Brain Dump

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Today we drove up to Johns Hopkins to get a second opinion on the next steps in treatment.  While Dave’s oncologist here has been encouraging exhausting the standard lines of treatment before doing the drug trials, today’s doctor was saying the opposite.  Basically she thinks that the remaining options aren’t that great.  In her opinion, with Erbitux/Vectibix the bad outweighs the good.  The side effects including the awful rash aren’t worth suffering with when the efficacy of the drugs isn’t especially high.  The fourth line drug, Regorafenib, is not going to shrink any tumors.  The best you can hope for is stable disease which is NOT nothing.  Stable disease would be excellent.  In the end though she said in trials it added about a month or two to your life expectancy.  So, she did not paint an optimistic picture for the remaining standard treatments but you also have to keep in mind that she is working at a research facility and is leading one of the drug trials that she was recommending.

There are two drug trials available.  The first one (a phase 2 trial – Phase II: The drug or treatment is given to a larger group of people to see if it is effective and to further evaluate its safety) is not really a good option.  It is aimed at patients with “microsatellite instability”.  Since Dave is microsatellite stable, he is not precluded from the trial but so far it has only shown to be beneficial in the unstable group.  The second available trial, and the one Dr. A is heading up, is a phase 1 trial (Phase I: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.) If enrolled, Dave would be the sixth person to join the study.  This trial involves being injected with the drug SGI-110 for five days.  Then on days 8 & 15 Dave would get irinotecan which is an FDA approved colon cancer drug that he has had before.  While the idea of a Phase 1 study is not overly appealing to me, I do like that it is combined with a standard drug.

So, now we (Dave) need to decide which path to follow.  We talked out both approaches and tried to brainstorm pros and cons to both.  The biggest reason to do the drug trial now is because Dave is healthy.  Dr. A mentioned that oftentimes patients come to Hopkins after they have exhausted all of their options, but they are too sick at that point to join a trial.  The second compelling reason is that Dave can always go back to the standard lines if the drug trial doesn’t work.  My reservation against going straight to the drug trial is time.  By the time he goes through the insurance approval, screening and then does two months of the drug and has a scan, three to four months could have elapsed.  If the trial drug doesn’t do anything, then there is the possibility that the cancer would have had time to mutate more and grow.  Then you are trying to get back ahead of it.

Dave had an email exchange with his oncologist here tonight, and he is supportive of either treatment path.  His parents are supportive and lean towards the trial as the better option.  He will sleep on it tonight and likely call Dr. A in the morning and let her know that he is interested in joining her study.  And I am okay with it too.  I feel like we really hashed it out and like most of the decisions thus far, there seems to be a clear course of action.  Now we have to see if our insurance company supports the decision too.

xoxo

Robyn

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