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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.

1 day ago · @beakmom · I found another lump-HPV strikes again

After finishing treatment for the squamous cell carcinoma on the left side of my neck, I have now discovered a new lump on the right side of my neck. Could this just be a reaction to the treatment? Or something? [...]

Posted by @marins, 1 day ago

I was about to say the same thing as Esther did about your sense of humor! Of course, NOT having that sense of humor would only make matters worse, so good for you! And, ya know, hijabs can be quite attractive! But seriously, please keep us posted… […]

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Tue, Apr 24 12:10pm · @wojahns · Long term open wound

After multiple radiation sessions following multiple chemo treatments my wife’s neck has an open wound under her ear. It is about the size of a half-dollar. She’s had it for about two years so far and it is getting marginally better under treatments with Santyl ointment and occasional Medihoney. The [...]

Posted by @wojahns, Tue, Apr 24 12:10pm

Thanks much for your feedback. […]

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Sun, Apr 22 10:02am · @garth · Throat cancer and a bag heart

Has anyone had bypass surgery thrtheoat trout muchradiation...breathing getting bad.. dumber by the day roblems....please pass anything ...5 weeks out of radiation.going thru much same...thanks [...]

Posted by @carolcowan, Sun, Apr 22 10:02am

Garth,
I'm Carol, a moderator here. I'm not sure what you're asking, except you sound like you're really having difficulty. If you can't breathe well, pain is increasing, or you're not getting enough fluids you need to call the doctor even though it's the weekend. You may have something obstructing […]

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Sat, Apr 21 10:37am · @ozark · Lymph node spread

My husband has a laryngectomy last August and two PET scans have just shown cancer in lymph nodes in his neck and thoracic area. Can anyone offer any insight about treatment? The one doctor said further tests would be need to see if thoracic nodes are even operable. Radiation is [...]

Posted by @carolcowan, Sat, Apr 21 10:37am

Ozark,
No, your husband is not being unreasonable at all. The people you're looking for who can give you EXACTLY the answers you're looking for are palliative care! You can be followed by them and the doctor you like who suggested them. I like him for suggesting them! They'll see […]

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Tue, Apr 17 12:35pm · @smunshi · Neck tightness

I am stage 4a larynx cancer survivor. I have completed 5 yrs. cancer free kourney on 16th April 2018. My neck is always suffering from acute tightness otherwise life is good. Ultimately I accepted this as my normal life. [...]

Posted by @esther2k5, Tue, Apr 17 12:35pm

I also have limited range of motion and minor tightness in my neck though do not do the exercises because it doesn't really bother me.
If I knew when I was diagnosed what I much later figured out, I would have pursued an alternative route and would have had my […]

Liked by Smunshi

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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

HER CANCER WAS IN HER MOUTH THEY TOOK QUITE A BIT OF HER TONUGE AWAY AND HER LIMTH GLAND SHE HAD OVER 50 STSPLES FROM BEHIND HER EAR TO HER CHIN […]

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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
http://news.cancerconnect.com/larotrectinib-demonstrates-76-percent-response-rate-trk-fusion-cancers-including-salivary-gland/ […]

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