Meet others living with Head & Neck Cancer: Introduce yourself

Hello @joemae1 You need more information from your medical team but I can reassure you that base of tongue cancer that has spread to a lymph node in your neck is quite common and usually successfully treated with chemo and radiation. It's a tough treatment but people recover well. You usually need a feeding tube into the stomach because swallowing is painful during treatment and for a few weeks after it but that will come out after a while and people get very used to it. The good news is that people treated now are getting more targeted radiotherapy and don't seem to suffer the same long term effects as those treated a decade or so ago. I have lots of head and neck cancer friends and they seem to come through this sort of cancer treatment without too many side effects although eating is often a wee bit harder because of radiation scarring.
You are doing just what I always do: looking at the worst case scenario. Do ask your nurse of doctor what the outcome is likely to be for you! You are in good hands.

Hi @joemae1, I'd like to add my welcome. I agree with @alpaca, you don't want to get to far ahead of yourself worrying about what might happen. You will be in good hand with the experts at Mayo Clinic. I'm tagging @msherfinski @jeffk @loli and @deborahe, who can offer their experiences along with @alpaca's. You can read more about their experiences here:
- Laryngeal cancer (recurrence) https://connect.mayoclinic.org/discussion/laryngeal-cancer-recurrence/

For preparing to visit Mayo Clinic, especially in these times with COVID-19, I recommend you also review this discussion and ask any questions you might have:
- Tips: Traveling to Mayo to get medical care safely during COVID-19 https://connect.mayoclinic.org/discussion/your-tips-traveling-and-getting-medical-care-safely-during-covid-19/

Having cancer of the head and neck region is scary. I completely understand. The doctors at Mayo Clinic will explain more about what YOU can expect. Every person is different. When do you go to Mayo?

Any updates on Head And Neck Cancer group?I joined two years ago. Haven’t heard anything. Got an email today. I logged into my account. Still interested in Head And Neck Cancer survivors/patients.

Hi @jano, welcome back. There have been plenty of updates in the Head & Neck Cancer group. See recent and all discussions here: https://connect.mayoclinic.org/group/head-neck-cancer/

I think MSherfinski might appreciate your thoughts about getting the feeding tube removed and recovery post surgery in this discussion:
- Complete laryngectomy https://connect.mayoclinic.org/discussion/complete-laryngectomy/

Jano, how’s the recovery of your taste buds and dry mouth now 2 years out? How about the neuropathy you were experiencing?

Hello @jano At what stage of the process are you? I was last treated in 2014 and I'm pushing on with the usual side effects/ongoing problems. I'm seeing the oncology dentist in Auckland today about my biting issues. I have only a few teeth left, wear a dental plate and mouth guard but I am biting on the "flap" over my left lower gum. It's not much fun but I keep well and I'm glad to be alive.

Hi everyone, This is Loli. I have not participated in a long time. I share so many things with Maureen, it is not funny! I have just started biting my flap too! I have lost a bunch of molars to receding gums after radiation therapy, four to be exact. Dry mouth, only when I wake up. During the day it improves. Somehow, I have stoped juicing and I think I should go back to it. It is the one thing that helped me the most. Seven years for me! My scars are a daily remainder that I am human, and that I am alive and blessed with a bunch of grandkids that love me. My best to all!

Hi , my name is Joe , Virginia , USA , I had a 10 cm tumor in upper esophagus , now cancer free , squamous cell , diagnosed 8/2019 . I take keytruda every three weeks , and PET scans show no cancer.
Glad and thankful to be cancer free , but radiation treatments did a real number on my esophagus, and it looks like I will have a PEG tube for the remainder of my life .

I would appreciate any support , hints , suggestions , etc ! Thanks , Male , age 58 , non smoker , but I have abused alcohol in the past.

Hi Joe, could you share more information? What type of PEG tube do you have? Will you use Isosource or Jevity alone or will you try blenderized food to supplement? How active are you? What support do you have - family, church or other caretaker? Do you see healthcare specialists on a regular basis? Advice is good but in the end many decisions are yours. Are you experiencing any specific problems or issues?

Hi Joe, My husband had squamous cell carcinoma - spindle variety - which started as a lesion on the top of his head and metastasized.. He had many surgeries and radiation (the last of which destroyed his saliva glands). He had to get a PEG tube in the middle of the last round of radiation because he got down to 116 lbs from 140 lbs. When his salivary glands were destroyed, he thought he'd have a tube for the rest of his life. He learned to use tiny sips of water as saliva replacement, and the tube was removed 6 months later. None of the products sold as replacement came even close. Keep trying different things, because you just never know what will be a solution to your situation.

As to that current situation, get a Vitamix or Blendtec blender (medical discounts) and start using REAL FOOD, at least as a supplement to a formula. This was critical to my husband's come back. Do not be deterred by the push-back you will receive from doctors and dieticians, because they don't CONTROL it. Suggest you head over to a Facebook page called Adult Tube Feeding, where you will find more tips than you could imagine.

He also responded to Keytruda, and the PET scans were nothing short of miraculous.

Hey sorry it took so long I haven’t been on for a while. My taste buds have recovered pretty well I have about 80% of my taste. I had no surgery but did have radiation and chemo it was a slow process and frustrating one too. My neuropathy I still have on and off which includes numb toes and cold feet approximately 75% of the time. I wear socks at night. Some days good some days bad and I’ve learned to live with it. I’m thankful when I hear people having it worse than me. Next May will be five years and I’m wondering if that’s the year that you don’t have to worry about your cancer coming back?? I hope you are well and staying healthy. Thank you for listening to me