Day 100 – LED top hat

Day 100!!! Oh my goodness, I made it! Today I celebrated with a fancy top ‪#‎hatONit‬ with fancy LED lights (made by Jake’s roomie). Check out the first #hatONit video to see the lights changing.


Today I had an appointment at Massachusetts General Hospital (MGH) to discuss my clinical trial options. Because my cancer progressed on the chemotherapy I was receiving, it’s time for a new treatment. There are more “standard” treatments available, but the drugs in clinical trials are more specific to my cancer and their side effects are likely to be more tolerable. I am fortunate that there are a lot of drugs in trials locally for estrogen-receptor positive breast cancer and/or for BRCA mutations.

To tell you about the clinical trial we’re looking at, and why it looks good, I want to give some background on the complicated world of clinical trials, and the mental chess game an oncologist plays when recommending one to a patient. First off, trials come in Phases I-IV. Phase I tests safety, dosage, and side effects. In a Phase I trial, you could receive a drug on its first test in humans. Phase II expands the trial to a larger group and evaluates efficacy and safety. Phase III tests effectiveness, side effects, and compares to commonly used treatments. Phase III trials are typically divided into a control group and a treatment group, so if you join them, you may receive the standard of care (e.g. the next chemo on the list) rather than the experimental drugs. Phase IV is evaluation of the drug after it’s been approved. So there’s a trade off, in Phase I and II you receive less well tested drugs, but definitely receive the experimental treatment. In Phase III, the experimental treatment is better tested, but you may not receive it.

Additionally, the oncologist considers whether a trial (or a treatment outside of a trial) might exclude you from a promising trial down the line. This is particularly critical for metastatic cancer patients, who move to a new treatment each time their cancer progresses. For example, I received the drug palbociclib last year and my cancer progressed on it in December. I may be excluded from trials that are testing palbociclib in combination with other drugs. The oncologist makes an educated guess about what the exclusion criteria will be for other promising treatments that are in trials or will soon be in trials.

Finally, trials open and close all the time. In December when my cancer progressed last, there was a trial at MGH that would have been a good match for my BRCA2 mutation. At that time, my liver was in a bad state, so rather than joining that trial, we hit it with the big established chemotherapy guns. That trial has long since closed.

So! The trial we’re looking at is in Phase II, so I’ll definitely receive the drug, and 300 patients have already been given the drug, so a lot is known about its side effects and safety. The drug, IMMU-132, consists of an antibody attached to the active metabolite of an established chemo therapy agent. The antibody targets receptors (TROP-2) that are overexpressed in cancer cells and brings the chemotherapy directly to them. The drug looks particularly promising for triple-negative breast cancer*, where it’s received Breakthrough Therapy and FastTrack designation, meaning that it’s particularly promising and the FDA will speed its approval. My cancer isn’t triple-negative, but cancers with BRCA mutations can act similarly to triple-negative cancer and also respond well to chemos that mess with DNA, which this one does. Finally, this trial is unlikely to exclude me from any future trials, because it’s very different from the other categories of promising treatments.

* which is more aggressive and has fewer treatment options

Yeah, so, I’m feeling pretty good about this trial and will most likely set up an appointment to join it next week. I have breathing room to wait a week or two because the cancer progression on my scan wasn’t that bad. And I need all the time to finish my dissertation.

Which brings me back to, it’s Day 100! Thank you all so much for joining me in this crazy fundraising experience!!! Though I’ve hit 100 hats, it’s not over yet… Voting for the best hat will start next week!
Up to $22,923 and 222 donations! Wow!!!

Donate here:


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