Stories of Success and treatments or activities that worked

As a patient one year out and still suffering with all the nasty side effects , demand they put in place a comprehensive plan for comfort of life modality to help you handle the said side effects.
The medical industry is short on helping patients live through the side effects .

@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 it’s to prevent neuropathy from setting in

We ran into someone in the waiting room who experienced that side effect from chemo

Then another friend with a different cancer recommended the use of ice packs to prevent this side effect from
Cisplatin

Also wear ski glove liners so your hands don’t get too cold if you move forward with this

@simplygrand you have the right idea suggesting this thread for a positive outlook. I see there are still some horror stories but it is hard for us as patients to forget all that we went through. Continued life is a strong motivator for completing these tough treatments and there are a lot of success stories. We all have some changes to our "normal" but have learned to accept and deal with them.
I am 14 years from initial SCC surgery on my skull due to tumor in my ear canal. I developed metastatic SCC 18 months after initial surgery but further surgeries and an immunotherapy (Libtayo) have controlled the disease so far through 3 more mets. I am so appreciative of all the medical treatment and care that I have received at Mayo Rochester that is keeping me alive. I have met many goals in those years.....graduations, weddings, and grandchildren to name the most important. Our gratitude for having a prolonged life despite complications is what makes the journey not just livable, but enjoyable.
Go into this treatment with a positive attitude and set some short term goals to reach for. It isn't always easy, but then life is worth some hard work.

A request for a Palliative Care team is realistic with the extreme side effects of this treatment. I don't know how widely available palliative care is, but it is worth it to request.

@jpartner2

Thanks! Great insight. Brought it up at Chemo infusion and they knew about it.

Amazon here I come!

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.