I spoke with my trial doctor on Monday. It didn’t take long to get a call-back once I told the nurse practitioner I was thinking about withdrawing from the trial.
As a next course of action the doctor wanted me to try taking a steroid (prednisone) along with LDK 378 to see if it reduces the intensity of my side effects. I don’t see how prednisone would help, and she has only tried it on one patient to help with nausea, not pain. Considering what prednisone does to me, I’m going to need more than an uneducated guess before I give it a try.
It was clear during our entire nine minute conversation that she would say whatever she could to keep me in the trial. This included reminding me how any treatment can have side effects (true) and how I cannot come back into the trial once I leave (also true). She told me there was one other trial and some chemo options with a 6% response rate. If those didn’t work, I’m essentially at the end of the road. Although I appreciate a candid approach, her message seemed to be a purposeful one of doom and gloom.
When she revisited the prednisone option, I once again voiced my concern that there is no other patient using it for the control of abdominal pain. She mentioned how the primary study site (Massachusetts General Hospital) has several people trying prednisone, although she wasn’t sure which side effects they had.
I am familiar with Dr. Alice Shaw through medical journals, websites, and my peers. It is common knowledge that she is one of, if not the top investigator in this field, in the world. When my trial doctor cracked the door, I burst through it.
“Please don’t take this the wrong way,” I said, “but I would like to speak with her.”
Silence. And then “Sure, I understand.”
After another small pause, I asked “Could you facilitate that for me?”
“Um, sure. I think I already have her contact information here somewhere. I’ll have someone call you with it.”
I expressed my gratitude, recapped my next steps (speak with my oncologist, call Dr. Shaw), and hung up the phone.
I replayed our conversation in my head, and my heart sunk. I know my time is limited, but it’s not every day that the fact is shoved in your face.
About one hour later the nurse practitioner on my trial called with the contact numbers for Massachusetts General Hospital Cancer Center (MGH). I called, and after being transferred only once, I spoke with Karen, the thoracic nurse coordinator.
In the next six minutes I introduced myself, explained the four treatments I’ve had with their various effects and effectiveness, and asked if I might be able to speak with Dr. Shaw. I figured I didn’t have anything to lose.
“Sure!” she said. My eyes sprung open with surprise. “I’m not sure if she’s still here today, but I will ask her to call you tomorrow.” I thanked her, ended the call, and thought of how delightful and different the phone experience was.
Seth happened to take an earlier train home, and I was so glad he had. It didn’t take long for me to blubber out the day’s events. I then sat still for a moment to collect my thoughts and whispered, “I still have things to do.” Seth held me tight as I cried quietly on his shoulder. It was the kind of moment we don’t allow ourselves too often.
Or too long. There is little value in wallowing, especially when we are together. We turned on Family Feud and played along with Steve Harvey. Before long we had patched each other up with laughter. That evening I arduously climbed the staircase to the master bedroom and fell asleep in his arms.
It was just after 11am when an incoming call from Boston queued my country song ringtone. I took a breath and tried to suppress my excitement. “Hello?”
“Hi, I’m calling for Jessica. This is Alice Shaw from Massachusetts General Hospital.”
I first thanked her for returning my call. We talked and talked and talked. About my cancer and treatments. About LDK 378. And about at least three other trials my trial doctor never mentioned.
We talked for twenty minutes. Twenty. Freakin. Minutes. She didn’t know me. My doctor didn’t phone her regarding my case. She hasn’t seen a single slide, report, scan, or blood analysis. And she was NICE. She laughed at my jokes, asked follow-up questions, and put weight in my theories and the fact that I might know my body better than anyone.
Dr. Shaw even agreed that she can’t see a reason why prednisone would work for my abdominal pain and cramping. That’s one less decision I have to struggle with. Once again, though, I am an ‘enigma wrapped in a mystery.’ She indicated that most (if not all) patients who have abdominal pain also have loose bowels. And that once the diarrhea has resolved, the abdominal pain goes away.
It’s actually a running joke between Seth and I. Everyone wants me to have diarrhea. Each appointment I am asked no fewer than six times by various people. Sometimes they will just throw it in while recapping my symptoms, assuming I have it. “So you have pain, cramping, nausea, and diarrhea, right?” But no, everything is normal down there.
Towards the end of our conversation I asked Dr. Shaw if she would be willing to see me.”Of course!” she replied. I hope to hear from the thoracic coordinator later today so I can setup an appointment.
That phone call is one that will stick with me forever. I don’t know if what we discussed will lead to anything that will alter the course I’m already on. But in that twenty minutes, I regained something I haven’t had for a while. Hope.
Now I know there is another type of drug in trial that might help me. And there’s even a way I might be able to go back to LDK if everything else fails.
When Seth arrived home that evening my news was quite different.