Metal Nipple Tags

How's that for a title?

Wow, it's been almost three months since my last post! I have really meant to post more. I have a list of a dozen topics I want to write about. But life just keeps getting in the way. That's a good thing. I'm back to my busy self.

On November 17 I went for my most recent surveillance checkup with Doctor Rad at Dana-Farber. It was a little more than a year since treatment. At that point they order a chest x-ray to check for any metastases in the lungs, which is the most common site.

Before the x-ray the technician had me stick those little band-aids in the photo to my nipples. Doctor Rad told me later that sometimes the nipple is not clearly identifiable in an x-ray and can be mistaken for an abnormality. So they have the patient wear these markers. Notice the metal beads in the center. Those show up the x-ray and inform the radiologist of the nipple locations.

My result?

All clear, of course. Had it not been you would have heard about it hear long before now!

I forgot to remove the nipple markers until the next morning in the locker room at work, after I had been walking around shirtless for a few minutes.

I mentioned to Doctor Rad that I was now past the halfway point to two years since treatment. At some point along the way I had heard (I thought from one of my doctors but perhaps not) that my particular kind of cancer, if it is going to recur, almost always does so within two years.

Doctor Rad told me that their main concern at these visits is not recurrence. They don't expect that to happen. Their main concern is the long-term side effects of treatment such as dental problems from high radiation doses to the mouth. It damages the bone regeneration capacity in the jaw and teeth and can lead to serious dental problems. It also means I may never again be a candidate for a dental implant.

[Something I learned in my work: bone is not just a dead rigid material like many of us envision it. Bone is constantly being "remodeled". Bone cells called osteoclasts are constantly tearing down bone and other cells called osteoblasts are constantly forming new bone. That wikipedia article says about 10% of the adult skeleton is replaced in this fashion every year. Some osteoporosis drugs work by blocking the activity of osteoclasts and thus slowing bone recycling.]

My surveillance appointments continue to get wider spacing. My next appointment is not until March and the next one after that is July. Wonderful Wife and I actually miss them! Doctor Rad and Doctor Chemo feel a little bit like family and we always love to see them.

I continue to be amazed how much "cancer survivorship" remains on my mind. I still think of it many times every day. As I've written before, I'm reminded every time I eat and don't have enough saliva. I still panic just a little when I find myself in an eating situation where I don't have access to plenty of fluid, although I'm learning that I can make it, depending on the moisture content of the food and my patience.

Saliva and taste still haven't recovered much if at all over the situation a year ago. I still can barely taste sweetness and that particular taste goes away quickly after the first bite or two. Salty and savory things taste good enough but are still greatly diminished compared to pre-treatment. Saliva is still greatly diminished and is not stimulated by eating. As I wrote back in September I tried Pilocarpine, a drug that stimulates saliva in some people. It did nothing for me. I took it for three weeks and stopped.

I'm mostly accustomed to those side effects now. Although I keep eating sweet things and hoping they'll taste good!

I also think of cancer every time I put on my new slimmer wardrobe. Like I've said before, I like that aspect.

99 Days

Memories of where I was this time last year keep surfacing. We keep talking about them as a family; we're grateful that this year is so much more normal.

Last weekend we went camping at Pawtuckaway State Park in New Hampshire. That's become an annual trip but last year we didn't make it. We thought about going, but I was still in pretty rough shape and we wisely stayed home.

I've been a newspaper reader since I was a boy. I think I've read at least one newspaper almost every day since I was perhaps eight or nine years old. I'm a dinosaur who still subscribes to an actual paper newspaper delivered to my front door every day. I read it over breakfast - at least the front section, the Metro front page and the Business front page. If I have gotten out of bed on time I get to read more of each section.

On the last page of the magazine section the Globe always includes the "This Day in History" feature. It always starts with a sentence relaying what day of the year today is and how many days remain in the year.

It's a measure of how badly I was feeling that I stopped reading the newspaper for a month or two. A year ago today is when I began reading it again. I remember, because that day "This Day in History" reported that there were 99 days remaining in the year.

