Hypopharyngeal cancer: Anyone treated with proton radiation?

I haven't had proton radiation but just the usual IMRT. There are certainly side effects, some short term and others long term, mainly to do with lack of saliva and its effect on the teeth. Do you know if his salivary glands will be affected? They try to protect them. Even with the side effects, I look at radiation therapy as a life saver and there is a lot of material out there about care of the mouth after it. My group is here: http://www.headandneck.network

@lzzie How are you. Tell me about your surgery and after surgery when you
have a moment.......Thanks ........Elizabeth

Sylvia, I was diagnosed with the same disease as your husband in March. Would you be so kind as to exchange info by email? Please private message me. I would be very grateful. Joe

Hi Joe,
Welcome to Connect. You'll notice that I removed your personal email from your message. To exchange personal contact information with another member, we recommend using the private message function. We don't want you to get unwanted spam.

I can understand your wanting to connect with Sylvia privately. Please keep in mind that sharing on the forum affords the benefit of hearing from several people with salivary duct cancer. Joe, we look forward to getting to know more about you. If your comfortable shareing, can you tell us what treatments you've had or are having? How are you doing?

Colleen, yes, I was diagnosed at Mayo with salivary duct carcinoma of the parotid gland with distant metastasis stage 4. The cancer tested androgen receptor positive. I am 10 weeks into 12 weeks of my first treatment - androgen deprivation therapy or hormone therapy. Only mild side-effects. Decisions on staying the course or changing therapies are upcoming this month. Sylvia's husband is the only person I have found to have the same cancer. It would be helpful to hear from others with this rare cancer. Thanks.

Joe, Ken completed his 11th immune therapy treatment today with Keytruda. His recent scan showed mixed results, but the tumors are measuring in millimeters rather than centimeters now, so we are thrilled. We hope to complete 17 infusions before a break.
I am interested to hear of your progress with androgen deprivation therapy.

Hi all, I want to let you know about a video Q&A that we are hosting tomorrow, June 2 here on Connect. Dr. Daniel Ma and Dr. Eric Moore will talk about tonsil and base of tongue cancer, human papilloma virus (HPV) and its relationship to cancers in the throat. They'll also discuss state of the art care and clinical trials for treatment of patients with HPV-related cancer.

I hope you can join us. You can read more and watch the video here: http://mayocl.in/2suic7t

Hi @alpaca ! I just joined Mayo Clinic Connect, and am scrolling through this "head and neck cancer" thread as I have been through six bouts of oral cancer over the past 10 years. I'm curious about your botox in your lower lip. I have the same problem with mine. Does insurance cover the botox or is it considered "cosmetic"? I know all insurance is different, but I am curious! Thanks!

Me again 🙂 I guess I should have kept scrolling- we seem to have a lot in common!

I have had very similar responses from doctors. You and I are probably wild cards, and doctors haven't seen many patients that have necessarily fit our patterns. I beg my doctor each time to pull out his crystal ball and give me something, but I can't get it out of him 🙂 On one hand, it really sucks. I want to know what my prognosis might be. BUT, after six bouts of cancer, I recognize that tomorrow is not guaranteed in a way that only survivors know. I am living each day intentionally, trying to make as many memories with my six year-old as possible, not knowing what the future might be.

Here is a snapshot of my story (FYI @jamienolson):

2007: I was diagnosed with squamous cell carcinoma in my tongue at age 24. It was not HPV related. I had a partial glossectomy and neck dissection. The surgeon left positive margins in my tongue, so I sought out a new surgeon. I underwent a second surgery, chemotherapy (erbitux), and six weeks of IMRT.

2008: A little over a year later the cancer recurred in the lymph nodes in my neck. At this point, my doctors recommended cisplatin for chemo, so I ended up going through fertility preservation and freezing my eggs. Had another major surgery (removed muscle, cut nerves, removed many levels of lymph nodes in right neck), chemo (cisplatin and taxol), and six weeks of IMRT.

2013: I made it ALMOST FIVE YEARS, and became a mother during that time. Then, in 2013, cancer was found in the floor of my mouth. I only had surgery for treatment because radiation wasn't an option (the tissue had already sustained so much radiation) and chemo alone didn't make sense (it didn't seem necessary as I wasn't at a palliative stage).

2014: Throughout 2014 I dealt with a lot of pain and doctors thought I had osteoradionecrosis. We found out at the end of the year that it was cancer that had infiltrated my jawbone.

2015: I went down to MD Anderson and found fantastic surgeons (although I am quite a big fan of Mayo these days!). They removed my mandible and rebuilt it with my fibula. I also managed to get a tummy tuck out of it (hey, you gotta get every perk out of this you can!). I had a tracheotomy and feeding tube put in. The surgery had negative margins, and I thought I was in the clear. I didn't make it three months before the cancer returned. This time in my soft palate. Different surgeon attempted to remove it and left positive margins. He decided it was too big to remove without affecting my quality of life. Spent the summer getting chemo (carboplatin and taxol). My soft palate "healed" up and no gross tumor has returned there. A miracle! However, that December, I noticed two lymph nodes on the left side of my neck (all cancer thus far had been on the right side).

2016: Began immunotherapy clinical trial at Mayo. Cancer seemed to respond for a month or two and then started growing exponentially. Dr. Moore at Mayo performed a surgery in July to remove the malignant lymph nodes. I followed up with proton beam radiation and chemo (carboplatin and erbitux). December: CT WITH NO EVIDENCE OF DISEASE!

2017: CT every three months. No evidence of disease so far!

Hi Adrienne. i am in New Zealand - no insurance issues. I now get Botox at a Procedures Clinic where they use it for laryngectomees for their stomas and other people who need it for clinical reasons. The Botox is in my parotid glands to lessen the saliva that dribbles out of my limp lip. I have to balance it carefully to avoid dry mouth and thrush. I've had three bouts over 10 years. Bit of a veteran now!