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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.

Apr 17, 2018 · @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 smunshi, Tue, Apr 17, 2018 1:11pm

I am practising neck and shoulder exercises regularly as shown by my physical therapist without much effect, though Ihave not gave up exercises. Also I am massaging neck area regularly without any effect.

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Posted by esther2k5, Tue, Apr 17, 2018 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

[...]

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Feb 8, 2018 · @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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Jul 30, 2018 · @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, Mon, Jul 30, 2018 12:42pm

I now pretty much have my taste back, although it has changed. I can no longer eat tomato-based sauces, and still need for my food to be very moist in order to swallow it. I also can't eat anything spicy. It's like the tissues in my mouth are really thin

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Posted by marins, Mon, Jul 30, 2018 2:41pm

This is great news, beakmom! Getting rid of that darn PEG tube and learning to enjoy real food again is a real milestone! If you're like me, it will take some time before you like some of the things that used to be your "go-to's" but it should eventually happen.

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Feb 6, 2018 · @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 carolcowan, Tue, Feb 6, 2018 9:06am

Kevin,
I agree with Marin. A second opinion before they say they're stopping treatment because it's not helping enough is a good idea. You can try telling your current doctor that and see if anything different could be given by him. Definitely check on clinical trials, too.
Carol

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Posted by wojahns, Tue, Feb 6, 2018 3:15pm

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

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Jan 31, 2018 · @albert · Continuous Chemotherapy

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

Posted by carolcowan, Mon, Jan 29, 2018 3:43pm

Alan,
Chemotherapy ids given in many forms and on many schedules. There's nothing to go on to answer your question like where the cancer is, what stage, and what his treatment plan includes. In general, a person can get chemo 24 hrs a day, seven days a week. That can

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Posted by albert, Wed, Jan 31, 2018 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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Jan 26, 2018 · @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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Jan 23, 2018 · @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 dotti, Tue, Jan 23, 2018 8:50am

My husband lost his ability to swallow prior to actual SCC throat cancer diagnosis Feb 2017; PEG feeding tube inserted then and he hasn’t swallowed food or liquid since. His tumor was 3.6cm at base of throat preventing food or liquid from passing. He had 7wks of daily radiation with

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Posted by bethcasbeer, Tue, Jan 23, 2018 1:26pm

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

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Jan 24, 2018 · @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, 2018 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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Posted by carolcowan, Wed, Jan 24, 2018 2:04pm

Make sure no one is sick! Happy birthday!
Carol

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Jan 26, 2018 · @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, 2018 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

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Posted by esther2k5, Fri, Jan 26, 2018 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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Mar 7, 2018 · @mommyjd · Post treatment moral support

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

Posted by mommyjd, Wed, Jan 10, 2018 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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Posted by tom1947, Wed, Mar 7, 2018 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

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Feb 25, 2018 · @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, 2018 3:37pm

Did the doctors do genomic testing on the cancer to see if might respond to some of newer precison immunotherpay treatments? http://news.cancerconnect.com/types-of-cancer/head-and-neck-cancers/salivary-gland-cancer/early-stage-iii-salivary-gland-cancer/
what stage is the cancer?

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Posted by charles, Sun, Feb 25, 2018 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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Jan 5, 2018 · @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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Jan 2, 2018 · @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 www.dana-farber.org/salivary-gland-cancer/ . [...]

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Sep 24, 2018 · @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 rosetta, Fri, May 11, 2018 9:04am

Hi Carol, my husband completed 8 Chemo treatments (Cisplatin) and 7 weeks of radiation on March 6, 2017. He still has a white coating in his mouth at the tumor site. Doctors doing a PET SCAN May 22, 2018. Said that it does not look like
Thrush or mucosis. Might

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Posted by charles, Mon, Sep 24, 2018 6:09am

@leoff What have you learned-is the recurrence cancer of the tonsil or something else?
C

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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, Sun, Dec 31, 2017 2:56pm

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

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Posted by carolcowan, Sun, Dec 31, 2017 8:35pm

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

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