Hypopharyngeal cancer: Anyone treated with proton radiation?

Hi @elizabethbryant,
I hear the frustration in your messages. I'd like to offer some resources for finding clinical trials. The best place to start your search is the clinical trial registry that the U.S. National Institutes of Health maintains. Go here: https://clinicaltrials.gov
I put in the search terms "oral epithelial dysplasia" and got these 52 results https://clinicaltrials.gov/ct2/results?term=Oral+epithelial+dysplasia&Search=Search
As you can see from the list some of the studies are still recruiting participants while others are completed. Each trial lists the the eligibility criteria. Your doctor can help you determine which trials you may be eligible for. You can also read more about clinical trial eligibility here: https://clinicaltrials.gov/ct2/about-studies/learn

Interestingly, I received an email from a colleague about a trial here at Mayo Clinic for people who have had oropharyngeal tumors removed. You have to be a Mayo patient to participate. It's not specifically about treatment for dysplasia, but I thought you might be interested in reading about it and to research proton-beam therapy.

- A Study of Using Proton Beam Therapy Which Spares Mucosal Tissue Following the Removal of Oropharyngeal Tumors http://www.mayo.edu/research/clinical-trials/cls-20200701

What was the result of your appointment with your doctor on Tuesday?

Thanks for your information. I have severe tongue dysplasia and have had part of my tongue removed. I have been told by John Hopkins and UVA
that chemotherapy does not work well on this area. So I am a little puzzled. This gets more confusing. What is immune therapy???

Thanks for your information. I have severe tongue dysplasia and have had part of my tongue removed. I have been told by John Hopkins and UVA
that chemotherapy does not work well on this area. So I am a little puzzled. This gets more confusing. What is immune therapy???

Thanks for your information. I have severe tongue dysplasia and have had part of my tongue removed. I have been told by John Hopkins and UVA
that chemotherapy does not work well on this area. So I am a little puzzled. This gets more confusing. What is immune therapy???

Hi @elizabethbryant,
I hear the frustration in your messages. I'd like to offer some resources for finding clinical trials. The best place to start your search is the clinical trial registry that the U.S. National Institutes of Health maintains. Go here: https://clinicaltrials.gov
I put in the search terms "oral epithelial dysplasia" and got these 52 results https://clinicaltrials.gov/ct2/results?term=Oral+epithelial+dysplasia&Search=Search
As you can see from the list some of the studies are still recruiting participants while others are completed. Each trial lists the the eligibility criteria. Your doctor can help you determine which trials you may be eligible for. You can also read more about clinical trial eligibility here: https://clinicaltrials.gov/ct2/about-studies/learn

Interestingly, I received an email from a colleague about a trial here at Mayo Clinic for people who have had oropharyngeal tumors removed. You have to be a Mayo patient to participate. It's not specifically about treatment for dysplasia, but I thought you might be interested in reading about it and to research proton-beam therapy.

- A Study of Using Proton Beam Therapy Which Spares Mucosal Tissue Following the Removal of Oropharyngeal Tumors http://www.mayo.edu/research/clinical-trials/cls-20200701

What was the result of your appointment with your doctor on Tuesday?

I had cheek cancer three years ago, and was treated with surgery and radiation. At that time, proton radiation was not available in my area. My sister, had tongue cancer 17 years ago at the Mayo Clinic in Scottsdale. She had no radiation. In December, she had jaw bone cancer removed at the Mayo, by the same doctor, who I will call doctor H. I was there with my sister, and had the opportunity for doctor H. to review my case. The one thing he told me is that you can remove cancer, but you cannot get rid of radiation side effects. My recommendation is to have a second opinion about radiation. I know that in some cases, depending on the cancer and the stage, you cannot avoid it. But you know, I can deal with dry mouth, lose of teeth, recurring mouth infections, lose of thyroid function. They only remind me of my humanity, and have made me more aware of being more caring for others.

I had cheek cancer three years ago, and was treated with surgery and radiation. At that time, proton radiation was not available in my area. My sister, had tongue cancer 17 years ago at the Mayo Clinic in Scottsdale. She had no radiation. In December, she had jaw bone cancer removed at the Mayo, by the same doctor, who I will call doctor H. I was there with my sister, and had the opportunity for doctor H. to review my case. The one thing he told me is that you can remove cancer, but you cannot get rid of radiation side effects. My recommendation is to have a second opinion about radiation. I know that in some cases, depending on the cancer and the stage, you cannot avoid it. But you know, I can deal with dry mouth, lose of teeth, recurring mouth infections, lose of thyroid function. They only remind me of my humanity, and have made me more aware of being more caring for others.

I had cheek cancer three years ago, and was treated with surgery and radiation. At that time, proton radiation was not available in my area. My sister, had tongue cancer 17 years ago at the Mayo Clinic in Scottsdale. She had no radiation. In December, she had jaw bone cancer removed at the Mayo, by the same doctor, who I will call doctor H. I was there with my sister, and had the opportunity for doctor H. to review my case. The one thing he told me is that you can remove cancer, but you cannot get rid of radiation side effects. My recommendation is to have a second opinion about radiation. I know that in some cases, depending on the cancer and the stage, you cannot avoid it. But you know, I can deal with dry mouth, lose of teeth, recurring mouth infections, lose of thyroid function. They only remind me of my humanity, and have made me more aware of being more caring for others.

I had cheek cancer three years ago, and was treated with surgery and radiation. At that time, proton radiation was not available in my area. My sister, had tongue cancer 17 years ago at the Mayo Clinic in Scottsdale. She had no radiation. In December, she had jaw bone cancer removed at the Mayo, by the same doctor, who I will call doctor H. I was there with my sister, and had the opportunity for doctor H. to review my case. The one thing he told me is that you can remove cancer, but you cannot get rid of radiation side effects. My recommendation is to have a second opinion about radiation. I know that in some cases, depending on the cancer and the stage, you cannot avoid it. But you know, I can deal with dry mouth, lose of teeth, recurring mouth infections, lose of thyroid function. They only remind me of my humanity, and have made me more aware of being more caring for others.