Head and neck cancer

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!

@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.

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@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

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@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 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.

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

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@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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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.

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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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@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?

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@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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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.

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@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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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.

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@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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@
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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@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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Elizabeth,
What you need to do, is to find a doctor that you trust. We share a couple of things. I am from Virginia as well, and my cancer was a result of Liquen Planus too. My first choice of doctor, was Dr Hinni, at the Mayo Clinic in Scottsdale; but he could not see me as soon as I wanted. The second recommendation was Dr Strome at University of Maryland in Baltimore, which was closer to home. Dr. Strome operated and took all the cancer out, and the liquen planus in that area too. I have a flap that was taken from my left arm. Surgery was a complete success. Dr. Strome did not require that I should have radiation, but I was bombarded with friend doctors opinions that I should. What really made my mind up, was talking to another patient at the doctor’s office, that had had surgery and not radiation, and the cancer had come back within 6 months. Now, he needed radiation and another surgery. So I went ahead with radiation. But I trust Dr. Strome a 100%.
Now; I had the opportunity to see Dr. Hinni and his team work with my sister. I was amazed. The facilities at Mayo are excellent. My sister rented a house close to the hospital, and her two children and I took turns at the hospital. She recuperated so fast. I am truly amazed. Look this two doctors up. Dr Hinni operated on Senator John McCain in 2000. It is public knowledge, and I found it in the internet. Both doctors are the heads of their departments of head and neck.
I do not know very much about proton radiation. The way the beam enters the body is controlled so it only goes to a 100% when it reaches the tumor. In regular radiation, the beam enters at a 100% and affects all the path to the tumor. They have now proton facilities at both hospitals I mentioned.
Fortunately for me, the liquen planus I had, was pain free. I can only sympathize with you, because when I went through radiation, the burns in my mouth were so painful, I lost 35 pounds in six weeks.
Let me know your progress, and I would be delighted to help you in any way.
Loli

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@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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I am very interested in Dr. Hinni. I have painful lichen planus and two biospies have revealed severe displasia. Again,
my surgery was done April 6 and the pain never left enough to do radiation. I was not offered proton radiation and
I understand that it is very painful also. My experience in Baltimore at John Hopkins is something I am not willing
to repeat. I understand, not to be negative , but careful this time, I was told I would be sipping I chips myself for three
days after surgery at John Hopkins……o.k. Then I have the surgery which was awful and lie in hosptial gown
covered in surgery room mess for three days. The HOSPTAL HAS NO ICE CHIPS, therefore I am given steriod
shot and still the swelling and the middle of he night my tongue swells so, may have to run an airway tube or
traci so I can get air. I am told after this that I will be going home even the day of surgery. (Major Surgery by the
hospital, the doc says when your ready and can swallow. My family is beside themselves with the whole situation
there is no place for family to eat, the food is subway and such shops in the hospital.
I understand by U.S. News & World report that Maryland Hospitals (including John Hopkins have the worst after care
in the country) These are just the facts and my family is oppose to me going back and don’t feel I am getting
the medical care I need.
I don’t mean to sound so negative I really don’t. Now I have severe dysplasia from the front of the underside of my
tongue to the back plus lichen planus also. All on right side only.
One thing good at John Hopkins was that they have what is called ” housing accomadation” you call John Hopkins
accomadation and they have contracted rates with certain hotels that guarantee room for however long one need
to stay at John Hopkins rate. If you come for a test on Tuesday and you need to stay longer the hotel has to
reserve your room for longer. The hotel also had a shuttle which was great that picked you up from the travel
station and other places (family) one the hour out and back on the half hour. I guess it is because it is in Baltimore
downtwon conjested traffic. No eating very noisey to even sleep in hotel.
The surgeon was very good, but I don’t understand why the surgeons were not raising heck about no ice chips
and such. Is Mayo a research hospital aso? I called but it doesn’t seem one is able to talk directly to the ENT Mayo
Department. Until after one has been seen at Mayo, with no alot of information and you know we are flying from
Virginia. What is the best day of the week for your appointment. I took Amtrak to Baltimore and weekends including
Sunday were not good. Any additional info. you can give is greatly appreciated. Your experience is very interesting.
It sounds like it took you and 2 of your sister’s children to take of your sister. Thanks.
.

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@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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I am so sorry you had to go through all of this.
When making a decision about my care, we did not go for the institution, but for the doctor.
My stay at the hospital was for ten days. I was kept under sedation for the first four days. I had so many tubes connected to my body! Maybe 7. I could not move, talk or even raise my hand. I did not see double, but triple. I could not communicate. I did see things that I am sure were not real. All I can think about is that I was so grateful. Grateful that I had had 61 years of health. Grateful to the nurses that had to clean my body daily. Grateful to my husband that could interpret the look in my eyes. He was the only contact I had with the world. And grateful to Dr. Strome whom I could hear coming down the hall, with four or five young doctors lucky to be under his wing.
It was tough, but I was tougher.
When I went through radiation, we stayed at Hope House in Baltimore, sponsored by the Cancer Society. We stayed there with a lot of people from Johns Hopkins. We heard a lot of complaining. A lot of cancelations for radiation therapy because machines were not working. The experience at Hope House was priceless. We called the radiation therapy the tanning booth! We became family with 80 other people. The great thing is that every one of us thought that our cancer was the lesser. We cared for each other, as I care for you now.
Making an appointment with Dr. Hinni, is not easy. You have to call and call and persevere. I think it would help if you register at Mayo and they give you a number which will identify you. Someone here will assist you, I am sure. In the mean time, gather all your info and make a book with it.Use dividers: One for doctors, one for medications, one for test results. Write all your questions and concerns.. All the treatments you have researched. Make this a crusade! Get exited. Make it a life project! And if you have to go through radiation, so be it. I am here, and happy to be alive. It is a blessing to live in this country and have access to the best medical care in the world.
I will get Dr. Hinni’s phone number from my sister, not tomorrow, but the day after. She has been released and will be traveling home tomorrow.

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@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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Hi, thanks for the good info. Your experience sounds much worse than mine. I awaken from surgery and none of the tubes
running through me, except an IV and the tube draining from the lymph node surgery. The lymph nodes were taken out
as a precaution. I was able to use a surenge (Sp) to feed myself the second day and put the food down the good side
of my throat. So I would consider my surgery easier than what you have described. The third day I wanted out of those
operating room cloths and took a shower, still had an IV and washed my hair and body. I was up, ordering my food from
a menu, all pura. shooting down the good side at the back of my tongue. But is was the worse thing I have ever encountered
in my life. You are so POSITIVE and had such good support. I wonder if the environment is better at Mayo and you are
cared for as well. I had a good surgeon, but the entire set up for food for family and everything was out of order with
mixed messages.
Your medical experience sounds much worse than mine for the tongue surgery, I had a skin graft from my thigh.
Do you know the difference between an arm flap and a skin graft?
Perhaps also I am expecting better care and it is not available in this country. I have the number and have spoken with
Mayo. That much is taken care of. Doing all this myself, I just have few records as far as the technology goes
as it was so poor at John Hopkins, but some of the surgeons are excellent, my was but he left and went to Boston.

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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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