Category Archives: Support and Resources

Need help with rides to treatments? Need help with expenses? Need to talk to someone who’s been through what you are going through? Check out the amazing resources available to cancer patients, and please feel free to chip in with your own.

Why some HPV infections go away and others become cancer

hpv-virusThis is what we’ve all wondered: Was it a weak immune system that led to my or my partner’s HPV throat cancer? Turns out, not so much.

For people infected with the human papilloma virus (HPV), the likelihood of clearing the infection and avoiding HPV-related cancer may depend less on the body’s disease-fighting arsenal than has been generally assumed. A new study finds that the body’s ability to defeat the virus may be largely due to unpredictable division patterns in HPV-infected stem cells, rather than the strength of the person’s immune response.

via Why some HPV infections go away and others become cancer.

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Mayo Clinic Holding Clinical Trial for HPV-Positive Head & Neck Cancer

 

The bad news is, HPV+ throat cancer is on the rise.

The good news is, it is highly curable…90-95% in non-smokers where the cancer that hasn’t spread outside the neck.

The bad news is, 1 in 3 people after standard treatments have significantly long-term effects.

The good news is, the Mayo Clinic is soliciting people for clinical trials for treatments that will still be curable but with far less side effects and toxicity.

I asked John if he would have been willing to go to the Mayo Clinic for a clinical trial and he said YES.

If you would like more information about this trial, please contact: Dr. Daniel Ma at the Mayo Clinic by email: Ma.Daniel@mayo.edu

I am unable to embed a youtube video on this site, but please see more here:

Mayo Clinic | Clinical Trial for HPV-Positive Head & Neck Cancer – YouTube.

 

 

Acupuncture for Dry Mouth (Xerostomia) after Radiation

Acupuncture needles are hair-thin and relatively painless.

Acupuncture needles are hair-thin and relatively painless. Thomas Del Brase photography

 

John and I are both Licensed Acupuncturists, in practice for over 25 years. In a strange coincidence while John was in the process of getting the lump on his neck diagnosed (we knew it was cancer; we just didn’t know what kind yet) a patient came to see him for loss of saliva after radiation for, yes, HPV+ tonsil cancer. He had just finished his 6 weeks of radiation and was having trouble eating and swallowing. The first treatment stimulated saliva flow immediately, and after a couple more follow-ups he was greatly improved.

When John was diagnosed a few weeks later, this man became a tremendous source of information on what to expect.

Fortunately, there is research available on the efficacy of acupuncture for radiation induced xerostomia, carried out in San Diego, California. At the time we relied on research carried out in China.

John had an acupuncture treatment every day during his 35 radiation sessions. Now, while not everyone has the luxury of having their very own live-in acupuncturist, everyone can benefit from either preventative or restorative treatments, as John’s experience with his patient showed. Frequently during John’s treatments he would feel saliva beginning to flow.

Saliva is not only necessary to help moisten food for chewing and swallowing. It is equally essential for its anti-bacterial effects for preventing tooth decay. John’s dental health was good, and in addition to his daily acupuncture treatments he wore a mouth-guard device that fit over his teeth and was filled with fluoride gel. While he has had several cavities filled in the past year his teeth have apparently been re-mineralizing.

Acupuncture releases one’s own endorphins, which are like having your own little internal opiate factory. The treatments are deeply relaxing. While John did finally lose a great deal of the thinner saliva he never lost his saliva production altogether, which made it easier for him to continue swallowing and get back into eating solid food as soon as he possibly could. His radiation oncologist noticed and commented on the fact that he never completely lost his saliva as so many did.

Our local cancer center offers weekly acupuncture sessions. Check with your oncologist for a reputable Acupuncturist in your area. This works.

In case you would like to share this information with your own acupuncturist, here is the treatment we did on a daily basis:

Bilateral ear points: Shenmen, Point Zero, Salivary Gland 2′ and Larynx.
Bilateral: Lung 7, Kidney 6
Ren 24
Affected side: Alternating. One day Stomach 5 threaded to Stomach 6, the next day Small Intestine 17. These were discarded later in the treatment series as these areas became to painful to treat due to radiation burns.

The Link Between HPV and Throat Cancer (Infographic)

While cancer death rates are down, HPV throat cancer continues to be on the rise.

 

HPV Throat Cancer Infographic

HPV Throat Cancer Info

“Road to Recovery” Provides Rides to Treatments

The American Cancer Society’s Road to Recovery program was the most incredibly helpful service for us.

John thought he would be able to drive himself to his daily radiation treatments. And, for the first week, he could.

We live 40 miles from the cancer center that housed the recommended specialized radiation therapy machine. The machine had only been in use for two weeks, and John’s treatments were long– sometimes he spent as long as 50 minutes on the table, strapped down in his mask, while they precisely calibrated the machine to focus on the tiny lesion on the back of his tongue.

At the end of his first week of radiation John had his first chemotherapy infusion, done overnight in the hospital in order to keep him hydrated to protect his kidneys. He sailed through it, but the next day when he got home very strange things began to happen. I won’t go into the details here because first, I don’t want to scare anyone and second, the visual side effects John encountered happen in less than 1% of people getting Cisplatin. Driving was out of the question for him, and I was working full time covering the practice for both of us.

