Meet others living with Head & Neck Cancer: Introduce yourself

William, thank you for the welcome. I began part of my story in 2002, when my dentist noticed “something” . Well after a biopsy they discovered cancer. Never smoked a day in my life, but there it was, second hand smoke cancer. After removing most of my left jawbone, I was considered “cancer free.” Yea, right! Went to my dentist, oncologist, and oral surgeon every two months or so, regularly. Thru the years they removed many suspicious spots. Twenty years later, my oral surgeon, on word from oncologist, did another biopsy on my right side. Did not show any signs of cancer. However my surgeon notice the left side of my cheek to be suspicious and did a biopsy. Stage IVa soft tissue cancer, fast moving new type of cancer. My surgeon, referred me to a younger surgeon, new oncologist, new plan. My doctors said I need newer, younger, specialist. Well, I got them. Lucky enough to live close enough to the Sammons Cancer in Dallas. Am going there now. Have had surgery, 32 rounds of radiation (horrible), and over 50 chemos. While under going radiation and chemo, the cancer come back in my head. They had warned us it could. My Oncologist began chemo, chemo and Key Truda. Key Truda was every third week. Now present day, I told my doctor I wanted to stop my chemo. He said after two clear scans I could and continue with Key Truda every 3 weeks. He said they didn’t know if it was the chemo or Key Truda that said bye to cancer. So right now, I’ve had my first scan since being off. Chemo and it still “cancer free”. I will continue as is until…. Just glad to finally find people like me. Fighting to live.

Hello @judyrichter Welcome to the Head and Neck Cancer group. If you have a question you can begin a new discussion or hop on an existing discussion. If you have a comment on another discussion just feel free to jump in. We are simply patients helping patients. Those of us who have been down the long road can often help those who are just beginning the journey. The doctors, unless they have actually had cancer, can only answer second hand if at all to issues we go through.
Personally I would rather belong to a church choir than a cancer group but alas cancer has taken my voice somewhat, so I play the cards I've been delt and there we are.
Are you new to this cancer?

Squamous cell oral cavity head & neck cancer

Hi Colleen,
I’m hoping you can help me out. I’ve been recently diagnosed with throat cancer, base of tongue, HPV positive. I’ve scheduled an appointment with Dr. Moore for next week for an initial consult. I’m traveling from New York for this appointment and my question is whether or not it would be possible to meet with other members of the team i.e. oncology, chemotherapy, etc…. If you could point me to the right person in the department that would be awesome, I’d just like to make the most of my visit there - and I’d like to get treatment started ASAP.

I’ve had all of the tests run at the hospital in New York and we have a treatment plan ready to go. The reason I’m looking for a second opinion is because I was hoping to have de-escalated version of radiation as opposed to the six or seven weeks that my Dr’s here in NY are proposing.

It was very good news all the way around. On to my next adventure and chapter.
Thanks, Jon

@zeip8288, just checking in. How did the check-up go? How are you doing?

In October 2022, I was diagnosed with HPV throat cancer I had a tumor growth the size of small marble between my tonsil, my voice box, and at the base of my tongue and a couple of cancerous lymph nodes in my neck .I was extremely frightened, I had a biopsy done in Nevada and then proceeded to go to the Minnesota Mayo Clinic beginning of November 2022 to get 35 sessions zaps of proton radiation to both sides of my neck and throat and seven doses of cisplatin chemotherapy. It has been a long-haul, but the best decision I’ve ever made, the oncology and radiation doctors nurses at the Mayo clinic were wonderful they have become friends of mine I have been cancer free since I do go for testing every 4or 5 months. I have been cancer free since . And I get tested here in Nevada every six weeks. I try to be very vigilant about it. As far as my symptoms are concerned, it took me over a year to get about 80% of my taste buds back. It took me about eight months to swallow without getting food stuck, I do drink, a lot of water and early on I drank a lot of chocolate boost when I could not eat. I have always kept the faith. Things get better and they have !!! so keep the faith !!for me. Prayer has helped a lot and I volunteer at the homeless shelter in Las Vegas . It helps me. Even 13 months after I still get dry mouth but I use a humidifier and I try to be very proactive and keep a positive attitude I am very appreciative to the Minnesota Rochester Mayo clinic doctors and nurses etc. that helped me get
through this challenging time.

Oh....I've been praying plenty!

I don’t want to sound preachy, but I don’t think I ever lost hope because I started praying. I always thought in my head that I would fight until my last breath, but I am also certain that God gave me that strength. Now that I’m cured I say thank you for that every night. Try praying. It can’t hurt right?

Thanks so much for the response. I now realize that there’s just nothing that can prepare one for what I'm experiencing. Physically, emotionally, mentally and spiritually. All aspects of my life have been significantly impacted. Of course, I'm singing to the choir. Physically, I really didn't think I would survive the other worldly pain and sickness while recovering. After about 4 weeks in, I started to feel a little bit better physically. Then, I crashed so hard emotionally and mentally. Intense anxiety and panic off the charts! Everyday, 24/7. Damn close to debilitating and incapacitating. This went on for a month. Everyday and every second feeling like I was going to completely lose control, flip out, go insane. It was basically one second at a time. I've never been so scared almost every waking moment.
Anyone else experience off the charts anxiety and panic during your recovery? Mayo, thankfully, prescribed some medications that relieved most of the anxiety and panic and is allowing me to sleep.
This has been like a horrible, pain ridden nightmare. It's a damn good thing that I never completely lost all hope!