Hi all,

I’ve been lurking for a while since I got my diagnosis on 2/12/18. I had partial glossectomy and flap rebuild to floor of mouth with my chin tissue on 2/16/18 . Staged T1N0M0 at diagnosis changed to T1N1M0 after neck dissection (1/16 lymph nodes positive) UAB wanted to do radiation but I was concerned about long term damage and secondary cancers since I’m an otherwise very healthy 52 year old non smoker, light drinker, no risk factors.
Went out to MD Anderson to check on Proton Therapy and was impressed by the many many doctors I saw there that were put on my team. I’m weakly positive for HPV(no one can say if that’s a yes or no)
Anyway I go for my simulation etc next week and then start a week or two after that. Anyone have experience with Proton Therapy or getting treated at MD Anderson and have advice?

Thanks in advance!
Linda Linch

Welcome to OCF, Linda! You're in the right place to get info and support to help you get thru your upcoming treatments and recovery.

We have had some members who have been thru proton therapy. Off the top of my head I cant remember anyone besides Paul who has had the proton treatments, Im certain we do have several others (they may not be actively posting). Most of our oral cancer (OC) patients/survivors who went thru rads were given IMRT. At the end of 2017, there were only 27 US facilities that offer proton therapy with 16 more being planned to open. Regardless, Im certain we can still help you At the end of my post, Ive added a link to our main OCF site. The link goes directly to the Treatment section in the Understanding tab. Theres page after page of info that can help you learn a great deal more about your cancer, treatments (specifically rads), etc. If you would like to read posts about proton therapy, type proton in the white search box near the upper right of any page. An informed patient is a strong advocate for themselves.

Many of our members have been treated at MD Anderson(MDA). I have several friends (a few of their top physicians too) who have been treated there for their OC. MDA is one of the top comprehensive cancer centers (CCC) in the US. The tumor board meetings are where all the specialists meet to discuss each individual case. As the patient you are also allowed to attend. If you decide to be there take someone with you for an extra pair of ears and to take notes. Prepare a list of your questions to take with you to the meeting. I suggest asking again about your HPV status. I dont quite understand the weekly HPV status... to me its either a yes or no answer if you're HPV+ or HPV-. The tumor board meeting is the best place to speak openly to get direct input from the many different specialists who are among the top doctors in their field.

Main OCF Site, Understanding/Treatment section

Well they came up with my plan today.....radiation plus low dose cisplatin weekly for 6 weeks. I was a bit surprised by the addition of the chemo but with the way my one positive lymph node looked they decided we needed to hit this hard and help the radiation be more effective. Now fighting Tricare for proton therapy vs imrt. The cost difference is not huge to them so we have already put in an appeal with support from the doctors. Hoping for quick approval. Has anyone else gone through this? It just adds to the worry and frustration experienced with Oral cancer. It’s kind of got me a little down tbh.
So what to expect with the addition of cisplatin (40 mg per week I think they said) to my radiation?

Hi Linda,

I’ve had Proton Radiation in 2013/14 for a recurrence in my cervical neck. What little area they did, took sometimes 40 minutes due to the precise set-up, and changing of the nozzles as it was point and shoot radiation, and only 3 spots, and sometimes it was 3 minutes! MD Anderson has IMPT, Intensity Modulated Proton Therapy, very few do, whereas it has continuous radiation capability thus there is no change in set-up or nozzle, so it’s a faster type with multiple site capabilities.

Previously, Proton Radiation was for recurrences only in the head and neck. MD Anderson had Proton Therapy clinical trial for first line treatment. I believe Proton Radiation is now open to most cancers at this point, but for multiple sites I would do IMPT, Intensity Modulated Proton Therapy.

You’re getting weekly low dose Cisplatin?

Here is a link to The Proton Radiation association:

http://www.proton-therapy.org/howit.htm

Good luck

Hi Paul!
Thank you for your reply! I am so happy to see that proton finally cleared you of this menace. Prayers for a healthy and long life with NED!

They told me that it used to be protocol to do 3 larger doses of cisplatin 3 times during rads. They’ve found that it’s less toxic to the patient to do a smaller amount each week. It’s going to be an interesting adventure. I feel like MD Anderson and the OCF boards has prepared me well for battle, thanks to folks like you and Christine B. They don’t rountinely place a PEG and have you work with the SLP for swallowing exercises in weeks 1,3 and 6. They want you to lose no more than 10% of your body weight, which for me is 16 pounds. They recommend a product called Egyptian Magic and Aquaphor for skin issues. Baking soda and salt rinses starting day one of treatment. Mouth and jaw exercise also starting day one. I feel fortunate to be here.

Linda

Thank you, Linda!

Yes, the three large dose Cisplatin is still pretty much the standard, but if not, for various reasons, so is the weekly smaller dose regime of Cisplatin a close second. After I had Cisplatin years later, and my last chemo, I did weekly small dose carboplatin, which is related to Cisplatin, and was the easiest, thankfully, They’ll closely monitor you, and if necessary, slow the infusion rate to reduce toxicities, stop it or change it to another chemo if necessary. You can have different chemo’s, not finish then all, but they’ll still be working in the body, but more importantly is radiation, besides surgery, that cures this cancer.

Years ago, and not that long ago, it was pretty standard to have a peg from the start. Now they want you to keep working those muscles. They can always fit a nasal tube, if it becomes necessary or fewer times a peg tube during treatment, which can have a risk of infection.

Used aquaphor, warm salt water baking soda rinse, as well as others, but never Egyptian Magic, unless it’s related to magic mouthwash that has about 25 other names, and used that too.

It sounds like you’re in good hands!

The exercises are key! I was treated at Stanford and my SPL was amazing. I could eat solid foods until the very last week of radiation.

I just saw the speech pathologist and she gave me the exercises. Were there any particular ones that helped you more?
Poor lady won’t forget me. I got my first wave of nausea today and threw up in her trash can 🙄. Felt terrible about it! Idk if it’s from the chemo on Tuesday, because I’ve been on top of my Zofran ever since or from the addition of Gabapentin? Anyone have any experience with that?

Linda,

I’ve vomited before, maybe not with the speech pathologist, I recall, but other places, and often, so I would carry tissue and plastic bag in my jacket or pants pocket, and still do sometimes! Last time was several months ago during an interview with a nurse for a study. I was unprepared, but glad there was a sink in the exam room! During treatment, I could blame it on that, but I’m almost 5 years out from my that now, and blame other meds, not eating enough, and too much activity like bus travel, at least for me these days.

Besides a dozen other meds, I take gabapentin. I forget the list of side effects, but you can always read them on the medication insert for any medication or ask the pharmacist, plus telling the doctor, and mentioning it to the SLP.

Hope it clears up soon!
Paul