Stories of Success and treatments or activities that worked

@jpartner2 thank you for your reply. I’m on the West Coast so I’m going to a facility in the UC system. It’s not proton. It’s the standard equipment and my decision was based on the fact that it’s only six minutes away from our home. That makes it convenient to get to d during the seven weeks.. It also is the latest machine that’s been installed only in the last year so I’m hoping the technology has gotten better.

I hadn’t heard about the ice packs yet, that’s interesting and I do see them on Amazon but nobody’s mentioned so far that the hands and feet are an issue. What was the symptom? Is it pain and tingling? Again thanks very much for your thoughtful response.

simplygrand:
"Finally, I would say that every time I've raised a deescalated treatment plan they've come back and said that the complications of having to go back in a second time if the cancer reappears are very risky. So that is their rationale I guess, because their job is to kill cancer cells and not have you come back a second time."

Sounds like a scare tactic , I got similar responses but detected deceit.
Probably more to do with revenue losses associated with scheduling changes and less treatments.
Same reason they don't want to use the NavDx test 1/2 - 2/3 way through treatments IMO.
Research suggests once tested negative recurrences are minimal and if it does recur its within a few months after treatments end.

Everyone’s experience with this disease is different. That’s the one thing you can count on. I hope you are one of the lucky ones that has minimal side effects. I myself am just thankful that I survived and that I am still on the right side of the grass. Anything else, I can deal with. And there have been some doozies. Good luck.

69 years old and completed 35 radiation and 5 chemo (Cisplatin) for SSC at base of tongue, stage 1 HPV, about 9 months ago. I received proton treatment at Mayo in Phoenix. I am very grateful for where I am today. Can eat anything I want, back to all my normal activities - mountain biking, golfing, strength training, etc. Only lost a few pounds but have gained them back. I felt I was in real good shape going into this and that helped.

It wasn’t an easy journey. Had to force myself to eat due to loss of appetite and swallowing pain. Wanted to stop radiation the last week due to severe dermatitis, but got through it. Didn’t use prescription pain meds just a rotating mix of Tylenol and ibuprofen that last couple weeks. Stopped chemo at 5 sessions instead of 7 due to tinnitus, which I still have. The chemo plays a much smaller role in the treatment plan. They told me 5 was actually the goal and missing the last two would not make a big difference. Makes me wonder the same about the radiation treatments. Should the conventional regiment change to fewer sessions like the clinical trials are supporting.

Today I have mild lymphedema & dry mouth but manage through it OK. Zylitol gum helps. Taste is completely back. My best resource at Mayo was the speech pathologist. She understood the side effects much better than the oncologist. Instructed me on neck and swallowing exercises to do, explained side effects better and was a very helpful resource to get through it. Highly recommend one if your facility has that available.

I do daily neck exercises to ward off fibrosis with manual lymphedema massage and use red light therapy. Integrative medicine doctor recommend Turkey Tail mushroom supplements to improve immune system and prevent reoccurrence. My 3 month scan was good, with a one year scan in October coming up. All indications are I am clear of cancer. Positive mindset, faith and excellent support (wife and friends) were critical. With God’s help I consider that a success story.

@jmcfadzen
I love this! We need a little bit more of this I think on Mayo Connect site. I'm a bit older than you are, but similarly I'm in great shape & do strength exercises and hike two to three miles a day in the hills. I had essentially zero health problems before this set back. For that reason, I am somewhat hopeful that I can withstand this and come out OK on the other side with minimal loss of function.
Very nervous about the cisplatin because I already have fairly severe hearing loss at high frequencies and I'm hoping that this drug won't exasperate that too much. When I mention my concern to the oncologists they tend to screw up their face.
I already pre-started the swallowing exercises and neck exercises to become familiar with them prior to treatment. Nothing like muscle memory to help you get through them when it hurts.
Not at all familiar with red light therapy, but I guess I'll be learning about that later. In any event I'm so happy for you and happy that you shared your positive story. I hope others share positivity as well because the positive stories can be as impactful as the treatment itself. Sincere thanks!

@simplygrand
Mayo had me do a pre and post hearing test due to the effects of cisplatin. I have heard of another type of chemo drug other than cisplatin that doesn’t have that side effect, but not sure of the name. My experience at Mayo was great as they provided many different resource to help someone through the treatment. But the biggest is yourself. Go in knowing you’re going to have to fight, keep a positive attitude and measure success by small improvements.

