No, it’s you not me.

From October 2011 to February 2013 Crizotinib was my go-to targeted therapy.  We had a good run but like all things, it has come to an end.

After careful evaluation of my February 13th chest and liver CT scan, it is determined that I have progressed on Crizotinib.  The amount of progression necessitates a change in treatment – bye-bye, Criz!  Our last encounter, Valentine’s Day, was a good day to end a no longer mutually beneficial relationship.

Staying 100% focused on WBR after getting the “progression news” was troublesome. Yet, I needed to keep my head in the WBR game.  If I could not make it through WBR my future chemo would mean squat.  Dr S did an excellent job of communicating with me about forthcoming chemo options and not stressing me out.  Have I told you lately how grand he is?  He is.

The next step is a tad up-in-the-air, nonetheless worthy of announcing to the greater good!  I’m fairly certain that it will come to full fruition; like hair growth in a few months. Later this week, SW and I are headed to Washington’s Seattle Cancer Care Alliance to discuss the LDK378 trial with Dr Renato Martins.

LDK378 is a drug sponsored by Novartis Pharmaceuticals.  The trial that has my interest is titled:  LDK378 in Adult Patients with ALK-activated NSCLC previously treated with kim + yamChemotherapy and Crizotinib.  This is a Phase 2 trial where the testing protocol is established.  What that all means?  I’ll have to let you know.  This IS my first rodeo.

The LDK378 trial, or any trial for that matter, will be a brand new world for me. Thankfully it is not brand new to the rest of the world.  I am cautions and optimistic. For the most part, that’s how I roll.  Thank you body for not developing resistance to antidepressants!

About kimmywink

I'm Kim. I've got advanced lung cancer. It sucks.
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18 Responses to No, it’s you not me.

  1. Sharon Wierwille says:

    I am on LDK and so far, so good (only one week so far). Go for it. There are a lot of Phase 2 locations opening up.


    • kimmywink says:

      Great to hear Sharon! I’m glad it is going well for you so far. Do let me know how the first set of scans go. I’ll be keeping my fingers crossed for you.

  2. Kim,

    First, thanks for your candid and enlightening approach to sharing your treatment. It helps to keep ones perspective…

    Second, Dr. Martins (Renato) is my onc and has been since day one of my diagnosis. You’re in the best of hands and have the ‘A’ Team…trust that! I have traveled the country speaking and listening to the Oncology community. He is very well known but most of all respected. Please say hello to him next time you speak/meet. I only see him twice a year now. Not that I miss him mind you, just happy that he treated me and I now see him less than in the beginning.

    Lastly, ask him about the BMS trial he is participating on with immunotherapy. I’ve never seen him more giddy/positive than the last time we met. He actually stated he believes it’s ‘The beginning of the end” wrt treatment of the disease. He went on to say it’s the greatest breakthrough he’s experienced since beginning to treat LC.

    Best and keep up your wonderful sense of humor. I believe that is better than any clinical trial.


    • kimmywink says:

      Thank you for all of your comments. 🙂
      I will certainly bring up the BMS trial and mention that you told me about it when I meet with Dr Martins. Knowing that he is excited about it certainly has peaked my interest!

  3. Diane Fink says:

    You “saddle up and go girl”, keep up the positive thoughts and sense of humor, you are great.
    Like the pic of how relaxed the cat and you look. Back yarn looks great, too.
    Love ya, Diane

    • kimmywink says:

      Thanks for the compliments, Diane.
      I can’t wait to watch the backyard grow in. The fence is pretty but foliage is where it’s at. It will make the perfect happy trifecta: me, cats, and birdies. xo

  4. dwilliams066 says:

    I did a 2-1/2 yr trial at SCCA and can’t say enough about the people and facililty. Being in Portland you are much closer than I and may not need lodging, but the SCCA House is a wonderful place to stay. I hope this trial turns out to be just what is needed.

    • kimmywink says:

      Great to know about SCCA and SCCA house.
      I don’t want to get too ahead of myself but I have thought a bit about traveling. I’m a bit of a wimp when it comes to driving 6 hours in a day. Staying overnight or train transportation are my top rankers so far. I would not turn down a private jet, although, the likelihood of that falling into my lap is less than getting LC in the first place.

  5. bitty says:

    Looks like I may be one step behind you once again as we are looking to enroll in the LDK trial after we wrap up WBR. I feel I should send you something for being my own personal guinea pig of sorts! Hope you are feeling okay and not experiencing a lot of leftover fatigue, and best of luck in Seattle this week!

    • kimmywink says:

      Well, I hope all goes well for me too as it seems to be an indicator of your future!
      The fatigue has kicked in, but I’m not ill what-so-ever. My ears are burnt and need lotion a few times a day. Again, a very easy to manage side effect.
      I hope your experiences are similar.

  6. as you would say, “poo”, keep fighting, keep writing, we’ll all keep praying xox

  7. ps, looks like your Dr. S has a video up on Grace Facebook page.

  8. gwendolyn says:

    LOVE THAT PHOTO. it looks simply PERFECT. thanks for sharing something so peaceful/perfect! hope your team is able to figure out the next steps – i remain optimistic for you too! 🙂 hugs

  9. tammy says:

    You and yam look pretty comfortable so Yam must be thinking LDK is the way to go. And, I consider Yam a very smart creature…..even for a cat. I am totally behind you, LDK, basking in the sun, and Yam’s intuition!

    • kimmywink says:

      I’m going to remember that you called Yam “a smart creature!” I plan to hold it over your head for years AND years…my dog lover friend. Love you Tammy!

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