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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.

May 12, 2017 · @charles · Keytruda

Anyone had experience with Keytruda to treat their cancer? [...]

Posted by wojahns, Fri, May 12, 2017 2:27pm

Opdivo shrunk mine 95% in a month but then it came back after that...

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Feb 15, 2017 · @cancerconnect · Research News

Research news: twice-daily radiation, when combined with chemotherapy, reduced deaths by 20% compared to the best standard treatment of once-daily radiotherapy with chemotherapy. It also reduced the risk of the cancer getting worse by 23%. Read more here: http://news.cancerconnect.com/twice-daily-radiation-therapy-reduces-mortality-head-neck-cancer/ [...]

Posted by carolcowan, Wed, Feb 15, 2017 8:55am

This is amazing!

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Jan 30, 2017 · @colinc8 · Stage 4A Toncil Cancer- Story of Hope!

Hi everyone.I'm almost one year out from treatment from stage 4a toncil cancer HPV pos.Thankfully I'm still clean or NED so far.I started out with T2N2BM0.Treatment was surgery removed left toncil, Removal of 20 lymph nodes left neck,then 66gy radiation over 33sessions+Carboplatin.Glad to answer any question I can or learn

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Posted by megm, Mon, Jan 30, 2017 10:26am

That is great news that you are NED. Thanks for sharing and appreciate you being here!

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Posted by colinc8, Mon, Jan 30, 2017 1:56pm

Thanks megm.I guess I seem to have gotten this far with a relatively reduced chemo regimin compared to what they to seem use in the US. Of course I may not be comparing apples with apples.Im hpv positive by the way.

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Feb 16, 2017 · @suggi · Voice-sparing treatment: Options?

Is it true that laporascopy surgery is safer than radiation as far as saving the voice, swallowing, etc.?

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Posted by hope44, Wed, Jan 25, 2017 6:00pm

My laparoscopic surgery was done with robots, with minimal incisions. It helped me recover faster and I was able to start chemo only 3 weeks after colorectal surgery. I am not sure if its safer or not.

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Posted by megm, Thu, Feb 16, 2017 3:15pm

Hi @suggi, have you decided on treatment yet?

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Jan 24, 2017 · @timhall6627 · Mouth cancer- flap leaks

Hi my boyfriend has mouth cancer and when he drinks sugar drinks his flap on his face leaks does anyone have this problem. Thanks

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Posted by timhall6627, Sun, Jan 22, 2017 11:15am

Yes on his flap on his side of right side.

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Posted by charles, Tue, Jan 24, 2017 9:02pm

well that is certainly a pain; cannot his doctor suture the flap down?

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Mar 17, 2017 · @dmcfayden · On Hospice Care for Throat Cancer- What to Expect?

84 yr old mother diagnosed Sept 2016 with throat cancer. She does not want treatment and is on hospice care. I am concerned she will choke to death but Dr said it will most likely invade her cerotic artery first. Has anyone dealt with this type of cancer? would like

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Posted by dmcfayden, Fri, Mar 17, 2017 5:20pm

Just want to thank those who replied to my post. My mother passed late Sunday night. They finally started giving her morphine in the last week which helped calm her breathing. By the end it looked liked the tumor had pretty much closed off her throat. She wasn't able to

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Posted by carolcowan, Fri, Mar 17, 2017 6:43pm

Donna,
I'm glad your mother's death was peaceful, I know that was a big concern of yours. If your mother was designated as a hospice patient by Medicare, the AL received an amount of money per day from the time she started on the program. They then pay all of

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3 days ago · @kirasea · Neulasta - Any advice or tips?

Neulasta - Any advice or tips to relieve the symptoms from Neulasta injections?  (Claritin not helping). Debilitating fatigue & inflammation is worse than chemo side effects. [...]

Posted by charles, Mon, Jan 14, 2019 8:21am

Do peoples pain from the neulasta injection get better or worse with each injection? In other words is it the worst the first injection and then you develop some tolerance?

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Posted by kzinzer, 3 days ago

In my experience, my symptoms decreased with subsequent injections.

