Big four oh!

I had my second chest CT scan since starting on LDK378 a little over a week ago. The report from the radiologist was basically ‘stable’, But at a scan review with Dr. Shaw, there was clearly visual evidence of further improvement (lessening density of the ground glass opacities). The trial review board at Novartis must think so as well, because several days later Alice emailed to say I was now at the 40% mark, which is the cut off for a partial response. It’s not as clean in there as it was after I started crizotinib (Xalkori), at least not yet. But we’re working on it.

September of 2008/pre-crizotinib

November 2008/post-crizotinib

For comparison, here are the before and after images of my lungs in 2008. The left lung is actually on the right of each individual image. It is smaller than the right lung, because the entire lower lobe was removed in 2005, at the time of my diagnosis. Before I started the PF-03241066 trial (crizotinib, Xalkori), the remaining upper lobe of my left lung was getting pretty filled up with cancer, and you can see some activity starting in the right lung as well; particularly near the top.

August 2011/pre-LDK378

The image above is from a photograph I took of my chest CT scan as displayed on a computer monitor, so it’s not as clear as it could be. I’ve not included the two scans I’ve had since I started the trial, as I’m not certain if I am allowed to do that yet (as a subject now, not a patient, the rules are not the same). I’ve included this image simply to give you an idea of how much cancer had come back. Not as diffuse as in 2008, but well on the way and really rather dense in the bottom of the remaining upper left lobe.

So, what I can’t show you, but can tell you, is that the most recent scan is significantly clearer (and if you are considering percentages, 40% certainly sounds twice as good as the initial 19% resolution). I’m no longer coughing and my lungs feel fine.

This trial is in the dose escalation phase, and I entered at 250 mg. Per protocol, once the subjects at the next higher dose had gone without adverse events for two cycles (a cycle is three weeks long), I would be allowed to go up to that dose, or 500 mg. Last monday was my first day at the stronger dose. I’m hoping stronger=more effective yet.

So all in all I’m feeling well. Occasional bouts of diarrhea would seem to be a side effect, and I’ve become mildly anemic, which leaves me a bit rundown and intolerant to cold (not quite as rosy as I once was either). It would seem to be a mixed etiology of nutritional anemia and anemia of chronic disease, according to my labs (and my oncologist!). My hematocrit is 31.2 (normal reference range 36-46), my hemoglobin is 9.6 (normal reference range 12-16) and my MCV (mean cell volume) is 72 (normal reference range 80-100). My iron level is 18 (normal range 30-160) and ferritin is 6 (normal range 10-200).

In a subsequent post I will  go into greater detail about anemia (I’ve been reading up on it, and it’s rather fascinating).

So that’s the medical update. I’m off to eat some spinach.

29 responses to “Big four oh!

  1. Great news! Must be a big boost to you and your family – just before Christmas too … Much love x

  2. Woohoo! This is wonderful news! I suspect you’re going to be a Novartis cover girl. xoxo

  3. Linnea- could not ask for better news! Lack of cough and the feeling of general well-being tell the story crisply. Go Popeye! Keep us posted on your corpuscles.

    • Joan, thank you. Funny, when I was a kid, my dad used to tease me and call me Olive Oyl (I was particularly skinny). (sp?). But it was Popeye that I wanted to be–just ripping those lids off the cans of spinach!


  4. This is the best Christmas gift! Here’s to stronger equaling more effective yet. And here’s to spinach. And to you.

    Big cheers,

  5. Dearest Linnea,

    I’m so happy to hear such wonderful news!

    Seasonings Blessings to you and yours. And many more to coming the New Year!


  6. Ah Linnea, what a good way to end a roller coaster of a year! Thanks for sharing this good news. Sending lots of love ~ Lorraine

    • Thank you Lorraine. It has indeed had its ups and downs. Happy Holidays to you. Let’s get together next year, okay?


  7. Linnea
    I can feel your joy and peace all the way up here! You are marvelous…strength…courage and wisdom.. Wishing you and yours a peaceful…loving Christmas and a continued well being!!


  8. Gwen, if you can feel it, it must be true. Thank you for all the kind words and wishes and a wonderful Holiday back to you!


  9. Pleased to hear this. Here’s to 2012!

    • Stephanie, i’ve been wondering where you were 🙂 I hope you are well and rested after what I hope was a splendid sojourn in warmer climes. I am looking forward to the New Year (so I can make a new list of improbable resolutions!)

