I thank each and every one of you for the comments as well as the messages I received. My appointment yesterday was late in the day, and after arriving home around seven, I had a cup of tea and opened some emails. Too tapped out to write, I drew a hot bath and then went straight to bed.
David was out of the house early, so after driving Peter to school, I sat down at the computer and thought I better get a blog up. Alice called (bless her) with some measurements and clarification and then I decided that what I really wanted to do was go back to bed. And I did.
Morning naps are the best. I awakened rested and with that pleasant sense of momentary disorientation…still a bit tangled in the brief dreams I’d just had and totally free of yesterday’s worries.
So. The reports from the scan are not a catastrophe. What was characterized in the previous scan as ‘These findings may represent mild increase in minimally invasive adenocarcinoma‘ is now ‘Increasing round glass opacities in the lateral portion of the left lower lobe and slight interval enlargement of a nodule adjacent to the right minor fissure are suspicious for progressive lung cancer.‘
Simply put, it is clear that I am developing resistance to LDK378. My cancer, that tricky devil, has figured out a way around yet another therapy. The largest single lesion, which is actually a patchy ground glass opacity, measured 2.5 cm at its longest point on 2/21/12 and was stable from previous reports. On 4/03/12, there was a slight increase to 2.8 cm. The latest report, dated 5/15/12, notes an increase to 3.5 cm.
Clinical trials utilize a tricky algorithm called RECIST to measure response. The technique is planar, rather than volumetric and is based on averages from several target lesions. BAC, which is characterized by hazy infiltrates rather than clearly delineated solid tumors, is not given to easy quantification.
As Alice explained this morning, for the purpose of the clinical trial, my tumors are only minimally increased in size. This is important, because after a certain degree of progression has occurred, a participant will likely be asked to leave the trial.
That’s the good news. The bad news is that the cows are out of the barn and although not yet stampeding, they are getting mighty restless.
So what’s next? Stay the course for the moment. Inquire as to whether or not Novartis would grant permission to return to a dose of 500 mg LDK once again; albeit with careful monitoring of liver enzymes. Monitor my physical symptoms closely; there is in fact a bit of wheezing in both lungs now.
We will also watch that 6 mm spot in my right lung with interest; perhaps it might become a candidate for biopsy whereas the ground glass opacities are fairly useless in that respect. A curious aspect of this particular recurrence is that although the cancer is cropping up in pretty much the same spot it has before, the appearance is slightly different; more haze and less opacity. And that 6 mm nodule appears to be an entirely different beast altogether, prompting me to ask Alice if it is possible that these two separate areas of apparent progression might be driven by individual (and newly acquired) mutations, each conferring their own mode of resistance. Intriguingly, but damnably frustrating as well, the answer is yes, that is possible.
In conclusion, I started on LDK back in September of 2011. Nine months and counting for an experimental cancer treatment is really quite good, and I knew when I signed on, that this would be a temporary fix. I hope to squeeze another few months out of it but if that’s not possible, there are options. Which in itself, is an amazing thing.
I told Alice yesterday that I’m planning on attending Peter’s graduation from high school. That will be three years from now. She thinks it could be doable.
That’s all I need to hear.
life and breath: outliving lung cancer 
Linnea,
I have had many scans with varying measurements given. One time the tumor is slightly smaller, the next time it is slightly bigger. Don’t read too much into the results. It is really based on how you feel.
I had some good news and some bad news the last 2 weeks. As I told told you previously, I stopped the Zalkori (lost effectiveness) and started back on chemo (Gemzar). The good news is that it has shrunk the mets in my liver. The bad news is that it makes me ineligible for the Phase 2 LDK 378 trial for which I got a phone call this week. Oh well, once it gets approved, I’ll at least have that in my back pocket, if I need it.
Keep positive and you are in my prayers.
Larry, so glad about the good news for you but that is unfortunate regarding the bad news. Timing can be everything with these trials. You have the right attitude though–hopefully LDK378 will follow in Xalkori’s footsteps with a rapid benchtop to market turnaround. You are in my thoughts as well.
Linnea
((((<3)))
That symbol (<3) should have turned into a heart! Heart surrounded by hugs!
You are courageous and and inspirational!
Thanks Cathe. My daughter introduced me to the heart–it took me a while to get it though (I may be an artist, but I am graphically impaired). But I’ve got it now!
Best, Linnea
Good luck with your treatments (may you keep heart and keep moving forward) – Graduation is a great goal to be reached, even when it’s not your own! Wishing you strength galore to fight through,
Catherine
Catherine, thank you. My heart is still in the battle and wishes of strength are some of my favorite to receive.
Linnea
Yes, Alice’s words sound encouraging and I’d believe her. BTW, even if the GGO’s are too hazy to snag for mutation biopsy work, I wonder if the 6 mm nodule might be.
Best hopes,
Craig, having Alice as my (our) QB makes me feel almost unbeatable–as you know, she is just that good. As for the biopsy potential (she would love to find out what additional mutations may be mucking things up), I’m thinking like you’re thinking. Hope you are good and well.
Linnea
I definitely agree with Alice’s assessment. RECIST criteria are only part of the equation, and the cows in the barn are not all that bright. Not quite sure they passed algebra, and meanwhile Alice is well past the nonlinear stuff.
Oh how this roller coaster is hateful. I am glad you are feeling equanimity today- it shows.
