There was a primary tumor that started it all; pushing out cancerous hormones. (Maybe not technically cancerous hormones, but cancer-causing hormones?) Even though it is the source of all the other cancerous tumors, treating the whole system, all of the tumors, is necessary, because now they all are working together.

The tumors can be either well-differentiated or poorly-differentiated. Up until recently, the distinction was not made by the doctors or the researchers – they simply didn’t note it (or maybe they didn't have the tools to tell the difference). They have since learned that there are two types, and they function vastly differently.

Well-differentiated tumors put out more hormones, which increase the proliferation rate of the cancer – but more importantly, how quickly the cancer develops a tolerance to the treatment.  Poorly-differentiated tumors function less predictably, but operate more aggressively.

Shelli has well-differentiated tumors, in the range of, “innumerable”.

The question this trial is trying to answer is: Can a lower beta-emitter stay attached to the cancerous tumors longer, causing damage to the cancer without it developing as quick of a tolerance?

One of the things that sets NETs apart, is that once they recognize an attack, they adapt quickly. If we hit it hard and fast, it takes over all that much faster.  But if we don’t try to stop it, though, it has free reign to do what it wants. We are trying to fly under its radar.

Dotatate is radiation that has been approved as a second-line of treatment, following chemotherapy (well, third if you count the Sandostatin shot as treatment). Dotatate targets the protein on the NeuroEndocrine Tumors, radiating only them while leaving the rest of the body alone. It does not kill or remove the cancer – the best case scenario is that it stops the growth of the cancer for a time-period. Eventually, the cancer develops a tolerance to that type of radiation, and any further infusions are without benefit. Four infusions, with each one being eight-week’s apart, is the protocol.

Dotatoc is not yet approved as treatment, but it is still a radiation that targets the protein on the NETs. Being a lower beta-emitter, the hope is that the cancer doesn’t notice a threat, and therefore the radiation can stay on the NETs longer, providing greater benefit. Dotatoc allows for up to six infusions.

The next step for Shelli has not yet been determined. But we have been told that there are 4-5 other known approaches that we have available to us now, from the Dotatate radiation to various forms of chemo.  And who knows what might develop along the way, as there are other NET studies going on now in Europe that are trying to answer other questions.

There are now some trustworthy places online!  In the order that I was most recently on these pages:  American Society of Clinical Oncology, first.  Ronny Allen's page, second.  And those with a podcast, LACNETS, third.  There is also the Neuroendocrine Tumor Research Foundation, of which Shelli's doctor is the current president.  I think we have grown in our capacity to take in information, at this point.

Even with the ignorance that Google spreads, we are happy to ask the NET Department in Mayo all the questions, and they have been more than able to explain the updates and research development that has been occurring. Hopefully, I answered some of those questions here. As you have more, feel free to ask Shelli or me. If we can’t answer directly, we’ll ask the experts and get back to you.