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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.

Sun, Nov 26 3:40pm · @sdcsurvivor · Salivary Duct Carcinoma

Anyone here with salivary duct carcinoma? I know it's a long shot. [...]

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Mon, Nov 20 6:45pm · @annab · nerves each side of tongue destroyed by radiation

my hubby is 1 year and a half since radiation... nerves gone each side of tongue.. so tongue does not work... unable to eat drink or even swallow saliva... he drools all the time... it's so sad...his tongue doesn't work and the nerves will never regenerate... so physical therapy will [...]

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Tue, Nov 14 5:07pm · @shaun · Maxillary and mandibular cancer

I had maxillectomy and paletectomy both sides Jan 18 2016. They also found left mandible cancer at the time of surgery. Treated with chemo and radiation. Now I have Stage 4 mandibular cancer and require major surgery to remove my mandible Dec 1 at Loyola. Very confident in the surgeons! [...]

Posted by @shaun, Tue, Nov 14 5:07pm

I have Dr. Thorpe and Dr. Pittman. They are both excellent surgeons. They do a lot of head and neck cancer patients. […]

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Fri, Nov 10 3:27pm · @milroybum25 · Oral Cancer

I had surgery back on January 31 to remove a cancerous tumor from my jawbone. It was a 14 hour surgery to remove the tumor from the jawbone and reconstruct the jaw with skin and bone from my leg. I had over 35 lymph nodes removed, a tooth, and nerves. [...]

Posted by @stevet57, Fri, Nov 10 3:27pm

Had tonsil cancer stage 4, 8 years ago. Went thru all the same treatments, chemo, radiation and I am still here but it’s a different me. I have no complaints about the extra years God has blessed me with extra years to live life. So you see it can be […]

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Mon, Oct 23 12:20am · @gdp1943wls · CAR T cell therapy

Is CAR T cell therapy been tried in head and neck cancers? [...]

Posted by @gdp1943wls, Mon, Oct 23 12:20am

Thanks very much! Howard! […]

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Wed, Oct 11 4:40am · @dmc1025 · Acinic cell carcinoma to parotid gland in 1988

Hello, I am happy to stumble upon this site. Long ago, at the age of 30 in 1988 I was diagnosed with a tumor wrapped around the tail of the parotid gland. Surgery concluded it was acinic cell carcinoma and was followed by many weeks of radiation. While I am [...]

Posted by @dmc1025, Wed, Oct 11 4:40am

Carol: OMG thank you for your response. I didn’t realize ice shavers were available. I’m off to Walmart today to get one for sure. My crushed ice obsession has become out of control and I know any minute one of my many teeth, crowns or fillings are going to retaliate. […]

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Fri, Oct 6 7:47am · @tom1947 · Exercise

As fall gets here I will not be able to walk as much. What have you found to be the best exercise programs for winter. Tom [...]

Posted by @aliceko, Fri, Oct 6 7:47am

I go to the gym – LA fitness. Runs me $30 a month. Very close to my house. I have a treadmill at home that my husband bought for himself. It never gets used by either of us. Just takes up space […]

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Sat, Oct 7 3:06pm · @willieb · Thick saliva

Hello! How everyone is having a GREAT Sunday. Recently I've been experiencing thick saliva in the back of my throat. It seems to be interfering with my voice prosthesis. Does anybody have any tricks to thin out this saliva? Any help would be greatly appreciated. Thank you in advance [...]

Posted by @tom1947, Sat, Oct 7 3:06pm

I gargle with diet sprite or diet ginger ale. 

Tom Heinmiller  […]

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Thu, Nov 9 8:44pm · @spiritofsol · Advice - Employment

I am a caregiver to my wife who is being treated for Stage IV squamous cell carcinoma of the retromolar trigone. We moved to Columbus in April, she had major surgery in August and I just got laid off. We are new there any employment support organization for cancer [...]

Posted by @spiritofsol, Thu, Nov 9 8:44pm

Thank you. […]

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Thu, Sep 14 8:41pm · @willieb · Shoulder pain

First of all thanks to everyone who gave me some advice on how to increase my appetite. I have tried several of those things and am eating more daily. But since my larynectomy I've also been experiencing a lot of pain in my shoulders. My doctor has prescribed a low-dose [...]

Posted by @esther2k5, Thu, Sep 14 8:41pm

Try adding ginger to your diet (e.g. in various beverages like smoothies and coffee and ginger capsules–they fight inflammation & pain. […]

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Fri, Sep 15 6:41am · @gdp1943wls · gene therapy treatments

are there any clinical trials for gene therapy treatments for h @ n cancers? [...]

Posted by @charles, Fri, Sep 15 6:41am

Not sure exactly what you are asking; Genomic tests are used to identify the specific genes in a cancer that are abnormal or are not working properly. In essence, this is like identifying the genetic signature or fingerprint of a particular cancer. Genomic testing is different from genetic testing. Genetic […]

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Sat, Oct 21 9:49pm · @gdp1943wls · immune checkpoint inhibitors as inital treatment

do immune checkpoint inhibitors work for head and neck cancers and if so, where in the south can it be done? [...]

Posted by @shoshy, Sat, Oct 21 9:49pm

Are there any in (Chicago) IL? […]

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Sat, Oct 7 3:00pm · @willieb · Increasing my appetite

Since my larynectomy I've lost my sense of taste and smell and find it hard to find things I like to eat. Anything anyone has tried to increase your appetite? [...]

Posted by @tom1947, Sat, Oct 7 3:00pm

I'm gaining weight and have had to start watching it. I can't do meets or bread but I can put just about anything in my nutribullet. Today for the game it's pizza with little distilled water. 

Tom Heinmiller  […]

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Mon, Nov 13 12:18pm · @robinlea · Prolonged reaction to radiation treatments

I had 8 weeks of Herbitux chemo and 7 weeks of radiation treatments for my tonsil cancer. Treatments ended 11 weeks ago (May 17th). My throat is very swollen and that along with the pain in my mouth, makes eating very difficult. My chemo and radiation doctors expected me to [...]

Posted by @metalneck, Mon, Nov 13 12:18pm

My husband had stage 4 tonsil cancer in 2014. After 7 wks of radiation and 2 chemo rounds, he had the radical neck dissection as he had lymph nodes showing cancer. After 3 1/2 years he’s having some side effects, including dry mouth, swallowing difficulty with most foods unless they […]

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Sat, Aug 12 5:28pm · @oanhbui · Educational material for teen about head and neck cancer

Hello all I am interested in knowing if any of you have have any simple educational materials to have teen understand what heand and neck cancer is, how removal of the tumor can change the facial formality, how to help other body part that were taken out to cover the [...]

Posted by @erthwlkr, Sat, Aug 12 5:28pm

Hi – One of the best educational books I’ve read about cancer itself and how it works is “Anticancer: A New Way of Life” by David Servan-Schreiber. This can help provide a road map to how cancer grows and how it can be stopped. You can also try the Oral […]

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