@jmcfadzen

Thanks! Locked into Cisplatin at this point. Tomorrow is first day. The only question is how many weeks of it will they encourage me to endure.

Hi @simplygrand

At age 39, I was officially Stage IVB T2N3M0 tonsil cancer on my left side caused by HPV and 3 infected lymph nodes. I am 18ys out (2008 diagnosis) where I had 35 rounds of Photon radiation which amounted to 70 Gy (7weeks) and 3 rounds (211mg each) for a total of 633 mgs of the platinum-based chemo Cisplatin.

I had other issues come up along the way with the radiation as it’s a gift that keeps on giving. So be very aware of what is going on inside your mouth and throat. To name a few off the top of my head, it destroyed my thyroid giving me Hypothyroidism (makes you feel fatigued and most of the time you gain weight too) so now I have to take a pill for it for the rest of my life. Watch your bone structure and tooth decay in that region too- so make sure you go to your dentist every six months. Took me just about 2yrs to get my weight back maybe because it was mostly muscle that I lost as I am an avid weightlifter. I was 222lbs when I started and went as low as 205lbs my last week of radiation treatment, but I was pretty lasered focused as I didn't want a feeding tube. Paralyzed my left vocal cord so my voice is not as loud as it once was, and swallowing and speaking has gotten worse but going to a speech/swallowing therapist has helped as I can basically eat anything just may take longer depending on what it is. Scarring of both upper lungs. Had dry mouth so I researched and found ELECTRICAL STIMULATION ACUPUNCTURE in 2015 where I was tested to get a baseline and retested after 8-10 appts. and had great results. Never needed to go back and has been a non-issue even with only one working salivatory gland, and I don't have to carry a water bottle with me either to this day. Since then, I believe there are other additional avenues like sprays to help with that. My accessory spinal nerve is damaged (called Brachial Plexus Legions/Neuropathy) which is why my left shoulder sags (droopy) and trapezius muscles wasting away with winging of the scapula which includes limited range of motion. Also, causing constant pain except when sleeping along the neck and under the ear in addition, to affecting other nerves and structure in head & neck region. In addition, I would see a dermatologist at least annually to watch for any potential skin cancer from the radiation too as I received a couple spots in (November 2024) with that, but it was basil cancer which was highly treatable.

I was also diagnosed with Tongue cancer on my left side of my mouth on March 1, 2024, and had a left partial glossectomy with a radical forearm free flap surgery on April 3, 2024. It also included a modified radical neck dissection surgery taking out some lymph nodes. This one was not caused by HPV and was most likely from too much radiation once again from my first cancer which was on my left tonsil (2008) as it is literally adjacent to it. You will also have to be very aware of the higher chances of getting aspiration pneumonia and lymphedema after these surgeries. My aspiration pneumonia came only 3 months after the surgery which was really bad as I had to go to the ICU and have 7 liters of infections fluid drained from my chest cavity over a period of seven days. I lost 15 lbs. of body weight from that, and I haven't been able to add it back on so far. Matter of fact, just recovering from another bout of it right now but way less than the one in 2024.

One thing I am finding out through research is there is this big de-escalation in Head & Neck cancer treatments especially with radiation coming about for people who got it as a result of HPV, and I have attached four articles on it.

Good news is that I am still here and still fighting to improve on my current conditions every day and it's an unbelievable grind after these three different cancers and their short and long-term side effects. This is some other stuff, but I would be writing for days and others who responded mention so of it anyways, so I'll end it here. I am determined to still find time to get to the gym and lift heavy weights for 2 1/2 hours three days/week and do all my regular physical projects and chores around the house and play softball in a competitive league.

I wish I had this site when I first started my journey in 2008. Hope this helps and good luck on your journey as it is a little different for everyone.

@simplygrand
The chemo will dehydrate you fast, so drink more water than you think you need. It helps with the constipation. Mayo nutritionist recommended 100 oz./day.

In 2019 Squamous cell carcinoma of the Cavernous Sinus. 9 chemo 33 radiation 4+ years Keytruda. Except for the loss of sight in one eye and Trigeminal Nerve Damage I am doing well. I've learned to enjoy all the little joys of life and ignore the little annoyances. Good luck to all.