That's also true today.

Recession

When one becomes a patient at the Dana-Farber Cancer Institute (heaven forbid that should happen to you!), one is issued a patient identification card. You then show that card every time you check in for an appointment. As you know if you read along here, one has many appointments. So that card was always on top of all the other cards in my wallet.

Today I needed to call Dana-Farber to reschedule my next surveillance appointment. As I dug out my card, I noticed that it has become buried fairly deeply in the stack. Treatment is receding into the past.

I've mentioned before that I don't really have vivid memories of the treatment experience. I remember mostly the "good" parts - namely all of the great care I received from family, friends and health care providers. That's kind of how my memory works in life.

(One of the secrets of staying young, if you ask me.)

However, for months I've intended to write about how prominent cancer still is in my mind. I think about it many times every day.

I'm reminded of cancer every time I eat, for example, since taste and saliva are still profoundly affected. The lack of saliva also leads to thicker mucous in my throat so I'm constantly clearing my throat and fairly frequently coughing up a little wad of thick gunk.

I'm still inclined to blurt out that I recently had cancer to people I don't know well. I find myself thinking about ways to work it into conversations (although thankfully I usually refrain).

It feels like a surprisingly significant part of my identity.

I expect that will fade with time.

Here's one more piece of identity. I was talking to a friend about the saliva issues and he told me he had a very positive experience in the past with Pilocarpine, a drug that can help stimulate saliva. At my last Dana-Farber appointment I asked Dr. Chemo for a prescription, which she was glad to write and send to my pharmacy.

But then I didn't pick it up for several days. And I still haven't gotten in the habit of taking it.

Part of the reason is probably that I have to take it three times a day and it's difficult to start a new habit like that.

But more than that, it feels like it threatens the status quo. The side effects are part of that new identity and perhaps I'm more emotionally wedded to it than I would expect.

I've also had moments of concern that it might produce too much saliva - a problem that is very unlikely!

On the topic of memory, I had contact today with the wife of Big Sister's oncologist colleague who kindly gave me remote consultation right after I was diagnosed. I was expressing my gratitude to her to pass along to her husband. I choked up at my desk at work typing those words. For a moment I could clearly remember the fear we felt during that period and the gratitude we felt for information that gave us just a little peace of mind.

I feel like I'm doing a pretty good job of getting on with life but I'm surprised how much cancer baggage I'm still dragging along.

I guess it was somewhat of a profound experience.

Checkpoint

This morning I went for one of my periodic checkups at Dana-Farber. I have visited approximately every two months since completing treatment a year ago.

The bottom line: All Clear.

We trade off seeing Doctor Rad (my radiation oncologist) and Doctor Chemo (my medical oncologist). Today it was Doctor Chemo.

One of the advantages of my particular cancer type is that the site can be viewed directly with a fiber optic scope. During every visit the doctor sticks the spaghetti-sized scope in my nose and looks down my throat.

I hid the image for the squeamish, but for everyone else click here or on the image to see the actual image from the scope screen.

The image is as though you are diving down my throat: the top of the image is toward the rear of my neck and the bottom is toward the front. The big flappy thing is my epiglottis. The entire "floor" of the image is the base of my tongue (the tongue extends down into the throat).

Doctor Chemo remarked that my throat has undergone significant healing in the past few months. You can see that in the comparison between February and today. In the February image the base of my tongue is rough and red whereas today it is smooth and pink.

I was under the impression that I was already in the "surveillance" period, but Doctor Chemo said I actually have just entered that period since I am now a year out of treatment.

My next checkup, with Doctor Rad, is in late October. At that time I will be just about a year from my last imaging study (a PET/CT scan) and I will get a chest X-ray. Sometimes this cancer type spreads to the lungs so they will check for that.

I don't worry too much about these checkups. I assume I'm cured. But it's always nice to have updated confirmation.

Have the Teens in Your Life Been Vaccinated Against HPV?

