Meet others living with Head & Neck Cancer: Introduce yourself

Hi Adrienne, My fiance was diagnosed with squamous keratinizing carcinoma just one week ago. I am on here to help support him by researching from other survivors.

We are getting ready for more meetings this week. They recommended radiation, chemo and surgery and believe it will be 80-85% success rate. We have lots to learn but I have also ready about proton therapy and immunotherapy. Do you have any suggestions around these alternative options?

Thanks in advance!

Hello @nmstauffer8 and welcome to Mayo Clinic Connect. I am sorry to read about your fiancé's diagnosis last week. It is wonderful that you are supporting him by doing some research ahead of his next appointments.

As we wait for members to reach out, I will also recommend the Cancer Group as that may provide a broader audience to pose your questions. I am not able to move your post, so feel free to explore that group here: https://connect.mayoclinic.org/group/cancer/

Also, one last thing I want to share with you is that Connect also has a Caregiver Group, if you become interested in connecting with others like you supporting and taking care of others. Join those members here if you feel compelled: https://connect.mayoclinic.org/group/caregivers/

How is your husband feeling, both physically and emotionally following diagnosis?

Hello nmstauffer8,
My name is Loli, and I am a cancer survivor since 2013. Mouth cancer in my cheek.
When I was diagnosed, my first visit was to church to give thanks for, at that time, 62 years of healthy life. From there, I went to Staples and bought a ring book with dividers. Then, I went home and started preparing to do my research. First divider, Doctors; second medications, third treatments, fourth questions and answers; and so on and so forth. I kind of made it into a project of life, and I was ready to have all the information in one place. When going to doctors, always go with someone else who will be in charge of writing all the answers to the questions that you will have prepared before your appointment. Research all the possible treatments, the best doctors.
Where is your fiancé's cancer?

Hi Loli, My fiance's cancer is in the base of his tongue and lymphnode on his neck, squamous cell carcinoma keratinizing, p16 negative. We've been to multiple appointments and very overwhelmed. I have a notebook and an app that records the discussions with the doctors. We are very concerned about chemo and radiation and long term effects. We have been looking at immunotherapy but the success rate isn't as high. He is only 46 years old and has so much life to live. The chemo/radiation cocktail is being given an 85% success rate but the long term effects seem so overwhelming.

Hello, @nmstauffer8
You are doing very well to record the visits and to get as much information as possible. I have had a head and neck cancer in my tongue with surgery and radiotherapy as my treatments but have met many younger people who have had chemoradiation. It is a very tough treatment but from my observation people come through it well. Yes, there are side effects - mainly for the teeth - but these can be dealt with as treatment and recovery progresses. I don't really see the long term effects for a healthy younger person to be a huge problem when you compare it to NOT treating the cancer with the most effective treatment. I hope this isn't too assertive as answer and wish you and your fiancé well.

Thank you, @alpaca. We just learned his liver enzymes are high ALT/80 and AST/106 so not sure how this will alter the treatment. We also have looked into immunotherapy but it doesn't appear to be as successful. By chance, have you tried immunotherapy? Thank you!

@nmstauffer8 I'm going to repost from long ago with an update. My husband has undergone 40 sessions of hyperbaric treatment for necrosis of the bone of his scalp and neck, without much improvement. They call this late delay radiation effect. Frankly, they did not think he would live long enough to suffer these long-term effects. The chronic pain he lives with is from the life-time maximum radiation which he received in trying to stop the cancer. If we and the doctors had had a crystal ball, we would have sacrificed the transplanted kidney and gone to immunotherapy in the beginning. He is on Libtayo now, without any side effects.
He also has undergone a genetic test. His oncologist says that there are exciting new treatments coming along soon.
I encourage you to keep those records of visits and treatments.
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ORIGINAL POST: 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. Three doctors had told him to go home and they would make him as comforable as possible. 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 500,000 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.

In New Zealand immunotherapy is not funded by our free medical system but some people pay for it privately. I don't think insurance covers it to any large degree. Form my understanding it is only effective for 20% of head and neck cancer patients but much more effective indeed for people with melanoma and other cancers. Your fiancé seems to have a rarer type of HNC so I shouldn't really make any suggestions. P16 + cancers probably react better to chemoradiation. One such patient in my group has had a good outcome from Keytruda and targeted radiotherapy to the mets in her lungs. These days radiotherapy is more targeted and sophisticated. You could ask more about this. There is also Proton therapy with fewer side effects.

nmsstauffer,

My sister had tongue cancer 22 years ago. She had surgery at Mayo Scottsdale and at that time she did not need any treatment. 18 years later, it came back and she did not need treatment; but six months after that, the cancer came back somewhere between the nose and the cheek and they could not get to it, so they treated it with chemo and radiation. That took care of the very aggressive tumor. Of course, radiation did damage and she ended having tongue pain that won't go away. Also, her thyroid was affected. Her teeth have not suffered like mine though. But we are alive and we are willing to take the damage with a grain of salt.
For me, the damage was to my jaw, and I have osteonecrosis of the jaw; but my doctor was totally against hyperbaric immersion, and they have been treating me with vitamin E and a medication that improves bone blood circulation. (I think we cannot share medication names in this page), and so far, so good. I have lost three molars due to receding of the gum; but despite dryness of the mouth at nighttime, I have managed to keep a healthy mouth and teeth. I do have my teeth cleaned four times a year and I am meticulous in my cleaning.
I hope this information that seems banal, gives you a perspective of life after radiation. I did not do chemo.
Loli

Hello, the cancer I have been treated for is stage 4 squamous cell that had metastasized in my lymph nodes.