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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.

Nov 20, 2017 · @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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Nov 14, 2017 · @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 @shoshy, Nov 14, 2017

My husband actually just has endoscopic nasal surgery at Loyola. Dr. Chirag Patel was his surgeon,
we were very happy and we the found the staff at Loyola to be very pleasant. […]

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Nov 10, 2017 · @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 @spiritofsol, Nov 10, 2017

My wife had the same surgery on August 11th. They removed 32 lymph nodes and found squamous cell carcinoma in 5 of them. They also found another tumor on her voice box. She also lost teeth. She had to stop radiation for several weeks due to becoming extremely ill (she […]

Liked by Milroybum25

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Oct 23, 2017 · @gdp1943wls · CAR T cell therapy

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

Posted by @carolcowan, Oct 22, 2017
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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, Oct 11, 2017

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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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, Oct 5, 2017

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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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, Oct 6, 2017

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

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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 there any employment support organization for cancer [...]

Posted by @mdkin, Nov 9, 2017

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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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 [...]

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Sep 15, 2017 · @gdp1943wls · gene therapy treatments

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

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Sun, Feb 11 5:50pm · @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, Oct 21, 2017

Are there any in (Chicago) IL? […]

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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, Oct 7, 2017

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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1 day ago · @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 @dondevore, 1 day ago

Not really, because the radition builds from the initial time. Like it multiplied in its effects and it took me maybe 3 additional months after my treatments ended. I had 35 radition and 7 chemotherapy. I was on the tube for 18 months before progressing to semi- solid food. But […]

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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, Jul 24, 2017

Hi @oanhbui, sorry that your niece is having to deal with this. Where is the tumor exactly?
This might help: There is information on this page by tumor location. […]

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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, Aug 1, 2017

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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