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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.

Thu, Apr 5 11:01am · @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 @mommyjd, Wed, Apr 4 4:54pm

I hate to inform you of this, but side effects of radiation can continue to develop for up to five years. I am now almost two years post treatment, still have a sore throat, can’t eat anything spicy because it burns my mouth, I have lymph edema, and new side […]

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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 [...]

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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 @megm, Jul 17, 2017

Hi @oanhbui, good for you for getting as much information as possible so that you can provide support for your sister and brother-in-law. The surgical team is the best resource to help understand recovery and post-surgery support that will be needed. Has your sister accessed social worker support where her […]

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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 @oanhbui, Jul 13, 2017

Thank you Carol.
i did check with Emory and meet with the social worker but seemed that we might be to access to more once he was referred to oncology. Currently he is considered as a patient at ENT department and not much they can do anything for us until […]

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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, Jun 27, 2017

A difficult question; there is new data in lung cancer that shows combining Keytruda with chemo is better than Keytruda alone. Keytruda alone is unlikely to cure the cancer so if you are otherwise healthy it may make the most sense to consider the combination. if side effects become very […]

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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 @esther2k5, Oct 2, 2017

It comes in capsule form–500 mg each cap. The directions say to take it on an empty stomach 2-3x daily with water.
Though I don’t have HPV I’ve heard it shortens duration of cold sores. Anyway, it’s definitely worth trying.
Available at any health food store though Swanson Vitamins (swansonvitamins.com) […]

Liked by MarinS

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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 @charles, May 13, 2017

Great question; i would think it would be unlikely for one to have significant benefit after the other but i have not heard of experience from others or seen anything published yet. Does anyone have any experience here?
C […]

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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 @ozark, May 13, 2017

Hi Roy,
We are in US, a little town in Pennsylvania and my husband is being treated at Roswell Park Cancer Institute in Buffalo, N.Y. He has stage 3 squamous cell cancer, believed to be isolated in larynx. He previously had cancer of tonsils (supposedly cured) two years ago, treated […]

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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, May 2, 2017

Thanks for the helpful info. […]

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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. [...]

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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 @chrisfrommichigan, Apr 26, 2017

I believe a speech therapist should be seeing your husband. He/she will help with chin tucks and maybe recommend consistency of fluids etc. Very helpful. One visit may be all you need. Also get second opinion. Maybe its time for hospice…they are wonderful! […]

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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 [...]

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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 @charles, Mar 29, 2017

Hard to say-both highly targeted. It is of course important to be seen at a major cancer center for this therapy and understand from those doctors how your therapy choice might limit future options. This might be helpful http://news.cancerconnect.com/understanding-proton-therapy/

C […]

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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 [...]

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