If you've been reading here for long, you know that the type of cancer I had is now preventable with a vaccine. My cancer was caused by HPV, Human Papillomavirus. It's the same virus that causes cervical cancer, which can also be prevented with the HPV vaccine.

Since 2006, the CDC has recommended that ALL girls aged 11 and 12 receive the HPV vaccine.

Since 2011 the CDC has recommended that ALL boys aged 11 and 12 also receive the vaccine.

The vaccine is delivered in three doses spaced over six months.

Clear CDC recommendations notwithstanding, the vaccination rates are still too low. As of 2013, only 57% of girls and 35% boys had received at least one dose by their 13th birthday.

In a recent op-ed in the New York Times, pediatrician Dr. Paul Offit lamented the low vaccination rates and encouraged his colleagues to make more effort to recommend vaccination to parents. He specifically advised providers to remove sex from the conversation (HPV is sexually transmitted. Most Americans have been infected. Most people clear the infection on their own, but some don't.) and focus on the fact that HPV-related cancers are the only cancers that can be prevented with a vaccination.

Dr. Offit concludes thusly:

Millions of adolescents aren’t getting a vaccine to prevent a known cause of cancer. It takes about 20 years for an HPV infection to progress to cancer. That’s when the bill is due. Given current rates of immunization, somewhere around 2,000 adults every year whose parents had chosen not to give them the HPV vaccine will probably die from a preventable cancer. It’s unconscionable.

I agree completely.

Surprisingly (to me), in the CDC National Immunization Survey (NIS-Teen), the main reasons parents gave for not planning to vaccinate their children against HPV had nothing to do with sex. The main reasons parents gave were:

1. lack of knowledge of the virus and vaccine
2. belief that the vaccine was not needed or necessary
3. lack of recommendation from their pediatrician

As of March 2014 more than 67 million doses of the vaccine have been delivered. The safety of the vaccine is well-established.

If you are the parent of a teen, please vaccinate him or her. If you have a teen in your life, perhaps a niece or nephew, please speak to their parents about HPV vaccination.

It could save the teen's life.

62 Milestones

I've written before about my cycling history. I've been a serious cyclist since about 1994, starting with mountain biking and then switching to almost exclusive road biking around 2000. My seriousness increased through the oughts to the point where every year I would build up to a 200-mile one day ride (Seattle to Portland) and a 150-mile ride around Mt. Rainier (RAMROD). I would also ride in a 150-mile Bike MS ride every September that was a fundraiser for Multiple Sclerosis care and research.

I started commuting by bike a majority of the time in 2005. Given all that, I was generally in very good physical condition.

I fantasized that I would keep riding at a diminished level right through cancer treatment.

No way.

If you read along here during that period, you know I spent a good deal of time curled up in a recliner just waiting to emerge from the other end of the tunnel of shit. I wasn't even going out for a walk around the block.

Then through recovery I still felt pretty weak. It wasn't until April - eight months after treatment ended - that I felt strong enough to ride my bike to work again. I've slowly increased that since then and am now bike commuting almost every day.

But those ten months off the bike, plus the big weight loss during treatment, did a real number on my conditioning and strength. During my commutes this summer I have felt a lot weaker than in the past.

The main way to remedy that is to ride more miles.

My new employer makes several successful drugs for MS, and there is a company cycling team that participates in several Bike MS events in New England. That was the impetus and opportunity I needed. Last week I made a last-minute decision to ride the 60-mile route at the Bike MS: New Hampshire Seacoast Escape. I figured that since it followed the coast of Great Bay for the entire route it couldn't be too hilly.

I was a little nervous that I wouldn't make it. My commute is only 9 miles each way and I didn't know how much endurance I would have.

Well, the answer is: plenty.

I ended the ride with 62.5 miles on my bike computer. Not only did I have no problem completing the ride, but I felt fine afterward and had no soreness or fatigue. I remarked to Wonderful Wife later in the day that I felt less tired than I do on a normal Saturday afternoon!