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Dec 28, 2016 · @ivolkweis · Experience with SINUS SQUAMOUS CELL CARCINOMA

Is anyone familiar with SINUS SQUAMOUS CELL CARCINOMA? TKS

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Posted by tess1012, Tue, Dec 27, 2016 1:13pm

Did the tumor shrink ?? And still not operable??

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Posted by ivolkweis, Wed, Dec 28, 2016 10:28am

No It didn't., actually, its growing slowly. He will go back to abdivo, the doctor want to do some more Kimo therapy, he doesn't, too much side effect. He had ITILIMUMAD, MGA 271, ABDIVO... you named. Thank you!

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Jan 1, 2017 · @wojahns · Anybody tried Yervoy with Opdivo?

Anybody tried Yervoy with Opdivo?? I'm considering it, but Yervoy has mean side-effect possibilities. I had no side effects from Opdivo for HNSSC. Thanks.

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Posted by megm, Tue, Dec 27, 2016 8:48am

Hi @wojahns, just checking in to see if you ended up do the combination of Yervoy and Opdivo?

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Posted by wojahns, Sun, Jan 1, 2017 9:12pm

Hi!
We delayed because currently capecetamine seems to be working with little ill effects other than tiredness which seems much better than risking the Opdivo/Yervoy combined potential side effects. Well keep you informed, thanks.
I am also approved for patient assistance if I have to use them but not a

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Oct 17, 2016 · @megm · Research News: Particular HPV Strain Linked to Improved Prognosis

In an analysis of survival data for patients with a particular type of head and neck cancer, researchers from the University of North Carolina Lineberger Comprehensive Cancer Center confirmed findings that a particular strain of HPV, a virus linked to a number of cancers, resulted in better overall survival for [...]

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Oct 14, 2016 · @guestmoderatordrkang · Ask the Expert: Question about stress and cancer recurrence

Question: Does excessive amounts of stress increase the change of my cancer returning? And is there a time frame after cancer occurrence that I no longer need be concerned about return of cancer? 3 yrs? 5 yrs? Response: This is a very interesting question! I think most physicians would [...]

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Oct 14, 2016 · @guestmoderatordrkang · Ask the Expert: Question about neck cramps after radiation

Question: From time to time, I have cramps from my radiation to the side of my neck. How would I go about treating these muscle contractions? Response: I would discuss this with your radiation oncologist. It is possible that physical therapy may be helpful in your case. Dr. [...]

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Mar 21, 2017 · @guestmoderatordrkang · Ask the Expert: Question about mouth side effects

Question: I am 2 1/2 years out from having stage III tongue cancer. I still have a very dry mouth, very sticky & gooey saliva. In addition, most of the time I feel like there's a film on my teeth, even right after I brush. Is there anything to help [...]

Posted by whitecobra, Tue, Mar 21, 2017 6:38pm

It depends on where the cancer is located
If the cancer is in the head and neck and radiation was used to treat it then the mouth has lost much of its defense system to fight off decay and gum disease
That is why so much time is spent teaching H&N patients

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Posted by carolcowan, Tue, Mar 21, 2017 8:04pm

Here's a link to a legal discussion about cases where Medicare paid for dental work that was required after cancer treatment, including radiation. These cases were in Maine.
In 1965, when Medicare was begun certain kinds of medical needs were not covered because they were deemed to be not

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Oct 30, 2016 · @guestmoderatordrkang · Ask the Expert: Question about dry mouth after radiation

Question: Does radiation treatment for vocal chord cancer cause or intensify dry mouth? Response: Yes. Radiation treatment, while required to treat cancer, also results in dry mouth, known as xerostomia, as a result of treatment. Dr. Kang is an Assistant Professor in the Department of Otolaryngology – Head [...]

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Feb 15, 2017 · @guestmoderatordrkang · Ask the Expert: Question about precision medicine

Question: Are there any advances in the treatment of neck cancers that use precision medicines? Response: Yes. Advances in the treatment of head and neck cancer are occurring by identifying novel targets, exploring mechanisms of tumor resistance to current therapy, and identifying effective combinations of treatments, whether chemotherapeutic or [...]

Posted by charles, Wed, Feb 15, 2017 11:12pm

What has your experience with the PD-1 drugs keytruda and opdivo been?

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