When I started on REGONIVO at the beginning of August, I knew that Stivarga (the REGO in REGONIVO because the generic name of the drug is Regorafenib) was a brutal drug. But the brutality I knew about involved blisters on hands and feet and a throat so raw you don't want to swallow. I didn't pay attention to anything else on the side effects list until it was too late, and the fatigue and loss of appetite had overtaken me. For me the weight loss started immediately, and it didn't take a scale for me to know it. I could feel it in my clothes and see it in my ass. I could see it in the faces o ..read more

Unless you are a patient or caregiver starting or considering REGONIVO in the future, there is no need to read this post. This is what my experience has been on this combination for the last 3 months, and would only be of interest to those pursuing or considering REGONIVO. Schedule I am infused 1x a month with Opdivo. This does not follow study protocol, and when my oncologist told me it would be a monthly infusion, I immediately questioned it and was concerned it may impact the outcome. He sent me research information on revised Opdivo infusion protocol, which calmed me down and made me tr ..read more

Amazing if not miraculous news. The new drug combination I’ve been on for the last 3 months is working, and as my oncologist said when revealing my scan results today, “I think we’ll really be celebrating in 3 months. This is just getting warmed up.” I was pretty hopeful going in today, and comforted by the first 8 weeks of tumor marker blood tests (CEA). They dropped significantly at the 4-week and 6-week mark, and are a good indicator for me about what's going on inside the ol' lungs.12 weeks later we have the visual proof to back it up with great CT scan results. Graph of CEA test results o ..read more

In June an abstract was presented at ASCO from a phase 1 study out of Japan. It combined 2 drugs currently being used in cancer treatment in the US, and the results of the study were promising - promising enough to get the serious attention of GI oncologists and patients. Serious enough that I took screenshots of the presentation slides I saw come across Twitter from those in the Twitterverse that were in attendance.  The study treated gastric and colorectal cancer patients with microsatellite (MSS) tumors with a combination of Nivolumab and Regorafenib. Regorafenib, or Strivarga as it’s k ..read more

I finally pulled the trigger on a trial, and I will admit it wasn't easy. It was very easy for me to say yes (to that clinical trial dress), but what wasn't easy was finding a trial in a timely manner - or at least timely enough to keep my anxiety from creeping in to every corner of my life. To say it was a weird few months is an understatement, and my head space was clouded over in ways I've never experienced. I found myself withdrawing from the world - not because I was in a depressed state, but because I didn't have an ounce of anything to give as long as my mind was consumed with the real ..read more

By treating the patient as a whole, we ensure the common gaps in care do not get overlooked and the burden of cancer is reduced. I was on the phone with a colon cancer patient who was looking for help and guidance. She had grown frustrated with her oncology team, and gradually explained the long list of complaints and opportunities where they had let her down. After validating many of her concerns, I told her, "It sounds to me like you are looking for palliative care, and they just aren't offering it." In my world, palliative care is a term thrown around as frequently as my rounds of treatmen ..read more