A Tale of Two Days

March 4

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.

March 5

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.

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14 responses to “A Tale of Two Days

  • Gregg and Saule

    So many times we swallow what Doctors feed us and we SHOULD be asking for options and other opinions. It isn’t about the protocol and niceties anymore, it is medically and clinically sound procedure to follow. As with Dr. Shaw there are some very good doctors out there that still combine good medicine with good communication. Good girl Jessica. Stay strong.

  • Sjoukje

    Reading this blog made me cry……I am hoping with you Jessica that Dr.Shaw is able to help you in some way. And how wonderful she took the time to call you and listen and talk.

    Sending you much love as always
    xx

  • Craig

    Jessica,

    I am so glad you reached out to Alice (Dr. Shaw). I’ve been hoping for that every since you tried Xalkori. (I would have been glad to put you in touch with her at any point.) As I’ve said elsewhere, in my personal opinion she’s not only the #1 “superdoc” oncologist for ALK research, but she’s super-smart, has a great “bedside manner”, works very hard for her patients, and really cares.

    And because her team does leading research on ALK patients (and ROS1 patients like me), they may have tests and insights that aren’t yet available elsewhere. (Other research centers with a well-funded ALK research program also do good work, but MGH is still the leader in most aspects of it.) I think you already got a sense of that over the phone.

    FWIW, someday I’ll run out of good things to try, but until then my life couldn’t be in better hands than hers.

    I’ll contact you separately to mention a couple of other things.

    Best hopes,

    Craig in PA
    – an early Xalkori-for-ROS1 trial participant (still)

  • juli@djvassociates.com
  • Ed

    Jessica,

    You are an inspiration to all – those battling illness and those supporting them – and you continue to hold on to your wit and personality despite the struggles you face every day! A-mazing! Your perseverence and ability to share your hope with others provides a perspective that teaches us all. Sending good thoughts your way for a great meeting with Dr. Shaw.

    Ed

  • readytotell

    You go Jessica!! Pulling for you and your amazing spirit and ability to stay present to the world you are living in. You are alive. You are loved.

  • kimmywink

    Jessica,

    I’m so happy Dr Shaw is as great as her reputation. Do keep us posted on how the appointment goes and options she presents to you. Option-S with an “S” – SO EXCITING!

    Thanks for sharing the good news. Your happiness has brightened up my morning!

  • Kayla

    You’re inspiring, we love following your blog on this journey. We wish you healing and many more good days. Keep on keeping on!

    Lots of love and bunny hugs!

    Kayla, (and Tallie & Digby) ❤

  • stage5cancerblog

    They try sometimes to take our hope, and it becomes clear that their agenda is not always what is best for us. Many try to make us stage 4 folks dissapear, litterally. We won’t let them take our hope, and their are good people like Dr. Shaw, and my doc at MD Anderson and even my Onc here in Austin, who give us hope. Keep on pushing, don’t stop. It might be time someday to stop, but not today! You inspire me and give me hope, by your bravery.

  • Ang

    Hope springs eternal! You are an inspiration as is Alice Shaw. A little kindness, some laughter and respect are good medicine.
    It’s great that you’re going to see her at MGH. Good luck and I hope the visit yields more options for you.
    Be well.

  • Melanie

    Hope, Dr. Shaw, sounds like options to me. Best of wishes and prayers of course.

  • Dora

    Dear Jessica,,,
    i wasnt aware that you keep an update on your condition-Sjoukje let me know and i am glad to see how brave and strong you are.I am so happy that you are such a positive person.Dr.Shaw was so kind to call you and i do believe and wish she can help you with this.All your bunny friends are here for you and please let me know if there is anything i can do,whenever you want something..
    The bestest wishes from all of us to you and all our love ❤
    Dora & the buns 🙂

    • Jessica

      Oh Dora, I’m so glad you found me here! Bunspace just gets so overwhelming to me that I’ve kinda avoided it lately. That, and there was just too much sad news. I hope you and your kids are doing good. xo, Jessica

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