Unwanted progress

I will tell you about the rest of my magical trip to Colorado. I promise. But first, I have to report that stability no longer reigns. I have transcribed some of the radiology report below:

LUNGS: Β On image number 51 in the right upper lobe there is a 1.1-cm ground glass nodule which has increased compared to November 30, 2010. On image number 57 in the region of the minor fissure there is a 5-mm nodule which is increased in size compared to the prior examination of January 20, 2011. On image number 61 adjacent to the minor fissure, there is a region of ground glass opacity which is mildly increased since January 2011.Β 

The inferior aspect of the left upper lobe nodule which was recently biopsied is mildly increased. For example, on image number 46 a solid ground glass nodule is 1.3-cm (previously 1.1-cm on the January 2o11 examination). On image number 51 in the left upper lobe, there is a 6-mm nodule slightly increased in size compared to the prior exam. A focus of ground glass opacity in the periphery on image number 50 is also mildly increased. An area of ground glass opacity in the left upper lobe image 57 is more solid appearing. End of ground glass opacity in the left upper lobe extending from images 63-97 is increased. For example, on image number 66 there is a region of ground glass opacity which is 4.3 + 2 + 1-cm (previously 3.7 + 1.6-cm). Increased ground glass opacities also demonstrated adjacent to the left ventricle.

PFS, or Progression Free Survival, is one of the criterium used to evaluate the efficacy of a drug in clinical trials. My period of PFS is now officially over, and I could be released from the trial. However, conversations have already taken place between my team and Pfizer. As I still appear to be receiving some positive benefit from crizotinib, I shall continue therapy with it.

I have a brain MRI coming up due to my report of increased vomiting and headaches; I feel it is related to the fact that crizotinb is no longer totally effective. A busy boy is a good boy, and not finding enough suitable targets in my body anymore, crizotinib has evolved into a bit of a bored boy, perhaps engaging in a touch of random mayhem (*not a medical interpretation–merely my own). Dr. Shaw is, however, diligent and although brain mets are unlikely with BAC, they are not unheard of.

My next CT scan will be in two months again and I am to pay attention to my symptoms. For the moment, I have slight SOB, some coughing, and a crackling sound in my left lung upon laying down. I am cognizant of all too familiar changes in my body, yet I don’t really feel sick (sad, yes, sick, no).

As far as possible treatment options; we are now tossing around three. Another potent ALK inhibitor, Novartis’ LDK378, has just begun enrollment for a phase I clinical trial. Studies have been done in the lab regarding my secondary mutation’s responsiveness to this experimental therapy, and it looks to be a good match. There is yet the possibility of an HSP-90 inhibitor or Alimta.

After my appointment I held it all together until I saw Marguerite, the head trial nurse. Then the tears flowed, as Marguerite is the kind of person who makes you feel as if you’ve entered a safe harbor. She hugged me and acknowledged the ‘suckiness’ of the report, but also reminded me that I still had significantly less cancer (perhaps 50%) than I’d had when I’d gone on trial. And now, instead of one wild card option, there were several. Not to mention the fact that I had this incredible team scouting out all the possibilities. Sarah popped in for a hug too and then Irene came in with her accupuncture kit and said she’d ‘fix me up’. I told her I’d take strong and brave. I don’t know if it was the needles or her companionship and conversation, but I was starting to feel better.

Starving, I tucked into my hospital ham and cheese sandwich and better than average tomato soup, followed by a red velvet cupcake made by Marguerite. That cupcake was several mouthfuls of happiness.

And then I gathered up my gear and composure and headed home. And I was okay, until I said goodnight to Peter and he started to cry. Damn.

I tell you what. No matter how ‘routine’ this all becomes, it can still kick the stuffings out of you at times. I will pull it all together, because that is what I do. But today I’m feeling a wee bit of battle fatigue. There is no other way to put it.

45 responses to “Unwanted progress

  1. Hi Linnea,

    Just read your blog…my heart is with you and your family. Everything about it sucks but you are strong, you have an amazing team working with you, and you have options. If you want to talk I am here. Love you! Diane

    • Hey Diane, can’t wait to hang out with you in a couple of weeks; and you’re right, options make an incredible difference.


  2. Pat & Will Plattner

    We are crying with you, as I’m sure all who know you and read this are doing as well. But nothing is better than a good cry…and then look with hope to the next step, the next drug………………never forgetting to dance.
    Our thoughts and love are making their way from here to your new home (and congrats to you and David and Peter)….I’m sure they won’t lose their way. Think margaritas this summer when we come to NH!!

  3. Karen Arscott

    Hi Linnea
    My heart stopped briefly this afternoon – when I read your blog posting.
    Hard to think of anything except what you are going through.
    Lost perspective and was re-focused by a friend (thanks Diane). You are strong and your medical team is the best – working together with new medical insights constantly available.
    So many focusing our love and positive energy in your direction!

