Dear Son of TC Mom

So sorry you are both going thru this. It is scary. I went thru Stage 4 surgery and radiation treatment last year. They took basically half my tongue and all my lymph nodes on the associated side of my neck. The doctors, of course, have to warn you of all the potential negative results. Which makes it even scarier.

Recovery from surgery was intense but quicker than that from radiation. I could see improvement nearly every day after surgery but radiation was more like every week or longer. Radiation also wasn't as intense a process. But, I am happy to share with you that I am a year out and most people would never know unless I told them. My speech is pretty good and I can eat most foods again. My scars healed fairly well.

Some of the tools that helped my mood. Weekly calls or zoom meetings with different friends and family. Journalling/writing both my thoughts and my medical notes. Practicing faith and prayer (different for most, so whatever that means to you). Yoga, walks, jogging, surfing, biking, whatever your favorite way is to get outside and experience the joy of nature. Dancing. I would play my favorite music in the hospital and do a super simple dance next to the bed while hooked up to all those sensors and drain tubes, etc. Who cares what i look like at this point. Reading stories of others and how they made it thru similar.

Please also know there are counselors and specialists who can help with the stress and fear of all this. Everyone's path is different. Try a lot of different things and hopefully you will find a few that help.

Keep us up to date on how everything is going.

Best
Nels

Darlene

Welcome to the group. The best suggestion I got was to take notes and journal. I went thru very similar as your husband. Getting my thoughts on paper gave me peace. Plus, i would keep a medical journal so i could get all my questions answered and keep track of my treatments and improvements.

At one point, I made up a matrix of recovery tasks (medicine, food, faith, meditation, sleep, exercise, etc). I would score myself every day on the different activities and give myself a treat for high scores. Kept me busy and feeling like i was making progress.

This group has been wonderful and helpful for me. Please ask whatever is on your minds.

Best
Nels

Dear Son of TC Mom

I had a wrist flap in April of 2020. They took about 48% of my tongue. I was stage 4. That's a lot but my speed is good. I have a slight lisp and difficulty with some words. It's minor, everyone understands me even thru a mask. I can manipulate food pretty well. Both speech and food take months. I had 60Gy units of radiation which finished up in July of 2020. I am almost a year out from that and my speech and ability to each spicier foods is still coming back slowly.

If you make it thru the first 2-3 days after the wrist flap surgery, the chances of success increase greatly, after about a week, I was told it's essentially safe. Obviously, there are no guarantees of success, even for me after a year, but wanted to share what I knew.

Best
Nels

Hi! I can absolutely commiserate. I have leukoplakia lesions on the roof of my mouth, and on my upper and lower gingiva. I have been watching it progressively spread for the last two-three years, but so far since my biopsies have been negative for squamous cell carcinoma or dysplasia, my doctor just wants to stay in "wait and see" mode. Based on my research, my lesions are definitely PVL and I would prefer to take a more aggressive route, but have yet to find a doctor who agrees. I have started a Leukoplakia Support group on facebook if you'd like to join. https://www.facebook.com/groups/310461600522959 (hope that's ok to share here). It's small at this time but hopefully we can grow a community to support each other. I think doctors see PVL so rarely that they aren't as familiar with it as they are with lichen planus, lichenoid reactions, etc. Good luck and continue to advocate for yourself!

Hi Stephen, its been a long time since I have been on line here, but yes I have the same thing and I have only been out of radiation for the past 12 years, I am kind of happy that I always wear a mask now due to spitting and chipping teeth. I usually just carry a napkin or cloth one, not sure but I can ask the oncologist that I am seeing on Monday take care, Michele

UPDATE for those in my shoes who come across this in the future. This particular chemo cocktail hasn't been that bad for me. It takes about a week to start to feel myself again. And day 3 after infusion is pretty miserable, but I get 2 weeks of feeling pretty normal and leading an active life for a 45 year old before having to go through it again. With my anti-nausea pills figured out it's not that bad.

