The Hoops

I had to request all my records from the last five years, some by FAX (yes, fax) and some by CD, be sent to the Mayo Clinic in Rochester. Then they asked that I get a scan as it had to be done within two weeks of the consult. I actually saw this as a good sign– I’d made it through the first screening and now, maybe, all they needed to know was whether the cancer was progressing too quickly for me to be in the study (instead sending me back for more chemo). I knew, or hoped, from my lack of symptoms the cancer was not spreading too quickly. This was, of course, projection.

They wanted me to come to the Mayo Clinic, 250 miles away, and have the scan (out of network, costing me $1,000s) this morning. Then I’d have an appointment/consult with the doctor in the afternoon. Beforehand he would look at my pathology (more cost to me). I insisted that I wanted to have the scan done at home in network and that I wanted a virtual/zoom appointment. The woman on the phone was surprised by my request, but she made it work. I made sure the CT scan got to them and did all my questionnaires on the online portal and practiced with the zoom link and was in place and ready early to click in.

The doctor went through my treatment history with me then asked what was next for treatment. “Well,” I said, “the reason I’m here is because I want into that measles trial.” This was news to him. It had been the entire subject of my initial contact/email to him, but it seemed I needed to get fully in the system before an answer could be formulated. The answer was immediate. “You’re not eligible for that trial, because you have cancer in your lung and this is for cancer that is only in the abdomen.” Well that was my whole question! We could have established this in two sentences in an email!

HOWEVER…. he did have news of another upcoming study, a combination virus/immunotherapy study, that I probably would be a good candidate for. The parameters of the trial aren’t written yet, but the concept wouldn’t exclude me. The study agent has been approved by the FDA and the company is negotiating budgets with Mayo now, which could take three months or more. As long as my cancer is still stable, I could qualify. We talked it through. And because my cancer is stable now, I can wait and have another scan in two months and see if it’s available then.

So now I’m in the system, and from here I think I can contact the oncologist via message (I’m officially a “patient” now with a portal and a patient number and access to the records and messaging system, etc.) and he can let me know the status of the trial and more information related to my qualifications.

Also, it does feel like we’re in a new stage. It feels like maybe these trials, these new agents and therapies, are coming one after the other, more quickly into the pipeline. (Is this a result of the “cancer moonshot” Obama and Biden launched five years or more ago?) It feels like there might be something other than chemo coming my way the next time around. And to be honest, I’m not that sad I won’t be getting an abdominal port, which sounds kinda unpleasant.