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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.

Thu, Feb 8 1:18am · @roseyfair · Stage 4 cancer of the submaxiallary gland

I have salivary gland cancer stage 4. It has metastized to both lungs. I had my submaxiallary gland removed, a neck dissection and two more surgeries. I had 33 radiation treatments. My radiation doctor told me there was a 96 percent chances I would be cured. About 6 months later [...]

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Thu, Mar 8 3:28pm · @beakmom · How long after treatment ends will my taste buds be screwed up?

I find myself becoming very depressed every time I try to eat, and the food tastes like bitter sawdust. Then I CAN'T eat. I am a "live to eat" rather than a "eat to live" personality. They are placing a feeding tube today, so I won't lose weight. But I'm [...]

Posted by @beakmom, Thu, Mar 8 3:28pm

Thank you. It's not as good as I would have hoped, but everyone is different, I suppose, so maybe it will faster for me? Or maybe not. We live with what we're given. […]

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Tue, Feb 6 3:15pm · @wojahns · Chemo for life?

My wife is in her sixth year fighting cancer that spread from the back of her throat to nearby lymph nodes to nearby behind her ear canal. The multiple tumors have been defeated one at a time with radiation, chemo, and multiple immunotherapies (many in trials). Now the cancer is [...]

Posted by @wojahns, Tue, Feb 6 3:15pm

The rind has been stable (no growth) for more than 6 months now (slowly shrinking). […]

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Wed, Jan 31 6:41am · @albert · Continuous Chemotherapy

Should a person have chemotherapy for 24 hours a day for a hole week as my partner did [...]

Posted by @albert, Wed, Jan 31 6:41am


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Fri, Jan 26 1:18pm · @dotti · Esophageal Lumen Restoration post radiation

My husband’s battle with SCC throat cancer started 1yr ago, when in 6wks he lost 30 lbs, had emergency hospital admission to secure PEG feeding tube and hemp port once his throat cancer was dx. We followed “standard routine treatment” of 7-wks daily radiation with a 1X weekly cisplatin IV [...]

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Tue, Jan 23 1:26pm · @bethcasbeer · Inability ti eat after throat surgery

Has anyone had throat surgery and been unable to swallow and eat afterwards? If so , was there any treatment for it? [...]

Posted by @bethcasbeer, Tue, Jan 23 1:26pm

Thank you for sharing your experiences. I am asking for a friend, and your replies are helpful. […]

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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 @carolcowan, Wed, Jan 24 2:04pm

Make sure no one is sick! Happy birthday!
Carol […]

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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 @esther2k5, Fri, Jan 26 4:47pm

I guess I did misconstrue your post, pjconley5–sorry about that. I’m just not a fan of DFCI or hospitals/MDs in general and pray to stay out of them. So far so good. Hope your jaw issues improve. […]

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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 @tom1947, Wed, Mar 7 3:44am

Good morning – Glad your still here. I'm stage 4 – three years post treatment. Everyday is truly a gift. I have definitely been blessed the last three years. So many things I would have missed if I had gone when they predicted I would. I'm off to the gym […]

Liked by esther2k5, MarinS

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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 @charles, Sun, Feb 25 8:31am

larotrectinib (LOXO-101) data just released and this new precision cancer medicine looks to benefit some with salivary gland cancers: Larotrectinib Demonstrates 76 Percent Response Rate in TRK Fusion Cancers Including Those of the Salivary Gland […]

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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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Tue, Jan 2 2:46pm · @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 @carolcowan, Dec 31, 2017

NED is No Evidence of Disease. It’s the new catch-all that can replace cancer-free, remission, or “cured” (which is really a term that shouldn’t be used for cancer in general). It’s the goal with cancer treatment.
Carol […]

Liked by beakmom

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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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