On to Plan D

Today was my doctor’s his first day back from vacation, and I knew he would have plenty of calls to make.  I was very surprised when a voicemail popped up on my phone at 11:15 this morning.  ‘Of all calls not to ring through…’ I thought, and called him immediately.  After waiting on hold for less than a minute, my doctor came on the line.

The news wasn’t good.  The cancer has worsened in my right lung.  The scan also showed increased disease in the lymph nodes in my chest.  And for the first time, the lymph nodes in my upper abdomen also appear cancerous.  My other major organs and bones are still cancer-free; I forgot to ask about the spot on my spine.

I’m clearly finished with Gemzar.  It didn’t do a damn thing.  So now my doctor and I need to figure out where to go next.

He has calls into his contacts at two major cancer centers to check the status of clinical trials for two second generation drugs for ALK+ cancers.  (My doctor affectionately calls them “Son of Xalkori.”)  One drug was created by Ariad and is known as AP26113.  The other is a Novartis effort known as LDK378.

I have mixed feelings about joining a trial; my decision will largely depend on which phase I would be joining and what my doctor recommends.  It’s also important to note that the people who run the studies could decide I am not a good candidate.

I will speak with my doctor again on Monday.  Hopefully by then we will know enough to figure out what Plan D will entail.


12 responses to “On to Plan D

  • Craig

    I’m sorry to hear that update. I wish I could help.
    Regarding Novartis LDK378 and Ariad AP26113 (and you can add Chugai CH5424802 to the list), the preliminary data from trials is looking very good, better than Xalkori in terms of having a high % of ALK patients getting a “response”, i.e., 30% or better shrinkage). But the key is whether the cancer really is driven by a variant of ALK that one of these drugs is good at.
    So if I were in your situation, rather than just taking another gamble, I might want to see if there’s a lab that can determine which specific variant of ALK mutation I have (and verify that I really have ALK-driven cancer). (For example MGH in Boston, where the #1 research oncologist expert in ALK-driven lung cancer is, might be able to.)
    Phase 1 and 2 drug trials can be great if you already have some idea of how effective and tolerable the drug is for your kind of cancer. For those phases you know you’re getting the drug. Phase 3 trials usually randomize you so you might not get the drug, at least not initially. None of the three good 2nd generation ALK inhibitor drugs is in a Phase 3 trial yet.
    Best hopes,

  • readytotell

    Based on what he says about the cancer, do you feel different ? Were you already feeling this news? Or is the news a surprise? Perhaps you will be ok to relax a bit. Sometimes
    I think about treatment and wonder if it improves quality of life or not.
    You have all my best wishes and healing thoughts.
    Your friend in Richmond,

  • carol

    Please don’t give up. You have the fight and this.world is better because you are here. I will continue to pray. Miracles happen every day and you just have to keep trying. You are always in my thoughts and prayers. tell us all what we can do for you to help.

  • stage5cancerblog

    I am holding you in my thoughts. Sending to you stregth and wisdom to continue the fight. You are even stronger than you know!

  • HP

    Aw Ka-rap! Not what I wanted to hear. It sounds like your Dr has some good resources. Plan D is still a plan, so please keep us posted on developments. Thinking of you often!

  • Sjoukje

    Sorry to hear this news Jessica…wish with all my heart is was better news instead. Like Carol said: please don’t give up. Hang in there! There has to something out there that can help you. Thinking of you!!
    much love from me and the buns. xxxx

  • Ed


    I am also sorry to hear your news, and hopefully your discussions with your doc this week will solidify a strong treatment regimen that gets better control of the cancer. My thoughts are with you!


  • Mary Ruggiero

    Jessica, you are amazing. I really don’t know what I would do in this situation. I feel honored to be so close to it as it it unfolding. I am never quite sure of what to say and I hope that anything I do say is comforting or at least real. You are being so real. Let me know what you need from me, if anything. I really appreciate you and think of you all the time. i would say “be strong,” but I know you are already strong. Just know that you are very special and an inspiration to me personally. Please tell me how I can help

  • kimmywink

    Craig (above commenter) certainly knows his stuff! It sure would relieve some phase 1 trial stress if a test could show which drug is likely to be more successful.
    I’ve read on Linnea Duff’s blog that she went through this test with Dr Shaw at MGH. She’s very helpful and responsive (Linnea)- I’m sure she’d provide you with info if you request it. Could be worth a lot contacting her directly.

    • Jessica

      Hi Kimmy, good recommendation. I’ve corresponded with Linnea in the past. I’m going to meet with the local lead of the same study (LDK378). Date TBD. I don’t want to be in phase 1, but my doc said they are moving on to phase 2, and I may be eligible. I have mixed feelings on doing a trial, but I know an ALK inhibitor is my best chance for stability. I had short-lived stability on Xalkori but quickly developed a resistance. I’ll keep you updated.

  • linnea11

    Jessica, I don’t know how I missed your blog before, but hey, I just stumbled upon it (and recognize some other old friends here). Now I feel more connected! I’ve yet to update my own blog, but I will be staying on LDK378 for at least one more cycle. Suck the most time out of each therapy possible! Good luck making your decision on what is next…


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