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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.

Oct 11, 2017 · @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 carolcowan, Wed, Oct 11, 2017 12:22am

dmc1025,
Places like Walmart sell ice shavers. They're inexpensive and the ice is like snow. I was taking medication that made my mouth dry and made a bowl of shaved ice with a little water mixed in so it would feel more wet. I'd eat it with a spoon while

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Posted by dmc1025, Wed, Oct 11, 2017 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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Oct 6, 2017 · @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 erthwlkr, Thu, Oct 5, 2017 8:54pm

Hi Tom - if the outdoors is too cold, buying a piece of equipment, like a stationery bike or treadmill is a choice. But another option is to join a gym. Not sure where you're located, but Planet Fitness costs about $10 per month. You have great access to treadmills,

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Posted by aliceko, Fri, Oct 6, 2017 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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Oct 7, 2017 · @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 possum, Fri, Oct 6, 2017 4:48pm

You might try over the counter Mucinex and see if it works.

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Posted by tom1947, Sat, Oct 7, 2017 3:06pm

I gargle with diet sprite or diet ginger ale. 

Tom Heinmiller 

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Nov 9, 2017 · @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 here...is there any employment support organization for cancer [...]

Posted by mdkin, Thu, Nov 9, 2017 9:24pm

I'm new to this group . I was diagnosed with squamous cell carcinoma of the right tonsil at stage 4 a little over a year ago . My husband and I were in the same position as you are. I needed him and he couldn't be in two places at

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Posted by spiritofsol, Thu, Nov 9, 2017 8:44pm

Thank you.

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Sep 14, 2017 · @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, 2017 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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Sep 15, 2017 · @gdp1943wls · gene therapy treatments

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

Posted by charles, Fri, Sep 15, 2017 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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Mon, Sep 24 6:32am · @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 charles, Mon, Sep 24, 2018 6:31am

Immune checkpoint inhibitors are a major advance for the treatment of head and neck cancer. Keytruda was originally approved for recurrent cancer treatment: https://mavendoctors.io/cancerconnect/head-neck-cancer/keytruda-approved-for-advanced-head-and-neck-cancer-y2EdIGqND0iR0mMoG0cykw/ Although not yet FDA approved for initial treatment data is not available showing its benefit. With published data many insurers will begin coverage.

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Posted by charles, Mon, Sep 24, 2018 6:32am

Here is the recently published data on Keyturda as initial treatment for head and neck cancers; https://mavendoctors.io/cancerconnect/head-neck-cancer/study-shows-first-line-keytruda-treatment-effective-for-head-neck-cancer-A7uF7bH_90O_o_zVCOEIbw/

C

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Oct 7, 2017 · @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 jscprop, Sat, Oct 7, 2017 8:44am

I have been without my feeding tube for 6 months now and am able to eat most foods now even though many still taste like cardboard. You get used to it and I simply eat from memory of how it used to taste. I still have trouble with most meats

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Posted by tom1947, Sat, Oct 7, 2017 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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Sun, Sep 16 6:58pm · @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 lindal, Sat, Sep 15, 2018 1:56pm

Have totally different type of cancer, brain, BUT. I am learning that even good doctors don't seem to connect with some of the log term effects and it has be a long time for me and still have some side effects. So don't feel like you are alone with that.

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Posted by lindal, Sun, Sep 16, 2018 6:58pm

Geesh, frequently get a word a little off.!! Oh well.

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Aug 12, 2017 · @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 megm, Mon, Jul 24, 2017 12:44pm

Hi @oanhbui, sorry that your niece is having to deal with this. Where is the tumor exactly?
This might help: http://news.cancerconnect.com/types-of-cancer/head-and-neck-cancers/ There is information on this page by tumor location.

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Posted by erthwlkr, Sat, Aug 12, 2017 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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Aug 1, 2017 · @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 karen95, Tue, Aug 1, 2017 10:05am

My husband had part of the back of his tongue removed because of cancer. He was able to have it done by robot instead of having to break the jaw and reconstruct it so there was less trauma and recovery. If there is radiation, just make sure he gets enough

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Posted by tom1947, Tue, Aug 1, 2017 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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Jul 13, 2017 · @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 carolcowan, Thu, Jul 13, 2017 1:37pm

Oanh,
Check the Patient Navigator Program out. They sound like they'll provide one not affiliated with the hospital. Also, your health insurance company should be providing you with a case manager. When the care of a patient, especially a cancer patient, becomes involved a case manager is used by the

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Posted by tom1947, Thu, Jul 13, 2017 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

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Jun 28, 2017 · @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 charles, Tue, Jun 27, 2017 9:53am

You can stay current with advances here; http://news.cancerconnect.com/types-of-cancer/head-and-neck-cancers/
and with newer precision medicines here; www.oncoprecision.org
C

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Posted by jenkojx, Wed, Jun 28, 2017 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

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Oct 2, 2017 · @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 marins, Mon, Oct 2, 2017 5:58pm

Thanks so much!

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Posted by esther2k5, Mon, Oct 2, 2017 6:07pm

You're very welcome. Happy to help, Marin!

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Jul 31, 2017 · @wojahns · Does Keytruda after Opdivo work?

Does Keytruda work if Opdivo stopped working or are they too similar such that it would not be the best option? [...]

Posted by wojahns, Mon, May 15, 2017 1:07pm

A similar question is : Does Opdivo plus Yervoy work after Opdivo stopped working earlier? Also does Opdivo work later in another attempt if it stopped working earlier?

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Posted by ponderit, Wed, May 31, 2017 1:03pm

Based on PD-l1 and PD1 if they are high I would definitely think the Keyudra would work, Not to sure about the other way around though,

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