I got type 1 diabetes from the immunotherapy, switched to chemo which is going pretty well. It's Carboplatin/paraplatin and Paclitaxel/Taxol/Onxal. I feel great the day of, a little GI upset the next day, more the next day, day 3 after is the worst -I have trouble eating and my energy is low and I just get depressed. Then I feel better and better until I'm able to work a week from the infusion. That leaves 2 weeks of feeling pretty normal and leading an active life before the next round knocks me down again.

Hello Wendy. I would be curious to know what anti-nausea meds he's tried. I saw Zofran mentioned. And I saw that ice chips/ginger/CBD were also suggested but none of that worked for me. Here's what did:

Zofran (ondansetron) 8 mg three times a day for 3 days starting day of treatment
Decadron 4 mg twice a day for 3 days starting day of treatment (taken with food)
Compazine 10 mg (prochlorperazine) every 6 hours as needed

I was asked to stop Decadron after 3 days but to continue with Zofran and Compazine as needed. And it was. I also tried cannabis (not CBD but THC) and it was helpful in providing me with a good nights sleep. Later, four or five days after a cycle when things started to settle, it sometimes stimulated my appetite- that's when I would lean on anything I could get down and really try and pack in those calories. If he can swallow then bring on the milkshakes.

I was also given a shot for nausea which I don't remember the name of- it was in a little box that was taped to my upper arm. It was on a timer and went off 24hrs after my cycle. I can find out the name of it if you want. I was still in a flop sweat half the time, clammy and uncomfortable, dizzy and tired and without any appetite. But I didn't throw up. It wasn't easy but it helped. I'm sorry he's having to go through all this again. Hang in there.

Not sure if they tested for HPV. Doctor didn’t mention it. Plan to ask if it was tested at next follow up appointment. I rarely drink, 3-4 drinks a year at family celebrations, but will avoid alcohol until I discuss with doctor. Thank you for the advise.

Hi Mike,
I found homesupply.net and started buying boost very high protein drinks for my husband, They have 530 calories in them and supply all the vitamins he needs.
This is the only way he can keep any weight on. He still eats what he can when he can but every day is a different world. They are not cheap and insurance won't pay for them but they work. Amazon carries them as well but home supply is generally the least expensive because they don't charge tax and they have free shipping as well. Hope this helps and best of luck.

Hi Betts

I received 30 radiation treatments (60 Gy) for tongue cancer about a year ago. The pain lasted a long time, many months, but is essentially gone now. I have lingering tightness and occasional zingers (nerve pain) but that is more likely from my surgery. You stated the area is smaller. That sounds like good news.

Everyone responds differently to these treatments but I can tell you that I felt like exercise was extremely important to my recovery plan. Even though it cost me calories, I exercised essentially every day. Sometimes that meant light yoga or a walk. Sometimes I felt good enough to jog a couple miles. And, I was able to surf some days (I am lucky and live by an ocean). At a minimum, it helped my mental state, but I could also feel myself getting stronger over the weeks. It was more like two steps forward, one back, as it wasn't like I felt stronger every day.

As for being self-conscious of how you look or having spit cups with you, I get it. I had a feeding tube dangling out my nose and a hole in my throat (left over from the tracheotomy). At times, junk was dribbling out and down my neck behind the dressing and I didn't know it. The tube dangling out my nose cant be missed even if you try. But, I decided the exercise and being outside was more important than my pride. It took a couple days and a couple interactions with strangers of a "hello" as we passed each other on the sidewalk before I started to realize it wasn't that bad.

Maybe a friend or family member can join you? That helped me too. My wife or one of my kids would often join me early on. Also, I would sometimes go out really early so it was quieter/less people.

I hope you continue to recover and find ways to enjoy that which you did before all this. Praying for you.

Nels

Hello. My name is Steve. I'm 67 years old and was recently diagnosed a couple days ago with verrucous carcinoma on the roof of my mouth. They tell me I need to do surgery at UCSF And have an inferior Maxillectomy and an obturator placement. Seems really scary to me, especially since I've had Parkinson's disease for several years. I'm considering my options and started researching today. Who has had the surgery? What are the aftereffects? Is it worth it? Does the cancer come back? I have so many questions and I'm afraid. Please reach out to me and share your experiences. Thank you