We had plenty of friends who were ready to help John with rides, but none of them lived in our town. This meant someone would have to drive up the hill from Chico, pick John up, drive him the 40 miles back to the Cancer Center in Chico, bring him back home, and then drive back to Chico. It was just too much to ask people to do every week day for six weeks.

On top of this, John was the first person to receive a new radiation protocol. On Thursdays he was getting two radiation treatments, 7 hours apart. This meant two trips to Chico on Thursdays.

This is where the incredible Road to Recovery program kicked in for us.

The American Cancer Society matches up volunteer drivers with cancer patients who need rides to their treatments. The volunteer picks up the patient in their own car. I really doubted they would be able to find drivers for us who would be willing to take up to two hours to take John to Chico, wait while he had his 30-50 minute session, and drive him back.

But they did.

I called the Road to Recovery Program at 1-800-227-2345. Their requirements were few.

First, they needed a week’s notice to coordinate volunteers.

Second, the patient must be ambulatory, meaning they must be able to get in and out of a car by themselves.

Third, they can’t drive patients later than 5:30 pm, during American Cancer Society hours. So I did call on friends to drive John to and from his Thursday evening treatments.

I gave them John’s schedule, and a few days later they sent me a calendar print out with the names of John’s volunteer drivers filled in. They weren’t able to fill in every single day, but they did fill in as often as four days a week some weeks. This made it much easier for me to ask friends to fill in the remaining trips.

John’s volunteer driver called him the night before to get directions and to confirm what time they should pick him up. Each of his drivers refused any compensation for gasoline and were beyond happy to be able to provide this service.

I kept a whiteboard in the kitchen with the names and numbers of friends and volunteers, and every day I would write in big red letters, YOUR DRIVER TODAY IS _____.

When our lives get more back to normal I’ll be signing on as a volunteer for this incredible service. It will feel great to give back!

BUT WAIT– THERE’S MORE!!

In addition to the Road to Recovery service, the American Cancer Society also helps with your own gasoline expenses. All you have to do is keep a mileage log of all medical-related trips, and the Cancer Society reimburses you so many cents per mile in the form of a debit card, for use only at gas stations. Because all of John’s doctors and providers were at least 40 miles away, and because he needed physical therapy after he healed up from his treatments (by now he was able to drive himself again), and because gas was over $4.00 a gallon, these gasoline debit cards were extremely helpful.

Support from the Imerman Angels: “I Promise You, I Will Not Let You Go.”

Ten weeks after John’s last radiation treatment for HPV+ tonsil cancer it seemed as if his recovery had stalled for good. Still unable to eat even soft foods without pain, he was getting cranky when not utterly withdrawn and I was getting exhausted. Most of the time it seemed he wasn’t really “there,” and who could blame him? I’d be checked out of my body, too, if I was in that much pain for so long. But I was lonely. I missed him, and was beginning to wonder if he’d truly ever be himself again. His doctors all thought things were coming along just fine, but they’d never actually been through everything he had, had never been in unrelenting pain, week after week.

first rad 3 Worse yet, I’d gotten two phone calls that week from men in their 50’s, newly diagnosed with the same cancer, looking for advice. Overhearing one of these conversations, John said in frustration, “You don’t know what it’s like to go through this. None of the doctors can tell you what it’s really like. No one knows how this feels!” I had to agree with him. No matter how much empathy I was capable of, I truly didn’t know what it was like to, among other things, be bolted down into a hard, form-fitting mask six times a week for up to 50 minutes at a time. In my meditation that night I again asked for help for John.

As a cancer caregiver I’ve been repeatly reminded that all you have to do is ask. Not only does help arrive, but the right kind of help arrives, sometimes delivering a better and more precise solution than what you’d asked for. This was one of those times. The next day I got a call from a Cancer Center volunteer (I’d never gotten a call from them before), wanting to know how we were doing. I described John’s frustration with having no one to talk to who actually knew what he was experiencing. John entered treatment a strong, healthy guy who worked out 5 times a week, and instead of getting better once this was all over he was still weak and tired and in pain and discouraged.

The volunteer had me look up Imerman Angels on my laptop, explaining that they match cancer patients and caregivers with people who’ve survived the exact cancer you are dealing with. She strongly suggested that I could also get help from fellow caregivers who’d been down the same road, and so I filled out the online form on the spot. I also sent the link to John, doubting he would follow through and understanding I couldn’t push him to do so….but he did.

Imerman Angels logo

The Imerman Angels organization found us a match more quickly than I could have dreamed.

Two days later when John was at physical therapy the phone rang, and Hector introduced himself in a rich warm hispanic accent as an Imerman Angel who had been matched with John. He asked me a few questions about where John was in his treatment timeline and then told me that it had been a year since his own treatments for HPV+ throat cancer had ended. Like John, he’d come into his diagnosis strong, fit and healthy, and like John he’d had surgery, chemo, and the strongest and lengthiest radiation treatments they give for any cancer. Like John he’d had a feeding tube, and like John he’d been beaten up more than the average person by the chemo.