      Love, Linnea

  10. Good news like this is the best Christmas present I can think of! Missing you tons already.


    • You too little bro (the missing part). And yes, it’s always nice to end the year with confidence that I’ll be here for the New Year as well! Your shirt and Shannon’s gift will be mailed manana…Love, Linnea

  11. Hurray! Clear lungs and a strong voice are fine ways to end the year and truly gifts that keep on giving (this I know). Wishing you wonderful holidays and continued success on the trial!


    • Jazz, I spent a bit of time on your wonderful blog the other day and will catch up more later. And you do know! Happy trails to you as well.


  12. Well, wow wow wow again!
    This is fantastic, I’m so happy for you, dearest friend!
    As you know I have been carrying the little lucky charm aroud my neck every day since I received it in the mail from you. A few weeks ago, I found the silver-link hanging open, the little hopeful piece gone. I was so sad, and beginning to fill upp with fear. Those lucky-things are not supposed to disappear…. I began to wonder what kind of sign it was – about your health and mine. Then, ten days later Otto managed to push a car under the bathtub, and I had to find a long stick to reach it. And what comes rolling out, right after the car if not the litte lucky-charm! Don’t know how it found it’s way to such a hide-a-way, but it sure now has showed it was time for good news again!
    Lots of love and those swedish stong hugs for you!
    Miss you, Anja

    • Anja–what a story. In fact, it has inspired me to write a blog about my own similar lost and found experience. I think the fact that the charm came back is doubly good luck. Ingo sent your new contact info–I am so excited for the adventure that lies ahead for you. Much love and happiness to you and the boys this season!

      Miss you too, Linnea

  13. Glad to hear you have no excuse not to belt out those Christmas carols with the best of them.
    Merry Christmas.

    • Ah Beryl, I was singing carols in the car last night. With great vigor but off tune. I was telling Peter how I missed the annual Christmas Sings (that’s what they called them!) of my youth; when I was in primary school, all the students would stand on bleachers and give a concert to our assembled relatives. In first grade I sang so loudly and so badly, that I was asked to play the bells instead. A supposed honor; but I knew what was up. A tactful way of ‘silencing’ my vocal discord. It cannot be done!

      A Merry Christmas to you,

  14. Thanks for your post. My wife just started 378 trial in Boston this December in Boston with Dr. Sequist. She is improving but still dealing with depression from whole brain radiation but also improving.

    • Seth, lung cancer is depressing anyway and having WBR just can’t help. I am hoping she responds to LDK. I am beginning to have some GI issues with it (at 500 mg), but when they let us eat right/before after taking the pills, hopefully that will help. Say howdy if you ever recognize me in the waiting room–usually Mondays.

      Best to you both,

      ps: Mary Susan Convery, the thoracic oncology social worker, is a wonderful person to see for issues of depression (and other issues as well). She has been a real life saver for me.

  15. Pingback: Playing the numbers | life and breath: living with lung cancer

  16. I have stage IV non small cell adenocarcinoa. I am 40 years old and have a son, 8 and 2 step children (7 and 11) and a beautiful new bride (heart, mind and soul…and shes very easy on the eye I must say, and is the love of my life). I was a non smoker. I just want to be around to see my kids grow up and have time with my wife…much more time.
    It started in late 2009, a persistent cough that did not resolve after 5 rounds of antiboitics, allergy testing and treatment.) They totally dropped the ball on me. Xrays only, no CT of chest. Said it was “normal”, however, after the fact, another radiologist friend of mine saw the lesion. In dec 2010 I was diagnosed at STAGE IV!!
    I completed 11 rounds of Avastin, and Alimpta, and the 1st 6 of the 11 months I was also on cisplatinum. They then rebiopsied my liver and found I was ALK positive. I’ve been on Xalkori almost 6 months and there is little improvment and likely progression. I am trying to research Specialists in ALK mutations. Any help would be greatly appreciated.
    I am a Optometric Physician by occupation so I understand the science behind the pharmokenetics of drugs. I am recently at MD Anderson but my physician said I was the first ALK positive she has seen. Not real happy with that as my previous oncologist had made out that she had seen cases before. I need a doctor that has experience with ling cancer and ALK. A person who sees lung cancer night and know?

    thank you

    • Michael, I already emailed you, but know that I wish you the best of luck and that you find a doctor well acquainted with our uncommon (but yet statistically relevant) mutation.


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