Two weeks ago
Sue was at Hopkins for a checkup following the dangerous drug interaction where she had to stop taking most medications including the cancer drug. Everything was looking good with the numbers and Sue was feeling much, much better. In addition to the checkup was the regularly scheduled brain MRI. Not wanting to hang around and not expecting quick results, we powered out of there.
It was a couple of hours later at home, when we got the call from Sue’s doctor. The MRI showed that there was something there at the same spot as the previous brain tumor from three years ago. About the worst news possible.
We hoped that this was just some anomalous reading due to the body wide edema (swelling from fluids) caused by the drug interaction. The doctor said to immediately restart the leukemia drug and that we would see what happens in two weeks with another MRI.
It was the high holidays and Sue’s folks were in town now. And with the scary and somber news, we tried to just get through it. And smack dab in the middle of the two weeks was Sue’s birthday. We all went out to a lovely dinner and enjoyed the time together. Yet we knew this was not celebratory, but a time to be with our family and hope.
The MRI rescan was scheduled for erev Yom Kippur (night of). We packed for either possibility, a few days inpatient at Hopkins to receive heavy chemotherapy or a drive home to be with Sue’s folks.
Everything seems to take longer when waiting. Dread and fear fighting hope. Sue took it in stride, the blood test and the trip to the MRI room where her first brain tumor was detected three years ago. On the way back to see Sue’s doctor, we saw him in the hall. He asked if we were done and then left us to go to the MRI lab to check immediately. We assume he too had made potential arrangements for inpatient care.
In an other worldly atmosphere in the lobby of the Hopkins Cancer Center, someone was playing the Four Seasons and similar music on the grand piano, while we waited. It was only about thirty minutes till the doctor approached.
It’s gone.
Sue’s doctor told us that the radiology folks were flummoxed by the results. The radiologists did not know what they were looking at. The MRI scan from just two weeks ago showed the tell tale signs of a brain tumor. Yet this scan barely showed anything. It made no sense to them. This does not happen.
However, Sue may be the only patient in the world with this peculiar situation where the drug for ALL Philly positive gets through to the brain in order to beat back the cancer. Most other folks just need it to maintain good health for ALL Ph+ or CML with the TKI class of drugs without need for it in their CNS, aka brain.
It was probably the month off the drug that allowed the cancer to come back. And we did not know if it was still there after three years. Unfortunately and despite the good news, it is clear that Sue needs to stay on the drug and avoid any more drug interactions. (Initially Sue had a drug interaction with Zyrtec and that took awhile to tease out in order to even stay on the drug which was only experimental at that point).
Two weeks of worry. Two weeks of keeping quiet and just hoping. We are very thankful for Sue’s amazing doctor and this wonder drug, Iclusig/ponatinib.