“I was training for the Iron Man when I was diagnosed,” he told me. “I lost 60 pounds of pure muscle. I couldn’t eat or talk for a month. I ended up on dialysis for awhile from the chemo. I want you to know this….I am working out at the gym again. I rode my bike around Lake Michigan this morning. I am training for a marathon again. I have my health back. I know exactly how John feels right now, that this will never end, that he will never have his life back. But I will tell you this, John will start feeling like himself again, and very soon.”

Hearing this from someone who had actually been through the same ordeal was the most reassuring thing imaginable. Hearing from somene who had been athletic before, and had come back from the weight loss and fatigue and treatment toxicity to resume an athletic lifestyle was the very thing John most needed to hear. It spoke directly to John’s greatest fear.

Hector went on to tell me that his wife “was the hero of my story,” and asked if I would like to talk with her some time. I had to go to work and scribbled down his Chicago phone number. I wasn’t sure if, in his current state of withdrawal and apathy, John would call him back.

“Will you do me a favor, Hector? If John doesn’t call you back, will you please call him again this weekend?”

And in the kindest, warmest gentlest voice imaginable, in that velvety rich accent, Hector said the words that marked the beginning of our next phase of healing:

I promise you. I will not let you go.

I hung up the phone, sat down, and bawled like a baby.

When I came home that night John had talked with Hector for over an hour and was buoyed by the conversation. The next day I called his wife Susie. We laughed at the conflicting feelings of loving someone with all your heart and working your hardest to save their life while simultaneously wanting to kill them. “When you’re done with treatment you think, ok, now I’ll start to get better,” Susie said. “But the first ten weeks after the end of Hector’s treatment were hell. They don’t tell you how long it is before you really start feeling better on a day to day basis!” Both Hector and Susie reassured us that not only was John still going through the hardest part of the entire journey, but that he was very close to the end of that terrible phase.

Susie described Hector during that ten weeks after treatment as “not being in his body.” Friends would visit and say that despite the drastic weight loss Hector looked great, and Susie would stare at them, wondering why they couldn’t see “that wasn’t Hector!” I explained to her how I felt that John couldn’t even really see me, or consider what was happening to me throughout all this, and she bluntly said, “You’re right. He can’t right now. But he will.” She continued, “I promise you, John will be back in his body again. You’ll know it when you look back and talk about this in the past tense. You’ll know it when you can talk about it with wonder and amazement as something you survived together.” This was exactly what I most needed to hear, and she was right. A couple of days later it was as if John started coming ‘back online’ again, at first briefly, and then for hours at a time.

the mask Two weeks later on July 14th, a date neither of us will ever forget, as we were sitting out on the deck, John started talking about everything that had happened…in the past tense. He turned and looked at me in wonderment, as if really seeing me for the first time. “How does someone get through something like this without someone like you by their side?” he asked. I looked at his clear, open face, into his concerned and caring eyes, and with tears running down my cheeks said, “Welcome back.”

And now? John’s recent follow-up PET scan was all clear (NED, baby!), he’s started back to work part-time, he’s rehabbing the nerve damage to his shoulder from the chemo and he’s slowly working out at the gym again. He’s mostly eating solid food now, though it’s not yet a pleasant experience. His wicked keen sense of humor is back in full force, and he is enjoying life very, very much. Best of all, just as Hector promised, he’s starting to feel better every single day. We know that this is just the beginning, and that it will be a full year before John is completely over some of the side effects, but we now both have hope that he will continue to recover.

From the Imerman Angels website:.

Imerman Angels was created on the belief that no one should have to fight cancer alone and without the necessary support. At 26 years old, Jonny Imerman was diagnosed with testicular cancer and began his fight against the disease. Throughout his experience, Jonny was lucky enough to have loving support from his family and friends but had never met anyone his age who was a cancer survivor. He wanted to talk to someone just like him, someone who truly understood, and was intimately familiar with his experience. In short, he was looking for someone who had already beaten the same type of cancer. This was the beginning of Jonny’s vision and in 2003, it became a reality when he founded Imerman Angels.

Please help me spread the word about this amazing organization. Whether you’re a confused caregiver, a patient wishing you could talk to someone on the other side of what you’re going through, or someone who has survived and wants to mentor someone who is currently struggling with your same diagnosis, the Imerman Angels are truly wonderful. For the original published article and the comments received, see The Monday Night Cancer Club diary by smileycreek,  http://www.dailykos.com/story/2012/08/06/1117020/-Monday-Night-Cancer-Club-I-promise-you-I-will-not-let-you-go.

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HPVANDME | A Non-Profit Organization

Support for those supporting people with HPV+ throat cancer

You start with a tube...

Support for those supporting people with HPV+ throat cancer

HPV Origin Throat Cancer

Diagnosed July 6, 2012 via Tonsil Biopsy

Caregiving for Throat Cancer

Support for those supporting people with HPV+ throat cancer