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The Head and Neck CancerConnect Community is for everyone whose life has been touched by a head and neck cancer. It is a place where you can safely voice your ideas, thoughts, and concerns, benefit from the experience of others, and most importantly, realize that you are not alone. This community is for you and about you.

Registering for the CancerConnect Community will enable you to ask questions, share your experiences, and gain knowledge from others who are confronting similar challenges. As part of the community, you may also take part in national conversations and events on CancerConnect. To do so, you will not need to register again.

Wed, Jan 24 2:04pm · @beakmom · Treatment update

Today is radiation treatment number 8 for squamous cell carcinoma of the left tonsil. On Wednesday, I have cetuximab infusion number 3. Side effects include: Red, itchy rash around my mouth and nose; can't eat anything with vinegar or peppers (it burns); water tastes terrible; fatigue (of course). I can [...]

Posted by @beakmom, Wed, Jan 24 9:38am

My daughter asked yesterday if I wanted a cake or pie, then what I wanted for dinner. So I assumed she was coming over after work tonight. She then informed me that they would “all” be here at 6PM. Assuming “all” means my kids and +1’s. She did tell me […]

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Fri, Jan 26 4:47pm · @drummerboy · The Dental Side Effects of Head and Neck Cancer - Have You Been Warned

When I was diagnosed for the third time, with head and neck (right tonsil) I was not given any warning, advice, counseling at all about the side effects to come with my teeth. After 25 radiation treatments to the neck, my teeth proceeded to fall out over the course of [...]

Posted by @pjcnley5, Fri, Jan 26 3:03pm

We all have opportunities to share help each other. Maybe you are right in stating that the most we will be able to do is educate other folks to be more diligent in their inquiries before actual treatment begins. When friends or relatives speak to me now I tell them […]

Liked by esther2k5, MarinS

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Wed, Mar 7 3:44am · @mommyjd · Post treatment moral support

Stage 4 throat cancer survivor.,. 2 years post treatment. Here for morale support! [...]

Posted by @mommyjd, Wed, Jan 10 1:33pm

The feeding tube was a lifesaver for me..although I hated it. I also found peppermint oil to help with any nausea…I just sniffed it out of the bottle. […]

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Sun, Feb 25 8:31am · @surfertam · Paratoid gland squamous cell carcinoma

Has anyone here ever dealt with paratoid gland squamous cell cancer? Post surgical paratoidectomy followed by radiation and still searching for answers to cure. Any positive results with other options tried? Thanks@ [...]

Posted by @maltman, Tue, Feb 20 3:37pm

Did the doctors do genomic testing on the cancer to see if might respond to some of newer precison immunotherpay treatments?
what stage is the cancer? […]

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Fri, Jan 5 6:02pm · @willieb · hands free voice

Hello everyone! First of all I'd like to say thanks for all the helpful tips I've gotten from this community so far. I had my total laryngectomy in May of 2017 and so far things are progressing well. At this point I have the tep voice prosthesis and have recently [...]

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Tue, Jan 2 2:04pm · @luisa · From Dana-Farber: Salivary Gland Cancer: What are the Symptoms?

From Dana-Farber: Salivary Gland Cancer: What are the Symptoms? Salivary gland cancer, a type of head and neck cancer, is a rare disease in which cancer cells form in the tissues of the salivary glands. Read more at . [...]

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Fri, May 11 9:04am · @leoff · Cancer of the tonsil

My husband was treated for cancer of tge tonsil caused by HPV . He underwent 40 radiations and 2 chemo treatments almost 2 years ago. Now his latest scan shows a 3 cm tumor on his kidney and new lesions on his liver. Is this common for a metastasis of [...]

Posted by @carolcowan, Tue, Jan 2 2:46pm

Leoff, I did see that they talked about the average time of diagnosis of metastasis from HPV cancer to distant sites being between 16.4 months and 24 months.
Carol […]

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Dec 31, 2017 · @beakmom · Newby to group, not to cancer

I have recently been diagnosed with squamous cell carcinoma. They found a tumor on my left tonsil spread to adjacent lymph nodes. Lymph nodes I know from. I have been fighting Non-Hodgkin's Lymphoma since 1995. When we found the enlarged nodes in my left neck, we expected to find isolated [...]

Posted by @beakmom, Dec 31, 2017

Thank you. One question: Not to sound ignorant, but what does NED stand for? […]

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Nov 26, 2017 · @sdcsurvivor · Salivary Duct Carcinoma

Anyone here with salivary duct carcinoma? I know it's a long shot. [...]

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Nov 20, 2017 · @annab · nerves each side of tongue destroyed by radiation

my hubby is 1 year and a half since radiation... nerves gone each side of tongue.. so tongue does not work... unable to eat drink or even swallow saliva... he drools all the time... it's so sad...his tongue doesn't work and the nerves will never regenerate... so physical therapy will [...]

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Nov 14, 2017 · @shaun · Maxillary and mandibular cancer

I had maxillectomy and paletectomy both sides Jan 18 2016. They also found left mandible cancer at the time of surgery. Treated with chemo and radiation. Now I have Stage 4 mandibular cancer and require major surgery to remove my mandible Dec 1 at Loyola. Very confident in the surgeons! [...]

Posted by @shoshy, Nov 14, 2017

My husband actually just has endoscopic nasal surgery at Loyola. Dr. Chirag Patel was his surgeon,
we were very happy and we the found the staff at Loyola to be very pleasant. […]

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Nov 10, 2017 · @milroybum25 · Oral Cancer

I had surgery back on January 31 to remove a cancerous tumor from my jawbone. It was a 14 hour surgery to remove the tumor from the jawbone and reconstruct the jaw with skin and bone from my leg. I had over 35 lymph nodes removed, a tooth, and nerves. [...]

Posted by @spiritofsol, Nov 10, 2017

My wife had the same surgery on August 11th. They removed 32 lymph nodes and found squamous cell carcinoma in 5 of them. They also found another tumor on her voice box. She also lost teeth. She had to stop radiation for several weeks due to becoming extremely ill (she […]

Liked by Milroybum25

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Oct 23, 2017 · @gdp1943wls · CAR T cell therapy

Is CAR T cell therapy been tried in head and neck cancers? [...]

Posted by @carolcowan, Oct 22, 2017
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Oct 11, 2017 · @dmc1025 · Acinic cell carcinoma to parotid gland in 1988

Hello, I am happy to stumble upon this site. Long ago, at the age of 30 in 1988 I was diagnosed with a tumor wrapped around the tail of the parotid gland. Surgery concluded it was acinic cell carcinoma and was followed by many weeks of radiation. While I am [...]

Posted by @carolcowan, Oct 11, 2017

Places like Walmart sell ice shavers. They’re inexpensive and the ice is like snow. I was taking medication that made my mouth dry and made a bowl of shaved ice with a little water mixed in so it would feel more wet. I’d eat it with a spoon while […]

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Oct 6, 2017 · @tom1947 · Exercise

As fall gets here I will not be able to walk as much. What have you found to be the best exercise programs for winter. Tom [...]

Posted by @erthwlkr, Oct 5, 2017

Hi Tom – if the outdoors is too cold, buying a piece of equipment, like a stationery bike or treadmill is a choice. But another option is to join a gym. Not sure where you’re located, but Planet Fitness costs about $10 per month. You have great access to treadmills, […]

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