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Clinical trials give treatment options for rare cancer patients

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By Mike Snyder

120730Mike.JPGThe reasons for enrolling in a clinical drug trial are undoubtedly as varied as the patients themselves.  

For me, the reason is simple: I have a rare type of bone cancer called chondrosarcoma and surgery -- the usual treatment for someone like me -- is no longer a viable option.  

Cutting out one malignant tumor agitates the many benign tumors close by and they become malignant. Chemo and radiation aren't treatment options either, since neither one is effective in stopping or even slowing down my cancer.    

When I first visited MD Anderson last year for an evaluation about treatment options, participating in clinical drug trials were among the first things my doctors and I discussed.

A helpful guide
Enrolling in a trial isn't a decision to be taken lightly. Like any other treatment option, it's something you need to discuss thoroughly with your health care team, family and friends, and anyone who is a part of your care and support system.  

MD Anderson offers a handy guide listing the questions you should ask and treatment factors you should consider. Speaking as someone who has "been there, done that" I highly recommend reading this guide.

The process for enrolling in a trial is somewhat like a job interview. Your background, or in this case your medical history, type of cancer and previous treatments are all taken into consideration.  

The likelihood that the clinical trial will help you is evaluated, along with whether or not you're healthy enough to participate. Approval from your insurance company is also needed.

Once you've been approved for the clinical trial, you'll receive an initial set of MRI and CT scans, along with X-rays and blood work. These tests will become the baseline for the trial. All subsequent scans will be compared with the first set to evaluate the drug's effectiveness.  

How often you return to MD Anderson for scans and drug refills will depend on the protocol or conditions specified by the drug company conducting the trial.  

The clinical nurse on your trial will quickly become your new best friend and will be able to answer many of your questions about what you can expect in terms of reactions to and side effects from the trial drug.

Change can be good
It's likely that you will change to a different drug trial at some point. The drug may not be effective or the side effects from the drug may be too much for your system to handle.  

In my case, the drug company conducting the trial suspended it when it determined there wasn't any difference in response between people who were on the placebo and those who were on the actual drug. This news was doubly frustrating for me since I'd been on the placebo for the first four months and then switched to the actual drug for the next five months.

At first, all the fears that every cancer patient knows about came rushing back, ready to sit beside me and feed on my anxiety and uncertainty. Then it dawned on me: there wasn't any reason to continue taking medicine that wasn't helping me. There were other clinical trials out there that I could qualify for.  

This trial wasn't the only one and it didn't represent my only chance against cancer. All I needed to do was change clinical drug trials. So I did. And that sent the fears away.

The set of scans and X-rays this month will be my baseline for the new trial. I've already spoken with the clinical nurse about the new protocol and treatment regimen.  

New tools

After the test this month, I'll start on the new drug right away. If this drug doesn't work, there are other trials coming up. Think about it. If you're working on something and the tool you need wears out, you don't stop working. You get a replacement and keep going.  

That's what a new clinical trial represents: a new tool so you can keep on working; so you can keep fighting the cancer; so you can keep living.  

The idea isn't to turn you into a guinea pig or a medical experiment, or make your ordeal worse by adding nasty side effects or foregoing your pain medications. It's to give you another treatment option to consider when deciding what course of treatment will work best for you.

Isn't that why we're here -- to have the best options available for treating our cancer and taking our life back? Speaking for myself, it's an option I'm glad to have. Maybe it's an option for you.

Read more about Mike Snyder on his blog https://mfsnyder.wordpress.com/.

Read more Cancerwise posts by Mike Snyder.

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