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!

Ginger can be to piquant for your condition, so try fresh turmeric instead. You can add spinach or kale.

I am making a smoothie Organic celery, apple, cucumber and kale. I use powder turmeric mix in mint oil base on the affected area
for inflamation at bedtime. Thanks for the good info.

@elizabethbryant

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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I agree that reducing sugar in one’s diet is healthy. However, according to this article from Mayo Clinic (http://mayocl.in/1AYw0Uw) sugar does not make cancer cells grow. Here is an excerpt:

– Myth: People with cancer shouldn’t eat sugar, since it can cause cancer to grow faster.
– Fact: Sugar doesn’t make cancer grow faster. All cells, including cancer cells, depend on blood sugar (glucose) for energy. But giving more sugar to cancer cells doesn’t speed their growth. Likewise, depriving cancer cells of sugar doesn’t slow their growth.

This misconception may be based in part on a misunderstanding of positron emission tomography (PET) scans, which use a small amount of radioactive tracer — typically a form of glucose. All tissues in your body absorb some of this tracer, but tissues that are using more energy — including cancer cells — absorb greater amounts. For this reason, some people have concluded that cancer cells grow faster on sugar. But this isn’t true.

However, there is some evidence that consuming large amounts of sugar is associated with an increased risk of certain cancers, including esophageal cancer. It can also lead to weight gain and increase the risk of obesity and diabetes, which may increase the risk of cancer.

****
Interestingly, I found the Mayo Clinic article by way of our New Zealand friends on the website of the Head and Neck Cancer Survivors’ Support Network. You can read more in the article “Debunking cancer myths” http://www.headandneck.network/news/debunking-cancer-myths. Thank you for pointing me in this direction, @alpaca.

Liked by loli

Thank you for the invaluable information about sugar.

You are very welcome. I’m glad Colleen linked you to the information.

I haven’t had proton radiation but just the usual IMRT. There are certainly side effects, some short term and others long term, mainly to do with lack of saliva and its effect on the teeth. Do you know if his salivary glands will be affected? They try to protect them. Even with the side effects, I look at radiation therapy as a life saver and there is a lot of material out there about care of the mouth after it. My group is here: http://www.headandneck.network

@lzzie How are you. Tell me about your surgery and after surgery when you
have a moment…….Thanks ……..Elizabeth

@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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Sylvia, I was diagnosed with the same disease as your husband in March. Would you be so kind as to exchange info by email? Please private message me. I would be very grateful. Joe

@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 Joe,
Welcome to Connect. You’ll notice that I removed your personal email from your message. To exchange personal contact information with another member, we recommend using the private message function. We don’t want you to get unwanted spam.

I can understand your wanting to connect with Sylvia privately. Please keep in mind that sharing on the forum affords the benefit of hearing from several people with salivary duct cancer. Joe, we look forward to getting to know more about you. If your comfortable shareing, can you tell us what treatments you’ve had or are having? How are you doing?

@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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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.

@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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Joe, Ken completed his 11th immune therapy treatment today with Keytruda. His recent scan showed mixed results, but the tumors are measuring in millimeters rather than centimeters now, so we are thrilled. We hope to complete 17 infusions before a break.
I am interested to hear of your progress with androgen deprivation therapy.

Hi all, I want to let you know about a video Q&A that we are hosting tomorrow, June 2 here on Connect. Dr. Daniel Ma and Dr. Eric Moore will talk about tonsil and base of tongue cancer, human papilloma virus (HPV) and its relationship to cancers in the throat. They’ll also discuss state of the art care and clinical trials for treatment of patients with HPV-related cancer.

I hope you can join us. You can read more and watch the video here: http://mayocl.in/2suic7t

@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 @alpaca ! I just joined Mayo Clinic Connect, and am scrolling through this “head and neck cancer” thread as I have been through six bouts of oral cancer over the past 10 years. I’m curious about your botox in your lower lip. I have the same problem with mine. Does insurance cover the botox or is it considered “cosmetic”? I know all insurance is different, but I am curious! Thanks!

@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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Me again 🙂 I guess I should have kept scrolling- we seem to have a lot in common!

I have had very similar responses from doctors. You and I are probably wild cards, and doctors haven’t seen many patients that have necessarily fit our patterns. I beg my doctor each time to pull out his crystal ball and give me something, but I can’t get it out of him 🙂 On one hand, it really sucks. I want to know what my prognosis might be. BUT, after six bouts of cancer, I recognize that tomorrow is not guaranteed in a way that only survivors know. I am living each day intentionally, trying to make as many memories with my six year-old as possible, not knowing what the future might be.

Here is a snapshot of my story (FYI @jamienolson):

2007: I was diagnosed with squamous cell carcinoma in my tongue at age 24. It was not HPV related. I had a partial glossectomy and neck dissection. The surgeon left positive margins in my tongue, so I sought out a new surgeon. I underwent a second surgery, chemotherapy (erbitux), and six weeks of IMRT.

2008: A little over a year later the cancer recurred in the lymph nodes in my neck. At this point, my doctors recommended cisplatin for chemo, so I ended up going through fertility preservation and freezing my eggs. Had another major surgery (removed muscle, cut nerves, removed many levels of lymph nodes in right neck), chemo (cisplatin and taxol), and six weeks of IMRT.

2013: I made it ALMOST FIVE YEARS, and became a mother during that time. Then, in 2013, cancer was found in the floor of my mouth. I only had surgery for treatment because radiation wasn’t an option (the tissue had already sustained so much radiation) and chemo alone didn’t make sense (it didn’t seem necessary as I wasn’t at a palliative stage).

2014: Throughout 2014 I dealt with a lot of pain and doctors thought I had osteoradionecrosis. We found out at the end of the year that it was cancer that had infiltrated my jawbone.

2015: I went down to MD Anderson and found fantastic surgeons (although I am quite a big fan of Mayo these days!). They removed my mandible and rebuilt it with my fibula. I also managed to get a tummy tuck out of it (hey, you gotta get every perk out of this you can!). I had a tracheotomy and feeding tube put in. The surgery had negative margins, and I thought I was in the clear. I didn’t make it three months before the cancer returned. This time in my soft palate. Different surgeon attempted to remove it and left positive margins. He decided it was too big to remove without affecting my quality of life. Spent the summer getting chemo (carboplatin and taxol). My soft palate “healed” up and no gross tumor has returned there. A miracle! However, that December, I noticed two lymph nodes on the left side of my neck (all cancer thus far had been on the right side).

2016: Began immunotherapy clinical trial at Mayo. Cancer seemed to respond for a month or two and then started growing exponentially. Dr. Moore at Mayo performed a surgery in July to remove the malignant lymph nodes. I followed up with proton beam radiation and chemo (carboplatin and erbitux). December: CT WITH NO EVIDENCE OF DISEASE!

2017: CT every three months. No evidence of disease so far!

Liked by Jamie Olson

@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 Adrienne. i am in New Zealand – no insurance issues. I now get Botox at a Procedures Clinic where they use it for laryngectomees for their stomas and other people who need it for clinical reasons. The Botox is in my parotid glands to lessen the saliva that dribbles out of my limp lip. I have to balance it carefully to avoid dry mouth and thrush. I’ve had three bouts over 10 years. Bit of a veteran now!

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