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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 26, 2017 · @ozark · Larynx removal

Hi everyone. My husband is scheduled to have his larynx remove June 1. He would love to talk to someone who has gone through this operation to know what is in store for him. He is having a terrible time swallowing and has lost a lot of weight. Does anyone [...]

Posted by afrost3, Mon, May 15, 2017 11:42am

I am so sorry to hear that you and your husband are going through this. I will pray for him and you also. God be with you! He is!

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Posted by faith, Fri, May 26, 2017 1:48pm

You or your husband can reach out to the Cancer Coach program at the Cancer Wellness Center. They match a patient/caregiver with someone who is out of treatment - they also try to match cancer types so you can talk to someone who has been in your shoes. You can

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May 2, 2017 · @shoshy · I've seen where people are referring to head and neck cancers. what [...]

I've seen where people are referring to head and neck cancers. what are the specific types? My husband who just turned 52, was diagnosed with a sinonasal adenocarcinoma. We live in Chicago but he had it surgically removed at UPMC Presbytarian, unfortunately had to go back for another surgery a [...]

Posted by shoshy, Tue, May 2, 2017 1:00am

Thanks, feel good!

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Posted by bonnieh, Tue, May 2, 2017 10:01am

In 2011 I had radiation for esophageal cancer with great success. Early in 2015 I had part of my tongue removed due to tongue cancer. A few months later the cancer went to my jaw. Dec. 2015 I had a radical neck dissection to remove it. I was told there

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May 18, 2017 · @shyamal · Larynx cancer survivor- neck tightness

I am larynx cancer survivor. I have completed 4 yrs cancer free journey on 16th April 2017. My treatment was total laryngectomy followed by 30 rt. After surgery I'm suffering from neck tightness which gradually increases. Now it become very difficult to keep my head straight particularly in the evening. [...]

Posted by megm, Thu, Apr 27, 2017 3:57pm

Hi @shyamal, congratulations on your 4 years of being cancer free! I am one of the moderators here and have messaged the other members of the group to see if they can share their experience with you.

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Apr 26, 2017 · @ozark · I'm new here. Hope I can find my way back! My husband [...]

I'm new here. Hope I can find my way back! My husband was diagnosed at Roswell last week for cancer of the larynx. He had cancer of the tonsils before but this new cancer is considered a primary and not a spread from the previous. He has had radiation before [...]

Posted by ozark, Wed, Apr 26, 2017 8:06am

Thanks for the suggestion. We will definitely follow up!

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Posted by carolcowan, Wed, Apr 26, 2017 8:40am

Tom,
"Reirradiation" is radiation done in an area that had radiation before. It's a term they use most often in head and neck cancer. Basically, they use it as a strategy when there are no realistic options. They don't like doing radiation to the same areas of the body a

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May 16, 2017 · @luisa · What's New in Immunotherapy for Head and Neck Cancer?

"What's New in Immunotherapy for Head and Neck Cancer?" New Blog Post from Dana-Farber Cancer Institute The blog post begins, "For patients with advanced head and neck cancers, immune-based therapies have started to show results against these hard-to-treat tumors. Two immunotherapy drugs were approved in 2016 for use [...]

Posted by wojahns, Mon, May 15, 2017 1:14pm

My wife was recently offered Opdivo/Yervoy as a most promising option.

https://clinicaltrials.gov/ct2/show/NCT02741570

Plus here is another if you are HPV +.

https://clinicaltrials.gov/ct2/show/NCT02379520?term=NCT02379520&rank=1

These were given as the top two choices (better than current standard treatment) but with trial risk.

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Posted by charles, Tue, May 16, 2017 8:00am

A new resource to keep you up to date with all the advances in precision cancer medicines and immunotherapies; www.oncoprecision.org
C

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Apr 11, 2017 · @cancerconnect · Research News: Continuation of Immunotherapy

Some Head and Neck Cancer Patients Benefit From Continued Checkpoint Inhibitor Treatment After Tumor Growth, read more here: http://news.cancerconnect.com/head-neck-cancer-patients-benefit-continued-checkpoint-inhibitor-treatment-tumor-growth/ [...]

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Aug 4, 2017 · @shoshy · My husband had aendocarcinoma of the sinonasal area, it was already touching [...]

My husband had aendocarcinoma of the sinonasal area, it was already touching the lining of the brain. We don't know if we should do photon or proton therapy. Anybody?..... Also what if he needs to be radiated again in case of recurrence? [...]

Posted by maya214, Thu, Mar 30, 2017 3:30am

I am Marta .. Slowly I am 3 years, ITT got plenty of chemo Ovos half vezsnek castle was last radioterapi my head .. Midea stopped. I take most of the votes against sreroidot surgery reportedly are months away!

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Posted by shoshy, Fri, Aug 4, 2017 6:45pm

Hi, we ended up opting for proton radiation which he had for a little over 6 weeks. He tolerated it very well and only got slightly red the last week or so, he did loose a little bit of eyebrow closest to his eyes . So far so good but

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Mar 28, 2017 · @krug · Hello! I am Brazilian and in August of 2015 I was diagnosed [...]

Hello! I am Brazilian and in August of 2015 I was diagnosed with mucoepidermoid carcinoma of the minor salivary gland, located on the hard and soft palate. I did two surgeries and I'm following up. I was informed that this cancer is rare. I would like to know more about [...]

Posted by faith, Tue, Mar 28, 2017 1:07pm

Hi, I don't know if the translator changed the name of your cancer type but what I read said that is the most common type. Check out the oral cancer foundations' website: http://oralcancerfoundation.org/facts/rare/mucoepidermoid-carcinoma/
and this from American Cancer Society: https://www.cancer.org/cancer/salivary-gland-cancer/about/what-is-salivary-gland-cancer.html
Hope this is helpful.

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Feb 22, 2017 · @cancerconnect · Research News: Targeted Radiotherapy Reduces Dry Mouth

A troublesome side effect of radiation therapy treatment of cancers involving the head and neck is dry mouth. This occurs as a consequence of radiation damage to the salivary glands. According to a new study, changing the intensity of radiotherapy to protect the salivary glands could help treat a rare [...]

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Feb 16, 2017 · @cancerconnect · Advances in treatment of head and neck cancer in 2016

Check it out here: http://news.cancerconnect.com/2016-year-review-advances-management-head-neck-cancer/ [...]

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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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