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!

Hello @alpaca,

Welcome to Connect. I’m sorry to learn of your cancer, but glad that you’ve come to the Connect community to find some answers.
You’ll notice that I moved your message to a discussion that was started a while back. Please feel free to read back through the messages, and tag other members for more information.

I hope @lisa_sj99 @mrsjhagen18 @sylviapf @lzzie @loli @elizabethbryant, will also join the conversation. While they don’t have the exact same cancer, I’m sure they can offer some thoughts and insight.

@alpaca, have you considered getting a second opinion?

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@kanaazpereira

Hello @alpaca,

Welcome to Connect. I’m sorry to learn of your cancer, but glad that you’ve come to the Connect community to find some answers.
You’ll notice that I moved your message to a discussion that was started a while back. Please feel free to read back through the messages, and tag other members for more information.

I hope @lisa_sj99 @mrsjhagen18 @sylviapf @lzzie @loli @elizabethbryant, will also join the conversation. While they don’t have the exact same cancer, I’m sure they can offer some thoughts and insight.

@alpaca, have you considered getting a second opinion?

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Thank you! I’m in New Zealand. Small country; seen by top doctors. Second opinion not really an option in this particular case but I appreciate your suggestion and would usually recommend a second opinion to anyone doubtful about their diagnosis. I just wondered if there was anyone out there who suffered from repeated malignancies, maybe new primaries of SCC in the oral cavity. I haven’t met anyone in New Zealand yet. On the plus side I had rads after third surgery to “prevent cancer coming back on that side of the mouth”. Did it work? Will it work? I guess only time will tell.

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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 identify with all your points the tubes and seeing double or triple. I so hated that. Also, the radiation machines breaking down but the friendliness of the radiation treatment people. Very impressed by the book with dividers. Good tip.

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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 and others, I had lichen planus too … then it turned into a painful patch on my tongue which in turn became squamous cell carcinoma. There was dysplasia but I wasn’t aware of that, just of the lichen planus lesion which sometimes kept me awake at night. Cortisone/steroids helped a lot with the pain of lichen planus. I’ve had two big reconstructive flap surgeries. Half my tongue is a flap from my left wrist and a patch for my left inside cheek was made from my right wrist. Both sites look pretty good now and I am quite well apart from the loss of teeth (and uncomfortable plate) and a tight dragging feeling on the left side where I lost a nerve. My left lower lip is numb and droops but I have had Botox to help stop the drooling!
Going back to pain of lichen planus and dysplasia … Does a bland diet help? I still can’t eat anything too acidic and custard and milkshakes are my favourite foods:)

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@kanaazpereira

Hello @alpaca,

Welcome to Connect. I’m sorry to learn of your cancer, but glad that you’ve come to the Connect community to find some answers.
You’ll notice that I moved your message to a discussion that was started a while back. Please feel free to read back through the messages, and tag other members for more information.

I hope @lisa_sj99 @mrsjhagen18 @sylviapf @lzzie @loli @elizabethbryant, will also join the conversation. While they don’t have the exact same cancer, I’m sure they can offer some thoughts and insight.

@alpaca, have you considered getting a second opinion?

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Hi Alpaca,

I am sorry that C keeps coming back! How many treatments of rad did you have? Fortunately, my lichen planus was pain free. My sister had tongue cancer 17 years ago, with one recurrence last year and one year later, jaw bone cancer, which was treated in early December. Is your cancer related to HPV, or just as a result of lichen planus?

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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 had a skin graft from my thigh, to repair the arm flap for my cheek. So I guess a skin graft is just a piece of skin and the flap includes flesh and veins, though I am not sure.

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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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Did you loose your taste with radiation?

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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 DID NOT HAVE RADIATION BUT NOW HAVE SEVERE DYSPLASIA AND LICHEN PLANUS. DOCTORS DON’T KNOW
WHERE TO GO FROM HERE. PRAYING FOR WISDOM FOR ME AND THE DOCS. MY DOC MOVED TO BOSTON AND
SAID THE SEVERE DYSPLASIA HAS TO BE REMOVED, WHICH IS A LOT.

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@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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i AM NEW HERE ALSO, APPEARS AS THOUGH IF ONE HAS THE BEST ENT DOCTORS- ROBOTIC SURGEONS THEY
KNOW WHAT TO DO.

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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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what is the sugar content in milk shakes and custard. raw baby kale, split pea soup, Budwig Protocol is like a milkshake
and is theory on cancer treatment. The doc. told me to put Gavison antacid on the lichen planus to coat it.
I wonder if the doctors at Mayo in Scottsdale Arizona can help.

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I’d like to add my welcome, @alpaca. We have another Kiwi in our Head & Neck group. Please meet @lzzie.
You may also be interested in this discussion:
– Mouth sores, no taste and no saliva and other side effects http://mayocl.in/2bGXo9g

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@kanaazpereira

Hello @alpaca,

Welcome to Connect. I’m sorry to learn of your cancer, but glad that you’ve come to the Connect community to find some answers.
You’ll notice that I moved your message to a discussion that was started a while back. Please feel free to read back through the messages, and tag other members for more information.

I hope @lisa_sj99 @mrsjhagen18 @sylviapf @lzzie @loli @elizabethbryant, will also join the conversation. While they don’t have the exact same cancer, I’m sure they can offer some thoughts and insight.

@alpaca, have you considered getting a second opinion?

Jump to this post

Hi. I never smoked, drank, didn’t have HPV – just the lichen planus plus lifelong dental problems. I had the standard rad treatment for patients after surgery of 30 at 60 grays. It’s nearly three years ago now but seems like yesterday.

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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.

Jump to this post

I don’t worry too much about the sugar content … probably should but some sugar is inevitable I think. I can eat yoghurt now but can remember a time when even that was too acidic. I know some people can’t eat milky foods but they have been very soothing for me. Most really soft vegetables are good too. Potato, pumpkin, sweet potato, carrot … I mash spinach in with them and cover in gravy or butter. It’s very difficult when a lot of your mouth is affected. I hope you can get some answers soon.

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I never smoked drank and don’t have HPV which would have been good I understand as it is a virus. I did not have the radiation after surgery removing
the stage one superficial cancer. As of a week ago the ENT at UVA said the pain is coming from the Lichone planus. The biopsies show
severe dysplasia. which is pre cancer. I looked up Dr. Hinni at Mayo and he has mixed reviews.
I have been drinking drops of food grade Frankcense (John Hopkins alternative medicine, a few, drops in DeerPark water. High in MZH. It can’t hurt.
The Budwig diet is sort of a milk shake but is a cancer protocol. I changed my diet completly. The surgery was awful. The Pet scan nurse told me
as she put the IV in for the Pet Scan to locate the cancer, this is sugar and some radiation and it will carry it show us the cancer. Cancer grows on sugar.

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@colleenyoung

I’d like to add my welcome, @alpaca. We have another Kiwi in our Head & Neck group. Please meet @lzzie.
You may also be interested in this discussion:
– Mouth sores, no taste and no saliva and other side effects http://mayocl.in/2bGXo9g

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Hello! Liz and i are already good buddies on our FB page. She has been an inspirational figure:)

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