    • Karen, thank you–all that love and positive energy is a more than tangible thing.

      Love back, Linnea

  4. Sad again, we hope for the best and the big C can surprise us time and time again.
    I remember having a head MRI because something in the brain causes/controls nausea and vomiting.
    We know that you are in the best place for treatment plus count on friends and family and your own attitude and genes.
    The good news today was at 6.30pm the mourning doves in my patio changed the guard living the nest for the first time for a few minutes and we have two babies covered with feathers and with more apetite that you!
    Irony that more in the nest is good news.
    Have a very big big hug.

  5. I told Beryl the bad news when she was preparing dinner, thinking on you she spilled wine all over the table and herself.
    The Greeks say that spilling wine is good luck!
    So cheers and good luck to you.

    • Guillermo, my good good buddy, I hope it wasn’t a fine wine and that the luck is the same no matter the vintage πŸ™‚
      The baby birds are a good sign indeed–life wants to live and on it goes. Take good care my friend,

      Linnea (hug taken)

  6. Linnea, I am so sorry to hear that the cancer is behaving badly. I know how much anxiety went with scans and waiting when Silas was fighting the beast. However, I am beyond pleased that you have options. Options that are good ones, according to tumor response in lab. That is excellent news. My heart goes out to your Peter and to you for the protectiveness we feel as parents. I am sending lots of love, and feel much hope. Maybe it is because I know how relentless the oncologists at MassGeneral are when it comes to fighting this with you, and maybe it is because I have seen your gentle warrior spirit when we met. Sending lots of love

    • Lorraine, your love and your assessment of my spirit each mean more to me than you can imagine…thank you.


  7. I posted on Inspire to you,but as I deal with progression now and some lab issues,I felt perhaps giving you a hug and just saying I hear you might matter tonite.Sometimes you just must wonder what’s next.But remember as Americans do we pick up and look for new and better places.times and possibilities because genetically ther are even maps out now on Dna sites showing patterns of our wanderings around continents.So as you say about the birds,life does go on and we are NDY,AndiB

    • Andi, I am getting back to these comments so very much later–but thank you. I have a thing about maps now (must think I’m going someplace) and I like your imagery. Thanks for the hug as well fellow NDYer.


  8. Dear Linnea,

    I’m still cheering for you. You have options and will continue to fight.
    I’m sorry this is so unfair and difficult for all.

    Will continue to follow and hope for brighter days.


  9. I feel so sorry that the cancer is progressing. Although you know the moment would come, it’s always hard to face. I know you can still fight the cancer, there are still opportunities, but of course you must feel scared sometimes. Good luck this period, full of decisions and new treatment plans. I think you are a great example of power for me, Keep your head up!!

    Love from holland-caroline

    • Caroline, for what it is worth, I find you a good example for me. So, I will, I really will, continue to carry on. It’s the only option that ultimately works. Hugs to you in Holland.


  10. My friend,
    My heart is heavy for you. But I also know that you are strong in heart and in spirit. I will be praying for you as you enter the next phase of this battle. I will pray for clarity as you and your treatment team decide what to do next. And of course I send you lots of love.

  11. Linnea the wine I spilt thanking of you was far from vintage. It comes in a box with a little spiggot. However, I choose to believe the Greek interpretation of spilt wine and that it doesn’t discriminate. I have been thinking about the most appropriate toast to you and the traditional Jewish toast is the one I like the best, a people who have a good understanding of suffering. So I raise a glass Linnea and shout “L’chaim – To Life”.

    • Beryl, I will take the Greek interpretation as well. And, yes please, do toast (a better use of wine, fine or not).
      xxoo, Linnea

  12. Linnea-
    I’m so very sorry for the latest news. Lung cancer is such a roller coaster ride- no matter how many times you hear about progression- emotionally it’s a punch in the stomach. When I was first diagnosed two years ago- I was so grateful to find your blog- you give me hope for persevering against this terrible disease and continuing to fight until the next drug comes along. I’m sad with you. 😦 Lung just sucks! Emily

    • Emily, just keep fighting; you are so young and there is so much to live for. If there really is reincarnation, I have often felt that I was a warrior in some other life. Nonetheless, sometimes I do just have to sit down and, as you said, be sad. Otherwise, I suppose we might forget exactly why it is we are fighting. Keep it up…and thanks for the support πŸ™‚


  13. Joan Zimmermann

    Hi Linnea- I am sorry you had less than stellar news; we are probably dealing with progression at the moment (symptoms say so) with my husband; it is not easy, I know. And when my grown daughter tears up over her dad, it is almost more than I can stand. Yet I do agree with your wise nurse that you have much less disease than when you started out, and you still have choices. Choice is always good! So with Guillermo’s little doves and spilt wine, I say Prosit, L’chaim, Life Life Life. Feel better soon. You will have a plan in place before you know it.
    Best to you always,

    • Joan, I am sorry that you are also (likely) dealing with progression. Such a funny word–as it feels like anything but progress. I feel deeply for our kids (of all ages), but you are correct; there are choices, a rather recent development in the fight against lung cancer. We will concentrate on that, and move forward:) Keep me posted…

  14. Andrew Santamaria

    Another door opens.

