Starting and Changing Clinical Drug Trials

July 5, 2012

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

Enrolling in a trial isn’t a decision to be taken lightly. And like any other treatment option, it is something you need to discuss thoroughly with your healthcare team, your 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. And of course, 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 bloodwork. 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.

It is 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 they 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. And 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 regiment. After the test this month, I’ll start on the new drug right away. And 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. And it’s not to 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.

And 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.

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11 Responses to “Starting and Changing Clinical Drug Trials”


  1. Thank you for sharing your sarcoma journey. In doing so, you may help others affected by the disease and help to bring a greater awareness of their needs to others who are fortunate not to share our experience. If ever there is anything we can do to assist you or your family in your journey, please let us know. We have committed our lives to advancing this cause.
    Onward and upward,
    Missy Bellinger
    Amschwand Sarcoma Cancer Foundation

    • Mike Snyder Says:

      Hi Missy,

      Thanks for the encouragement. I’m hoping that sharing my experiences makes it easier for someone else. And if it helps them find treatment options that work, that’s icing on the cake!

      I’ll keep you posted on my progress.

      Take care,
      Mike Snyder


  2. I don’t understand this part. “Cutting out one malignant tumor agitates the many benign tumors close by and they become malignant.” Are you saying that more than one of your benign bone tumors also morphed into chondrosarcoma? And please, if you will, give more information about the name or number of the new trial you will be participating in. I know some people with chondrosarcoma who have metastasis in the lungs whose time is short. If they could get on this new trial, there might be hope for them.

    • Mike Snyder Says:

      Hi Elizabeth,

      My original bone disease, multiple enchondromatosis, scatters tumors throughout my skeletal system. It’s those individual tumors that are actually benign chondrosarcoma tumors. Over the years, various doctors have said I have hundreds or thousands of these tumors scattered throughout my system.

      When one of the tumors becomes malignant, it does so in the form of chondrosarcoma. And when my doctors have removed the malignant tumor, the trauma seems to agitate the benign tumors nearby. That is what makes surgery impractical; they can’t remove one without stirring up others.

      I hope that clears it up a little. If not, let me know and we can talk more.

      Take care,
      Mike Snyder


      • Mike, I have the same underlying condition as you do. As do many other members of my family. I had chondrosarcoma in the pelvis with seven recurrences over eleven years. Removing a chondrosarcoma tumor and aggravating the benign ones was never an issue according to my sarcoma specialists. I wonder who told you that? I would like to know more about it. I’m really concerned now that I have been given the wrong information, and now need to have all my other bone tumors checked out more seriously. Thanks for sharing your information! Can you tell me the name or number of the trial please?

      • Mike Snyder Says:

        Elizabeth,
        As I’m sure you know, our type of cancer is rather rare. Well I’m one of the rare ones within the chondrosarcoma community that surgery doesn’t work for. I’m maybe one out a hundred in that predicament. If surgery has worked for you in the past, I’m sure you’re still fine. Don’t hesitate to ask your doctors if you’re not sure.

        In terms of the trial I’m starting, go to clinicaltrials.gov and type in NCT01330966. The drug is called Pazopanib. It’s over-the-counter name is Votrient. It’s already approved for renal cell carcinoma and soft tissue sarcoma. And now they’re trying it for chondrosarcoma.

        MD Anderson has some other trials in the pipeline for chondrosarcoma as well, so I’m very optimistic about finding something that works. I will keep you posted.

        Mike


  3. Yes, I know how rare chondrosarcoma is, including the rare sub types. From the way I understand it, when surgery doesn’t work it means the chondrosarcoma has metastasized, usually to the lungs. I’m familiar with Votrient. I hope it will work for you better than the hedgehog inhibitor trial did. I’m permanently on a different chemo drug now for my leukemia. Not related to CS, just a coincidence, I’m told. I’m looking forward to following your journey and subsequent victory!

  4. Dennis Wish Says:

    My son has chondrosarcoma. The disease has progressed to the point where it has affected his breathing and lesions are appearing on his skin. can he qualify for this trial re Votrient?

    • Mike Snyder Says:

      Hi Dennis,

      I can’t say specifically. Go to the following website: http://clinicaltrials.gov/ct2/show/NCT01330966?term=Chondrosarcoma&recr=Open&rank=2&flds=Xabf and contact one of the trial sites close to you.

      I’m at MD Anderson and can tell you they are fantastic to work with. Personally, I’ve had very little in the way of side-effects; just high blood pressure. But call as soon as you can.

      If you need some specific info, feel free to write again with your contact info. I’m happy to share any info I have; including who I’m working with. Good luck to you and your son!

      Mike Snyder

      • Mike Snyder Says:

        Hi Dennis,

        MD Anderson is a hospital in Houston, Texas; probably the best one in the world for cancer. Pazopanib trials are also being held at hospitals in Los Angeles, California; Chicago, Illinois; and Philadelphia, Pennsylvania.

        The process for getting on the trial will vary somewhat based on your insurance. Since the area code you had listed Alberta, I’m presuming you’re in Canada. But I don’t think that will be a problem as far as getting on a trial is concerned.

        Look for the hospital contact info below:
        Please refer to this study by its ClinicalTrials.gov identifier: NCT01330966

        Contacts
        Contact: Amanda Epperson, RN, CCRC 901-435-5558 aepperson@acorncro.com

        Locations
        United States, California
        City of Hope Recruiting
        Duarte, California, United States, 91010
        Principal Investigator: Warren Chow, MD

        United States, Illinois
        Edward Cancer Center Recruiting
        Naperville, Illinois, United States, 60540
        Contact: Kathy Seymour 630-646-6072 kseymour@edward.org
        Principal Investigator: Samir Undevia, MD

        United States, Pennsylvania
        Pennsylvania Oncology Hematology Associates Recruiting
        Philadelphia, Pennsylvania, United States, 19106
        Principal Investigator: Arthur Staddon, MD

        United States, Texas
        MD Anderson Recruiting
        Houston, Texas, United States, 77030
        Principal Investigator: Dejka M. Araujo, MD

        Sponsors and Collaborators
        ACORN Research, LLC
        GlaxoSmithKline
        Investigators
        Study Chair: Arthur Staddon, MD Pennsylvania Oncology Hematology Associates
        Study Chair: Warren Chow, MD Beckman Research Institute

        If you’d like, I can ask my research nurse to email you with some more specifics. And rather than reply through the blog site, email me directly; that way the discussion is private.

        Let me know what you think. Talk to you soon.

        Mike Snyder

      • Dennis Wish Says:

        yes, Please have your nurse e-mail me with more information.
        Thank you for keeping this discussion private.
        Dennis


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