Friday, August 8, 2014

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.


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!

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