The route was very picturesque. Some of it was on busy roads, but the portions on back roads were quiet and pleasant. From about mile 40-50 the route was along the sea shore near Rye Harbor State Park. That portion had beautiful smooth road, a nice shoulder, little traffic, a beautiful view of the ocean and even a tailwind. It reminded me of my favorite cycling experiences of the past.

It's very gratifying to be back on the road to cycling strength. The summer is the always the peak of conditioning, so my goal now is to maintain what I've got and, starting next spring, try to approach my past level of fitness.

Happy Anniversary!

One year ago today was my last radiation treatment.

I don't often reminisce about how I was feeling back then. Looking back at my blog post from a year ago today, I was not doing well. I'm glad that it's hard to remember!

How am I doing a year after treatment ended?

Very well, thank you.

The new job is going well, and we just returned from a delightful two-week vacation visiting family and friends back home.

Cancer-wise, things are pretty much the same.

Taste might be improving, but the change is so gradual it is unnoticeable. What I mainly notice is that I continue to have some taste sensation, albeit diminished, well into a meal. Previously my sense of taste would diminish quickly after the first few bites of each meal.

The main thing I still can't taste is sweetness; I can sense almost none.

I don't think saliva production has improved much, but perhaps a little. Recently I've had a couple of occasions where the available fluids were limited and I've managed to make it through a meal on a single beverage. It might just be because I chewed more.

The taste and saliva issues are perhaps a mixed curse (the opposite of a mixed blessing). It sucks that food has so little enjoyment for me but on the other hand I really like being 156 pounds!

As you will recall, my particular type of cancer, oropharyngeal squamous cell carcinoma caused by Human Papillomavirus Type 16, has a very high survival rate (above 80%). There are ongoing clinical trials to determine whether a less aggressive treatment regimen would still produce comparable survival. I received high dose cisplatin and seven weeks of radiation. The most directly applicable de-intensification trial, NCT01530997, has the following description:

The purpose of this research study is to learn about the effectiveness of using lower-intensity radiation and chemotherapy to treat human papillomavirus (HPV) associated low-risk oropharyngeal and/or unknown primary squamous cell carcinomas of the head and neck. The cure rate for this type of cancer is estimated to be high, > 90%. The standard treatment for this cancer is 7 weeks of radiation with 3 high doses of cisplatin. Sometimes surgery is performed afterwards. This standard regimen causes a lot of side effects and long term complications. This study is evaluating whether a lower dose of radiation and chemotherapy may provide a similar cure rate as the longer, more intensive standard regimen. Patients in this study will receive 1 less week of radiation and a lower weekly dose of chemotherapy followed by a limited surgical evaluation.

I've often wondered what decision I would have made had I been presented with the choice to participate in such a trial. The radiation damage that caused my taste and saliva issues is cumulative, so less radiation would be a good thing. The lower total chemotherapy dose may also have avoided the hearing loss I've experienced. But by participating I might also be decreasing the odds of a cure.

Hmmm.

If you had asked me a few months ago I probably would have opted not to participate. But now that I'm realizing the side effects are likely to be at least partially permanent I might give such a trial more consideration.

It's water under the bridge now. But if you happen to be a new patient with this type of cancer and you haven't started treatment yet, I encourage you to consider your options.

There are two additional trials that are testing other forms of treatment de-intensification in my cancer type: NCT01663259 is using a targeted therapy (cetuximab) in place of platinum chemotherapy; and NCT01088802 is reducing the total radiation dose while leaving the chemotherapy regimen the same.

While searching for those trials, I noticed there are also multiple trials of various mitigation strategies for the side effects of treatment, such as a mouth rinse that might make the mucous less thick and a clinical trial of MuGard, a product that claims to create a protective coating in the mouth and prevent or mitigate mucositis. Those trials might help future patients have an easier go of it. Less mucositis would cause less mouth pain, which in turn would lead to reduced opoid use, which in turn would alleviate the opoid-induced constipation that was my worst side effect.

But back to the topic at hand. I'm very glad to be a year out and doing fine.

Happy Anniversary to me!