton therapy for my husband. He has base of tongue with Mets to lymph node, HPV +. I did ask but our radiologist oncologist said he would not qualify because it was base of tongue and no where for protons to bounce off of. They do not offer it at Hopkins until this September but university of Maryland does (both in Baltimore). Now I see others with tonsil and BOT getting it. Feel like I may have been lied to because they don’t offer it yet

Judy,

I had protons on 2014 for head and neck metasteses. At that time, besides other cancers, in regards to ours it was only given for certain cancers like brain, skull base and metatasric head and neck cancer with prior radiation. MD Anderson was doing studies with head and neck cancer outside this group, some as initial radiation treatment. I believe it has changed since then.

It was very time consuming, and only had several spots to hit. Took anywhere from 20 to 45 minutes to get the set-up right. The radiation took a few minutes, if that! Some initial head and neck cancers need a broader area like my first IMRT hit 17 spots bilaterally. Although protons could do that, I could only imagine how long that would take for set up.

There is a newer type of Protons, called IMPT, that does the set up like IORT and can hit multiple spots, but there may be only 7 locations in the U.S. that has that, and again, it may not be for all.

Good luck with your search, and you’re doing right by asking, and seeing about your options.

Thanks for the reply. We are in Baltimore, Md. University of Maryland Medical Center is one of 11 who already has this therapy. Hopkins opening their center in September. I was going to refer to UMMC but after she told us he wasn’t a candidate I backed off. Everything else I doubted them of, has turned out to be true so I’ll believe it because he’s 4 days into radiation now so don’t want to look back. But moving forward, will check if needed.

Good luck moving forward, Judy 210!