More love,
Joan
Joan, dumb dumb cows. I pay attention to the RECIST criteria only insomuch as it affects my trial participation. It took me a while to learn this, but when it comes to lung cancer it is the qualitative that is much more important than the quantitative; on all fronts.
Love, Linnea
Always in my thoughts and prayers. I’m sure Peter will have his mom cheering him on. Keep visualizing clear lungs! Sending lotsa love.
Roy
/Roy, you would appreciate the little visualization mantra I employ for each and every CT scan. If there is a way, I will it! Love to you and Tomi.
Linnea
Your posts are so inspirational to me. I admire your grit and determination, also a sense of some bit of peace that I hear from your words and a calmness through the storm. Be well. So many people are cheering for you.
Thank you. I think that this blog, in its own way, helps me to see through the storm. Maybe it is because I am aware of the people waiting on the other side. All of you–it really does mean so much to me.
Linnea
Thank you so much for reporting in so quickly. Your community out here has been on tenterhooks. I’m pretty confident I speak for us all. I’m certainly inclined to believe anything Alice (Dr. Shaw) (aka the goddess) says. If she says doable, and you say doable, then so it shall be and damn the damn cows.
with love,
Cristina
Oh Miss Cris–tenterhooks it was! And you already know how I feel about the cows.
lovelovelove,
Linnea
I’m a follower, too, both in reading your blog and down the treatment path. Alice says she will make sure we meet if we ever have appointments around the same time.
I’m wondering what you consider your other options. Alice has spoken of them to me, but I really hope she’ll have approval for her new clinical study soon. Last time I spoke to her, it was 6 months. I don’t know if I’m going to be on LDK that long — I too have developed an area of resistance, but its a wait and see situation. Otherwise, the LDK has been effective so far. But if the new log isn’t ready when I need to jump – my metaphor is a log rolling contest, but you have to keep jumping from one log to another (I think there was a video game like this in late ’80s) – i.e. her new drug, what else is there? You’ve been so wise and brave through all this, I trust your instincts and analysis. What are you considering as your next “log”? Anything to keep us out of the river…..
Joni, hello–thank you for introducing yourself. I am sorry that you are facing resistance as well and I would love to discuss ‘our’ options with you. Perhaps we can compare schedules and arrange a meeting rather than relying on chance. And I like your log roll visual (an event I don’t think I’d be very good at–but oh, how apt). As for my next log…I think Alice is sorting out possibilities and in the meantime hoping we can just buy more time. Ideally, there would be an area of my cancer that could be biopsied so as to determine the mechanism of resistance this time. That may not be possible though. So–the truth is, I don’t know what the next best thing to do is. If Novartis gives the ok–I might like to try upping the dose again. However, this has been a challenging week GI-wise as well, and that gives me some pause.
Heads above water will just have to be our motto. Stay in touch and let’s meet for real.
Linnea
Linnea, have been waiting for this post, thinking of you and sending healing love. It is no fun that this cancer acts out in ways that makes it very difficult to control, much like an adolescent with issues outside of the norm of adolescence. What works in the moment often needs to be reassessed, and we learn to live in that moment even as we know we may need to change course down the road. Options are imperative, and even in the shit storm, beautiful words to hear. I am trusting that your team will find the best possible treatment for you to move forward from here. I am also trusting on you being here to see your son graduate. love you my friend ~ Lorraine
Lorraine, we have each been challenged by circumstances that are similar and I understand only too well what you are saying. There is something else we have in common, and that is our ability to keep on surviving even when it hits the fan. I admire you so and though it took a tragedy for us to find each other, I am glad you are in my life.
Love, Linnea
Safe passage through this next part of your journey. We look forward to seeing you this summer and having a drink together (non-alcoholic will do just fine)! We will toast to Life!!!
Pat, what a sport, not drinking with me! L’chaim!
Best,
Linnea
Hi Linnea,
You are such a strong woman!! My friend is back to the hospital and it is not good at all…after the lung, the brain..it seems the tumor is going to the bones…Reading your blog is always such a big help for me…
Can’t wait to see the graduation’s pictures in 3 years.
Much love
Babette
Babette, I am sorry to hear your news about your friend. This can be such a vicious disease. Thank you for being on this journey with me as well.
Love, Linnea
Linnea – just recently found out that I have become resistent to crizotinib. I dark day after getting the news. Reading your blog gave me hope that I needed yesterday when I came home from the doctor. Today is a new day and am seeing Dr. Shaw in a couple of weeks to discuss LDK 378. My children are 9 & 10. I don’t know if I can make it to their graduation, but I want to do all in my power to have that be a goal. Best wishes to you. Your writings mean more to me than you will ever know. Regards, Johanna
Johanna, I am sorry about the resistance. There will be other options. And as for the future, think big, but not so big that you don’t get to celebrate milestones. Peter was only 7 when I was diagnosed, and my goals have adjusted as he has aged. I never thought I’d see him as a teenager, and look what happened.
Best, Linnea
love, Love, LOVE you!! I love the “Froggy” video game metaphor as well, and boy are we getting good at it!! You are always in my thoughts and prayers, and I am grateful for your inspiration.
Stephanie, so good to hear from you and I hope you are well. Slippery timbers it is for us, but yes, we have somehow kept our footing.
Best, Linnea