  15. Lydia (LCA friend from Colorado)

    I saw a link about your blog on DustyJoy’s page a little bit ago. I was sitting in a doctor’s office today and decided to visit your page while I was sitting there. My heart stopped when I read your words. I am sorry to read what is happening. I know I only spent a short time with you before I flew out to Denver from DC but listening to your story in DC was and is inspiring. You have a beautiful spirit and I know you will continue to travel this difficult road with grace, strength and love. I would love to spend time with you next time you head out to CO.
    Love, Lydia

    • Lydia, thank you and one of these days I will indeed look you up in Colorado–it would be great to spend more time with you.


  16. Dear Linnea,
    Thanks for sharing the incomprehensible. Your spirit and strength are beyond words. The blog is incredible. Thank you, thank you, thank you.
    Sending loads of love your way.
    joe c. / new orleans

  17. I feel as if I know you… really we’ve not yet met. But this I know…already I look to your for your strength, for the spirit that keeps you moving forward ready for the next choice and the next chance. I can already see you examining the map and figuring out where the next turn is and what you want to see and do along the way. I’m rooting for you.

    • Marj, heck, we’re practically neighbors (in at least two locales). I took a walk last evening and looked up the long hill to your yellow house…I am rallying (another map reference–I like it!).


  18. Dear Linnea,
    I’m crying as I just have read your latest post. I’m sorry I wasn’t around when you posted – I’ve been on holiday in Sicily and disconnected from everything else. Sending you all the energy I have to you, helping fight the feeling of fatigue. I’ll write you.
    Hugs full of hope, love Anja

    • Anja, I like picturing you in Sicily and disconnected for a bit. I hope you are full of energy and plans for the future and do wipe those tears–I’ve pulled myself together again.

      lots of love, Linnea

  19. Dear Linnea,
    One week short of a year of being on crizotinib, I experienced progression After a long winter into spring, the liver lesions are gone. Alice tells me they are hard at work trying to find out why this resistence accurs. I believe they will find the answers. And of course, future treatment options are on my mind too. In the meantime we will soon be leaving for a 3 week trip to Europe…a trip we planned long before the progression. I am thrilled that I am able to go. I will be thinking of you and sending positive energy your way. Stay strong and hopeful.

    • Evie, good to hear your voice. Alice (repeatedly!) tells me the same thing–we are in good hands. I am sorry you are experiencing progression, but glad it knocked your cancer back for as long as it did. Now that that I’ve allowed myself a funk, I am also concentrating on hope again. And hey, a three week trip to Europe, that’s a hopeful thing! Have a wonderful, wonderful time.


  20. Dear Linnea:
    Fill your lungs with Marfa’s air and see the mysterious lights, even in remote Canada we enjoy it the Globe and Mail.
    Time to start planning another trip.
    ( ) C ) Guillermo

    • Guillermo, I’ve been on a trip of sorts the last three days, alone in our new home. It has done me a world of good. Perhaps I shall get to Marfa soon as well.

      ( ) ( ) Linnea

  21. Linnea,
    Just back from DC – next year the LUNGevity Hope Summit will be open to all survivors – I am counting on seeing you there! We were a small group this year, but oh the stories that were told. And not too shabby being in DC.

    • Miss Stephanie, you need to tell me what I must do to get myself there, and I will. Be there. The stories are always hard but good (sort of jolie laide). And I must spend more time in DC–the Smithsonian alone could take days.


  22. Linnea,
    So sorry to hear about the latest news, but glad there are still options. I am still amazed and in awe of how strong you are; although I shouldn’t be because if I remember correctly, we were rough, tough, and ready! I’ll be thinking of you.

    • Hello dear Cheryl! What a memory! You were ready, but I can’t recall now if I was rough or tough…I think tough might be most appropriate.

      Love, Linnea

  23. HI..
    I’m sorry to read about the recent results of your cat scan….
    I’ve started following your blog with interest since I saw you speak at the MGH conference for cancer survivors. I was very moved and encouraged by your story (you looked healthy and strong up there on the podium!).
    I am also living with (Stage 4) lung cancer (EGFR mutation…different from yours…so I’m lucky that Tarceva is working for me at the moment).
    I have a blog too, if you want to follow me..(called “dancing through cancer”)
    I send you positive vibes (chi)..

    • Laurie, thanks so much for the chi–I’ll take all I can get! And I will definitely check out your blog. I am always curious as to what is up with my fellow travelers…stay strong…


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