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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.

18 hours ago · @gdp1943wls · CAR T cell therapy

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

Posted by @gdp1943wls, 18 hours ago

Has […]

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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, Oct 5 8:26am · @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, Oct 5 8:26am

Good morning and thanks! I have been throwing out some bait and I have had a few nibbles but nothing certain. I am also getting some networking assistance from a local church and have a meeting with a sourcing group next week. I am trying every angle I can think […]

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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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Thu, Oct 12 3:02pm · @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 @gdp1943wls, Thu, Oct 12 3:02pm

Thanks […]

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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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Wed, Aug 30 11:12am · @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 @carolcowan, Wed, Aug 30 11:12am

Bottom line – 3500 calories equal a pound of body weight. So much goes into that to make it difficult to figure out what you need to take in. Activity uses calories, so does treatment in most cases. Diarrhea equals calorie loss and without sufficient calorie intake, it leads […]

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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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Tue, Aug 1 10:32am · @oanhbui · resources for post surgery care

I am hoping to get more ideas of how to best prepare for my brother-in-law and my sister for post surgery care. He will have to go through a 15 hour surgery to remove the tumor and to restructure his jaw. Wonder if anyone here has experience with this kind [...]

Posted by @tom1947, Tue, Aug 1 10:32am

Went through a very similar experience – changed from ensure to Enu for calorie count. Now mix my own in my nutri bullet. gety about 900 calories per shake plus vitamin and mineral supplemental. Worked with Hospital dietitian to create the best mix. […]

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Thu, Jul 13 2:47pm · @oanhbui · looking for support for my sister's family

Hello there, My name is Oanh Bui and I am writing to ask if you are aware of any resources to support my brother-in-law who just got the diagnosis of squamus cell carcinoma cancer stage 4A. He lives in GA and will receive a surgery to remove tumor on 7/21, [...]

Posted by @tom1947, Thu, Jul 13 2:47pm

Check out cancer support centers. I use the one in Columbus Ohio 3x a week. They provide everything you asked about and it's all free. They are the largest provider of those services in the world. Tom […]

Liked by Barbie

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Wed, Jun 28 7:22am · @tomjkt · Combining chemo & immuno in the treatment of metastatic head&neck canc

Have recent been diagnosed with stage 4 metastatic tonsil cancer that has spread bilaterally to the lymph nodes. A pet scan revealed a lesion on my sternum, so radiation was ruled out. I have had consultations with two medical oncologists, both of whom agree that immunotherapy, in particular Keytruda, may [...]

Posted by @jenkojx, Wed, Jun 28 7:22am

I may be able to help here. In January 2016 I also was diagnosed with stage 4 tonsil/throat squamous cell cancer. The cancer also metastasized to my liver and a lymph node at my pancreas. I was able to get into an immunization trial with Keytruda only. It took around […]

Liked by megm

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Mon, Oct 2 6:07pm · @ponderit · Vitamins or Supplements shown to Kill or Weak HPV or Cancer Cells

As the subject says I am looking for some supplements and vitamins where there have been case studies AHCC mushroom powder mix 1.5-3 grams you can get 750 mg per capsule so you take either 2 or 4. , Beta Glucan at least 1000mg and broccoli sprouts 1000-2000 mg. I [...]

Posted by @esther2k5, Mon, Oct 2 6:07pm

You’re very welcome. Happy to help, Marin! […]

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