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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.

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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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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