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The Preston Robert Tisch Brain Tumor Center at Duke

Family Scrapbook |Brian Sereno—A New Patient Perspective

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"Decision day is upon me, and yes—a decision was finally made.  It has been exactly four weeks since I was taken to the emergency room on November 4th—a relatively short time all things considered—but what certainly felt like an eternity to me and my family.  It was an exhausting process.

I enrolled in an experimental protocol at Duke today, perhaps even surprising myself with the decision.  To be honest, I left Duke yesterday strongly suspecting that it wasn’t the place for me. What’s interesting though, is that one of the drugs that Duke champions like few others—Avastin— appealed to me strongly despite the warnings of serious side effects.  My thinking was that if it has been FDA-approved for other types of cancer, and Duke (self-described ‘renegades’ in the field) felt that it might also have efficacy for newly diagnosed GBM patients like myself, it might be worth trying. I admired Duke’s belief that you have to treat this ugly disease as beatable, and secretly liked the fact that they chastised much of the rest of the medical community for not joining them in that belief. What held me up though was their inclusion of the drug Irinotecan in the study and my belief that I could essentially mimic Duke’s Avastin study on my own, skipping the Irinotecan component that I was leery of.

Yesterday’s meeting was interesting and informative to be sure, but had the appointment been a one-day meeting rather than a two-day consultation, I’m sure I wouldn’t have reached the same decision. However, when we entered the Preston Robert Tisch Brain Tumor Center this morning, things started to change. First we met with a nurse that was in charge of enrolling patients in the particular protocol that they were recommending for me. Although she basically read word for word from the 14-page packet that I was given last night—as I struggled to stifle my yawns—I was nonetheless intrigued by the fact that she was taking the time to re-read to me something that I was explicitly told to read through the night before. She also painstakingly fielded every one of our skeptical questions, and generally made us feel both welcome and wanted. If they took this kind of care with a simple permission slip, what kind of care would they give me as I take on cancer?

When the nurse finished her spiel, though I was far from convinced, I was at least intrigued.  She told us then that a social worker was on her way in to speak with us next, a fact that surely led me to roll my eyes on the inside. I can only hope that I didn’t do so outwardly as well. I was imagining that the social worker would try to hug and coddle me, asking me silly questions like ‘have you ever felt like you wanted to hurt yourself?’ and ‘do you ever wonder why me?’ The truth is that I don’t need a social worker—or so I thought. I know how this is going to sound, but I love myself.  I really do—and I can’t apologize for that fact. The last thing I want to do is hurt myself, and no I don’t wonder ‘why me?’ Wondering that now would mean that I would have had to wonder that prior to all of this as well, when I wouldn’t have traded places with anyone in the world. I didn’t wonder then, and I won’t do so now. I just accepted then that I was both blessed and lucky, and can accept now that there is no answer to that question. Anyway, I didn’t need someone to cheer me up, I don’t have any domestic issues, and we’re currently kid-free—so why would I need a social worker? Well, the social worker turned out to be so much more…offering advice on work and disability (though I’m sure that I want to return to work soon), sleep, food and fun (calling me ‘Mr. Pleasure’), and managing my great support group that is trying to ‘cure cancer with casseroles’, or in my case with Edible Arrangements.

I also met with the woman who would be my assigned nurse—Martha—a spirited woman that I had a hard time understanding at first, though I quickly identified with her quirky way of doing things. Between the protocol nurse, the social worker, and my assigned nurse, I couldn’t help but think that I’d be in good hands at Duke—if it just weren’t for that damn Irinotecan.

I still was debating with myself. Should I mimic Duke’s protocol on my own, following their study to perfection except for the one drug that worried me? Or do I bite the bullet and sign the consent form, getting a social worker, bevy of nurses, top-notch doctors and personal care, albeit with a drug that I won’t have to take until eight weeks from now anyway, and really isn’t so ‘nasty’ when put in perspective in the grand scheme of things. Yes, I’m sure that the ‘watery stool’ that was listed as a side effect wasn’t a reference to the seats at the pool-side swim-up bar in Cabo where we just honeymooned, but if this study could save my life, couldn’t I tolerate a few unpleasant side effects?

What sealed the deal however was the doctor in charge of the protocol, a man that introduced himself simply as Jim, and didn’t have a speck of arrogance about him. He told us quite candidly that his priority is his patients and not his study, and that he wanted to see me enroll in the protocol because it was the best thing for me to do, not the best thing for him, for Duke or for any of the drug company interests that we had been warned of.

It came down to this…am I better off trying to replicate a study on my own, doing my best to either call the shots or have the shots called in a specific fashion by a team that I’d have to assemble, or should I rely on an existing team that is among the very best in the world to administer a protocol that has already returned some extremely promising results, though I’d have to ‘stomach’ some unpleasantness at the time? Had I not been told time and time again that I am entirely free to withdraw from the study at any time and for any reason, this might have been a difficult question for me. However, with the assurances of the entire Duke team—particularly Dr. Jim himself who was the most supportive of the bunch—that I could drop out of the study at the minute that I felt uncomfortable with it or the results, my decision was made.

Signing the consent form made me feel like a prized recruit who just made his big decision on where to go to college. Like that recruit though, transferring is always an option. I don’t want to transfer, and at this time, there is not a doubt in my mind that I made the right decision for me at this time—but it is comforting to remind myself that nothing is forever. In the meantime, after spending three drawn out weeks reading everything that the internet had to offer, I can rest comfortably tonight knowing that I’ve done what’s best for me right now.

Everybody should be so secure."


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Hopeful Resources

 

 

Maintaining hope is not always easy. In times of crisis, you may need extra support and encouragement from your family, your health care team, and other survivors of brain tumors. Here are some resources that may help you maintain a positive outlook.