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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Liz1 | @elizabethbryant | Dec 28, 2016
In reply to @colleenyoung "Hi @elizabethbryant, I hear the frustration in your messages. I'd like to offer some resources for..." + (show)
@colleenyoung

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?

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Collen the doctor said most of these were for cervical dysplasia, I am just not getting the medical care I need. I need
someplace in this country that specializes in tongue cancer and severe dysplasia.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 29, 2016
In reply to @elizabethbryant "Thanks for your information. I have severe tongue dysplasia and have had part of my tongue..." + (show)
@elizabethbryant

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???

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Hi Elizabeth, If you would like to get a second opinion from experts at Mayo Clinic, please call the Rochester number here: http://mayocl.in/1mtmR63

REPLY
Liz1 | @elizabethbryant | Dec 29, 2016
In reply to @elizabethbryant "Thanks for your information. I have severe tongue dysplasia and have had part of my tongue..." + (show)
@elizabethbryant

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???

Jump to this post

Hi Colleen, I would like one question answered. Is there a treatment for oral dysplasia. To decrease inflamation can steriods be
used. I live in Va.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 29, 2016
In reply to @elizabethbryant "Thanks for your information. I have severe tongue dysplasia and have had part of my tongue..." + (show)
@elizabethbryant

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???

Jump to this post

Elizabeth, Please call Mayo 507-538-3270. They will be able to advise you on treatment, specially to your situation.

REPLY
loli | @loli | Jan 5, 2017
In reply to @colleenyoung "Hi @elizabethbryant, I hear the frustration in your messages. I'd like to offer some resources for..." + (show)
@colleenyoung

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?

Jump to this post

Try the Mayo Clinic in Scottsdale, Arizona. Doctors there are the best. I was there with my sister just last month. She had tongue cancer 17 years ago, and jaw bone cancer in November. You do not believe how effective this doctors are. Indeed a miracle.

REPLY
loli | @loli | Jan 5, 2017

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.

REPLY
17 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 5, 2017
In reply to @loli "I had cheek cancer three years ago, and was treated with surgery and radiation. At that..." + (show)
@loli

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.

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Welcome to Connect, @loli. Thank you for sharing your story and your sister's. What tips do you have for managing the dry mouth and recurring mouth infections?

REPLY
loli | @loli | Jan 5, 2017
In reply to @loli "I had cheek cancer three years ago, and was treated with surgery and radiation. At that..." + (show)
@loli

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.

Jump to this post

Mouth infections stopped after the doctor extracted two of my molars. Radiation caused my gums to recede, exposing the roots. I am always very careful in maintaining my mouth clean. I use a water pick to clean my mouth, and that helps a lot. When you do not have enough saliva, food really sticks to your mouth. I also rinse with chlorhexidine twice a day. This also helps with dry mouth.Dry mouth does not affect me so much during the day, and if it becomes a problem, I drink a little organic apple vinegar. Now I now that when Jesus was on the cross and someone gave him vinegar when he was thirsty, he was really doing him a favor. Vinegar promotes saliva production, and it is good for reflux and digestion! At night, I use Xylimelts if I am desperate. Also, I take a glass with water and lemon juice and drink at night if I wake up with my mouth like a piece of cardboard. I tried having a vaporizer, and it helped a little bit but not much. Funny, because when we go to the beach and sleep with the windows open, I never wake up with a dry mouth.I hope this was helpful.

REPLY
Liz1 | @elizabethbryant | Jan 5, 2017
In reply to @loli "I had cheek cancer three years ago, and was treated with surgery and radiation. At that..." + (show)
@loli

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.

Jump to this post

Your iinformation is excellent and views also. If I might ask........if you could tell me anything you may know about
proton radiation in regards to treating the base of tongue after cancer surgery removing stage 1 cancer now turned into
severe dyplasiaa (pre cancer) which I am told by John Hopkins
needs to be removed. UVA states radiation or just watch. Severe dysplasia can have cancer cells. A partical removal of the tongue
to rid it of stage one superficial cancer was done April 6 at John Hopkins and I was told to have radiaion but didn't because I continued
to have pain which was unusual as the pain never left after surgery.
Some of this pain could be licken plantus again two biopsy show severe dysplasia. I realize I am repeating myself. Thank you
for the excellent information. Especially regarding radiation. I believe your doctor is saying removal rather than radiation.
i will awaiting your response.......with sincere appreciation.

REPLY
Liz1 | @elizabethbryant | Jan 5, 2017
In reply to @loli "I had cheek cancer three years ago, and was treated with surgery and radiation. At that..." + (show)
@loli

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.

Jump to this post

@
How about the after care. I live in VA. but would be willing to travel for excellent care. The doctor and facility are very important.
Proton radiation, uncertain, good and bad results.
Comprehensive care needed with good surgeon.

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