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.

karenj6738 | @karenj6738 | Feb 22, 2020

Squamous cell neck

Colleen Young, Connect Director | @colleenyoung | Feb 23, 2020

In reply to @karenj6738 "Squamous cell neck" + (show)

Hi @karenj6738, welcome to Mayo Clinic Connect. From you message, I believe you have squamous cell carcinoma in the neck region. Is that correct?

When were you diagnosed? Have you had any treatments yet?

Gaybinator | @gaybinator | Feb 23, 2020

In reply to @trauman "Coleen: Thanks for the response! All were in the head, neck and upper chest. All, including..." + (show)

My husband has SCC - spindle. Research shows that the SCC is frequently found in kidney transplant recipients about 2 years in. My husband received a living donor transplant in Oct 2012. The immunosuppression encourages the cancer growth.

It started as a quarter sized lesion on the top of his head summer 2014. His regular dermatologist sent him to a Mohs surgeon. The Mohs surgeries became an almost weekly affair. The Mohs surgeon arranged for us to come to Mayo. In the summer of 2015, the top of his scalp was resected and replaced with a flap at Mayo J'ville. The cancer kept coming. More surgeries and lots of radiation. Finally the surgeon at Mayo said "no more surgery. You have to have a systemic approach, otherwise we are chasing ghosts."

Our focus had been on saving the kidney, because we were told from the beginning that chemo might kill the kidney, and immunotherapy would definitely kill the kidney. Again, the transplant drugs were feeding the cancer, so it Aug 2016 he stopped taking them. We knew that only a very, very small percentage of people can retain the transplant without the drugs. It was only a matter of time. In Sept 2016, he began Erbitux and we came home. The Erbitux had limited sucess on the surface tumors, but the cancer metastasized to include tumors in the liver and diaphragm. His transplanted kidney began to fail in December 2016, and by March 2017 we trained for home hemo-dialysis. We did that for 1 1/2 yrs and then he went in-center because I just could not do it anymore.

In May 2017, a tumor board made up of local doctors met and they decided to try Keytruda which was approved for head and neck cancers. It was a miracle. The PET scans have only shown "pop up" cancers since then. The first of this year he was switched to Libtayo. Libtayo is basically the same as Keytruda, but specifically designed for squamous cell cancers. It was not available when he began the Keytruda.

My husband has not had any detectable side-effects from Keytruda or Libtayo, because they use his own immune system to fight the cancer. Dialysis, while scary in the beginning, is something which 400,000 people live with every day. The pain and general debilitation which my husband deals with are the result of all the surgeries and radiation which lead up to the systemic treatment he has now. I'm not a medical professional by any means, but I encourage you to pursue the systemic treatment if that is what your oncologist recommends.

Gaybinator | @gaybinator | Feb 23, 2020

In reply to @rossfee "Hi Maureen: Have you heard of hearing loss due to radiation treatment?" + (show)

Yes, we thought it was the radiation, but then found that it was EARWAX. Clean the ears first!

kkelly1023 | @kkelly1023 | Feb 23, 2020

In reply to @colleenyoung "Hi @karenj6738, welcome to Mayo Clinic Connect. From you message, I believe you have squamous cell..." + (show)

I had Adenoid Cystic carcinoma in the right salivary gland. I had the stage 4 tumor removed and completed 16 treatments of neutron beam radiation at the University of Washington in 2001. I will be 19 years cancer free on June 26th.

ezg | @ezg | Mar 3, 2020

The cancer has already eaten a whole in my tongue, why even try treatments

Colleen Young, Connect Director | @colleenyoung | Mar 3, 2020

In reply to @ezg "The cancer has already eaten a whole in my tongue, why even try treatments" + (show)

Hi @ezg and welcome to Mayo Clinic Connect. You'll notice that I moved your message to the Head & Neck Cancer group. I did this so you can meet others with tongue cancer like @canziea @alpaca @loli and @wayno1234

Ezg, you sound very discouraged. I get that. Can you tell the group a bit more about you? What is your diagnosis? What treatments have you had so far? Any reconstruction?

loli | @loli | Mar 3, 2020

Hi ezg,
You just cannot give up! Give us your story. We will try to help Try us!

Maureen, Alumna Mentor | @alpaca | Mar 3, 2020

In reply to @ezg "The cancer has already eaten a whole in my tongue, why even try treatments" + (show)

Sorry to hear this @ezg. There is good treatment for tongue cancers. I have a reconstructed tongue made from tissue in my forearm and I'm okay. Hope you can tell us more.

joemae1 | @joemae1 | Jun 21, 2020

Hello. I assume this message is being read by the Comunity director or Patient Mentors. I have just been told I have squamous cell carcinoma and have "a large tumor at the base of the tong which is deep and close to the voice box" which one surgen said he did not think he could remove. I have a second tumor on the side of the neck I have just been accepted as a patient at the Mao Clinic. I was just reading some of the listings on this site of those who have gone through treatment. Many talk about having the voice box being permentally dammaged and and being unable to swallow or eat for years and haveing tubes down the throat for years after radiationand chemo treatment. It sounds really deveastating to me. I did not realize there were such devestating and long lasting effects after treatment. Is being unable to swallow and or eat food due to scarring after treatment common??