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Meet others living with Head & Neck Cancer: Introduce yourself

Posted by Colleen Young, Connect Director @colleenyoung, Nov 13, 2017

Welcome to the Head and Neck Cancer group.
This is a welcoming, safe place where you can meet other people who are living with head and neck cancer. Let’s learn from each other and share experiences from diagnosis through treatment and coping with symptoms and recovery challenges.

As you know, head and neck cancer is the general term for a broad group of cancers that begin in the head and neck region. This include oropharyngeal cancer, hypopharyngeal cancer, laryngeal cancer, lip and oral cavity cancer, nasopharyngeal cancer, paranasal sinus and nasal cavity cancer, salivary gland cancer, squamous cell neck cancer or ameloblastoma.

Let’s get to know one another. Why not start by introducing yourself? What type of cancer have you been diagnosed with?

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

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simplygrand | @simplygrand | 4 hours ago
In reply to @sepdvm "Hello @simplygrand and welcome to H&N Connect. To address your hearing situation, My SCC was in..." + (show)
Profile picture for Sue, Volunteer Mentor @sepdvm

Hello @simplygrand and welcome to H&N Connect. To address your hearing situation, My SCC was in my ear canal so initial surgery removed the ear canal and left me with unilateral hearing. My hero medical oncologist at Mayo addressed this saying cisplatin and carboplatin were both off the table due to limited hearing. She recommended a targeted therapy along with radiation which was Cetuximab (Erbitux). Now my cancer is considered skin origin, not mucous membrane like oral cancers, so there may be different options for these different types. In any case, 14 years later and there has been no recurrence at the initial site, I was fitted with a bone anchored hearing aid at Mayo and now hear from both sides again, but also have metastatic disease which has been controlled with both surgery and immunotherapy. My husband was also treated at Mayo for bladder cancer and due to his hearing loss he was given carboplatin instead of cisplatin. That was 5 years ago and his hearing was not damaged much by that treatment. Another family member just completed that same cisplatin/radiation regimen and has had no hearing loss up to this point but he is only 44 and 4 months out from treatment. Definitely have this discussion with your medical team so you can have the least risk possible to your hearing without sacrificing efficacy against the cancer.

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@sepdvm
Thanks so much for your thoughtfulness. Some decisions were made since I posted. Plan is for 7 weeks of radiation with 40mg of Cisplatin / week. This will limit Cisplatin to less than 300mg total which seems to be an accepted protocol at the moment. Additionally, I had a baseline audio test and the Dr. agreed to a retest after the 4th infusion to see if there is reason to stop or throttle it back at this halfway point. So that's the plan. Starts next Monday.
Again, thank you.

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