Dateline: Albany Medical Center Imaging Center
One of the hard parts of this is how little certainty there is, at all levels big and small. The most obvious uncertainty is about how many more years I get and how I will get to live them. Then there’s the more immediate: after a consultation with Judy Garber at Dana-Farber on Tuesday, and a long meeting with my oncologist at Albany Medical Center/NY Oncology Hematology on Wednesday, we still don’t know which treatment I’m going to be starting.
This is because I am going to do a clinical trial in which all subjects are randomized to one of two “arms.” 2 out of 3 subjects get the experimental arm with the drug BMN 673, a PARP inhibitor (see the study description if you like). 1 out of 3 get the control arm, with standard treatment. In this trial, standard treatment can be any of 4 chemo drugs, based on the oncologist’s and patient’s choice and how far along the patient is in her treatment story. I am signing up for the trial and hoping I get the PARP inhibitor because that’s what everyone thinks has the best chance of working for longest. Also, it’s pills–not IV–which would be nice. But I won’t know until I get randomized which arm I am in. (This trial is “open-label” so you do know which treatment you get.)
More about PARP inhibitors over there–>.
And just to make things more complicated, one of the four standard-treatment drugs is one that my oncologist would really be happy to give me–another one that seems to work well for BRCA1 disease–and we thought that since it was listed in the trial he would be able to give it to me even though it is not approved for “first-line” treatment of metastatic disease. This just means it’s approved for use after someone has been on a couple other chemo treatments, not as a first treatment. And this is how most newer drugs start out being approved–for later stages. Then if they seem to work well, they are promoted up the line (via clinical trials testing them) until they are used for anyone at any stage. Or maybe some are shown to have side effects that limit them to later stages of disease. Anyway, this drug, Eribulin, would be a great second choice for me, but it is unlikely that my insurance will pay for it to be used earlier than it is approved for. So Dr. Collea & his billing people are finding out whether the insurance will pay or not. If not, I could pay for it myself but it is wicked expensive. Or I could try a more standard treatment (Zeloda aka capecitabine), which is an oral medication too.
So right now I don’t know lots of things:
- whether the disease has progressed and/or how much (to be determined maybe via today’s scans, though maybe they are apples-to-oranges compared to the previous scans)
- whether I am going to get the suspected best drug or not for me right now
- whether I am going to be taking an oral medication or an IV medication delivered on days 1 and 8 of a 21-day cycle
- of course, whether whatever I get will work
- what I will end up taking if the first thing doesn’t work (a decision that is made only 6 weeks or so after I start)
- how long I will feel totally healthy
So that’s the bigger scale. On the smaller scale, I have to learn to roll with change too. I came to Albany Med this morning at 9:30 to get injected with radioactive “dye” for a bone scan. It takes 4 hours for the uptake into the bones to happen. I have to have a CT scan too today, and though the schedule people tried to get the CT scan scheduled for sometime in those 4 hours, they couldn’t, so my bone scan is at 2 and my CT scan was at 3:40. But when I got the dye injected, the nuclear medicine people called the CT scan department to see if I was not supposed to eat between now and then, and instead of a yes/no answer they said they would just do the CT scan before the bone scan.
I had sweetened the all-day-at-Albany-Med deal by planning a walk to my friend Dorian’s house for lunch during these 4 hours, thus getting exercise and friend-seeing into my day. Also I was going to meet with the oncology trials nurse, Joanna, to do my health history and sign the consent forms for the trial. Instead (roll with it) I am sitting in the waiting room having drunk the “berry smoothie” (berry…barium…how cute) for the CT scan. You have to wait an hour after drinking it.
Medium scale: I had to cancel today’s work plans when these tests got scheduled yesterday. Roll roll roll.
I am lucky to be at a place that can do things like CT scans and bone scans with only a day or two’s notice. And they have free wireless…now if all the TVs in all the waiting rooms would break, I would be all set.
Dana-Farber was so elegant and fancy, they would NEVER have TVs in the waiting rooms…I think they might have a clue that TV, especially non-consensual TV, is not an element of a healthful environment. But D-F is 2.5 hours away in good weather at high speed on the Mass Turnpike. And as we found out on Tuesday evening, it is crazy in the snow and it can take 4.5 hours to get home…it was an epic journey.