1. < Head & Neck Cancer

Hypopharyngeal cancer: Anyone treated with proton radiation?

Posted by lisa_sj99 @lisa_sj99, Aug 26, 2016

My husband diagnosed with hypopharyngeal cancer in late June. He had a tonsillectomy and the right tonsil was removed. He will be ready for radiation and chemo treatment next week. Based on our research, we have decided for him to be treated with Proton Pencil Beam radiation in San Diego. Have anyone has the similar cancer and treated with proton radiation? I heard there are still many side effects (I.e. Dry mouth, swelling, skin irritation and fatigue etc.) with proton treatment. What do you use to alleviate the side effects? Thanks!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 10, 2017
In reply to @alpaca "Hello. First time here. I am 2/3 years out from 2nd head and neck cancer recurrence...." + (show)
@alpaca

Hello. First time here. I am 2/3 years out from 2nd head and neck cancer recurrence. My cancer started on the left side of my tongue, recurred there once again and then recurred on the left buccal mucosa. It's hard to know what will happen next - doctors seem to be tight lipped about making any predictions. Is anyone else in this position?

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@adriennef Hello Adriene! I thought I would read some of your posts in order to learn more about you. Girl, you are a miracle, and an extraordinary woman. I am very glad that joined the Connect group as a mentor. I can see where you can be the bright beaken of hope for those who are going through something so scary. For all that you have gone through, I wish I could send you a thousand hugs. -Terri

REPLY
Gareth Seltzer | @garethseltzer | Nov 28, 2022
In reply to @jtw96 "Colleen, yes, I was diagnosed at Mayo with salivary duct carcinoma of the parotid gland with..." + (show)
@jtw96

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.

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I am hugely appreciative of individuals like yourself sharing on the platform. I was diagnosed with Salivary Duct Carcinoma (SDC) in May, 2022. I had a parotidectomy and a full neck dissection followed by seven weeks of radiation therapy at Princess Margaret Hospital in Toronto which finished at the end of August. Obviously we are all aware of the aggressive nature of SDC and its fondness for reoccurrence and spread. I just had my followup CT which suggested a new lesion and so I have an MRI booked in two weeks to dig into that little morsels of anxious news! Presumably that will follow with a biopsy and with good fortune, it will just be some anomaly from the surgical experience.

That said, my priority now is to look for therapies that might suppress reoccurrence as well as to understand and/or participate in any study that will prepare (or arm me perhaps is better) for reoccurrence when it happens. The rarity of this cancer makes it challenging though it seems that HER2 and androgen therapy as well as trastuzumab and other combinations and ideas come up in searches of clinical studies. In any case, I just wanted to put it out there that I will share what I uncover and at the same time would be appreciative if anybody is somewhat ahead of me on this, if they would do the same. Best, Gareth

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 1, 2022
In reply to @garethseltzer "I am hugely appreciative of individuals like yourself sharing on the platform. I was diagnosed with..." + (show)
@garethseltzer

I am hugely appreciative of individuals like yourself sharing on the platform. I was diagnosed with Salivary Duct Carcinoma (SDC) in May, 2022. I had a parotidectomy and a full neck dissection followed by seven weeks of radiation therapy at Princess Margaret Hospital in Toronto which finished at the end of August. Obviously we are all aware of the aggressive nature of SDC and its fondness for reoccurrence and spread. I just had my followup CT which suggested a new lesion and so I have an MRI booked in two weeks to dig into that little morsels of anxious news! Presumably that will follow with a biopsy and with good fortune, it will just be some anomaly from the surgical experience.

That said, my priority now is to look for therapies that might suppress reoccurrence as well as to understand and/or participate in any study that will prepare (or arm me perhaps is better) for reoccurrence when it happens. The rarity of this cancer makes it challenging though it seems that HER2 and androgen therapy as well as trastuzumab and other combinations and ideas come up in searches of clinical studies. In any case, I just wanted to put it out there that I will share what I uncover and at the same time would be appreciative if anybody is somewhat ahead of me on this, if they would do the same. Best, Gareth

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Welcome @garethseltzer. I think @clevyjam will appreciate your post and have some thoughts and guidance for you as one who has walked the path of salivary duct carcinoma before you. You can read more here:

- Salivary Duct Recurrence w/ Trismus and Tinnitus https://connect.mayoclinic.org/discussion/trismus-and-tinnitus/

Here is an open trial being conducted at Mayo Clinic at the moment:
A Study to Evaluate Pemetrexed and Pembrolizumab to Treat Recurrent and/or Metastatic Salivary Gland Malignancies https://www.mayo.edu/research/clinical-trials/cls-20513232

To find out if there are other qualifying trials, international patient can contact Mayo with their clinical studies questions
Phone: 507-284-8884
Email: intl.mcr@mayo.edu

You're in good hands at Princess Margaret Cancer Center. You mention the possibility of a new lesion. Where is it located?

REPLY
clevyjam | @clevyjam | Dec 17, 2022

Hi,

I had a recurrence of salivary duct and this time did proton beam. You get fitted with a mask. The actual beam takes a short time but they need to position you in the same spot each time and sometimes that process can be a little long and frustrating.

The side effects I got were skin darkening, dry mouth and mouth sores. By about week 4 I had to gargle with lidocaine to eat. There was some loss of taste but nothing like with IMRT which I had before.

I’m a year out and I have most of my saliva back. My tongue still tingles with certain food but overall I can eat most things.

I did however get severe trismus that affects my mouth opening but I’m not sure if that’s the surgery or the radiation because it began before the radiation started

Hope this helps

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