Tag Archives: progression

Update

I had my CT scan and appointment with Dr. Shaw yesterday. As anticipated, the news is not particularly good. The radiology report reads: ‘A mixed attenuation lesion in the left lower lung zone now measures 8.4 cm, previously 6.9 cm. There are also increased small ground glass nodules adjacent to the lesion. The central solid portion of the lesion now measures 6.2 cm, previously 4.4 cm. A mixed attenuation lesion in the anterior right upper lobe now measures 1.4 cm, previously 1.4 cm. Another right upper lobe lesion now measures 7 mm, previously 4 mm. Inferior right upper lobe mixed attenuation nodule measures 1.5 cm, previously 1.2 cm—Interval increase in size of dominant mixed attenuation lesion in the left lower lung zone and some of the right upper lobe nodules consistent with worsening lung cancer.

Still, were I not symptomatic, Dr. Shaw would consider leaving me on Xalkori for a little longer. However, upon examination she noted how very wheezy I am and we both agreed that it is time to try something else.

Two weeks ago I realized (with no small degree of horror) that I had gotten mixed up on my medication and had been taking my Xalkori only once a day. At most I made this mistake for two or possibly three weeks but I was absolutely mortified when I reported my discovery to Alice (Dr. Shaw). Hopefully it had no major impact upon my response, as my symptoms had never abated. However, it is a potent reminder that I have been terribly distracted. As Alice remarked, I have a lot on my plate.

I am to start the new trial on the 13th of May. We have a scheduled mediation for our impending divorce on the 16th and my first impulse was to push back the trial date. Last night I did a lot of soul searching and realized that I need to get my priorities straight (the mediation can wait if necessary).

In addition to my own worries, Pete is experiencing some challenges (kid can’t get up in the morning) and I’ve been back and forth to Exeter a number of times. Desperate times call for desperate measures, and I am setting my alarm for 7:20 every morning so that I can place a rise and shine call to my sleepy son. Yesterday I had to call repeatedly; today he picked up on the fourth ring.

I confess to feeling somewhat overwhelmed. However, my internal dialogue moves quickly from wallow to wonder; I am still here.

Live, love, life.

 

Flights of fancy

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And leaps of imagination. These are some of my favorite images from the shoot last week with my friend Sadie Dayton. Our day began early; we were on the┬ábeach at sunrise. Sporting at various times a bird mask, vintage silk lingerie, satin slippers, fishnet stockings, and Peter’s great grandfather’s dress tails, I frolicked in the early morning light as Sadie shot frame after frame.

We, Sadie and I, have always seen the best in each other. In some ways, she is like the twin I longed for as a child (oh–the trouble we could have gotten into!). Our mutual understanding and trust runs deep: in her presence, I am completely comfortable and free from inhibition.

When asked to take these pictures, Sadie said yes without hesitation. She understood the sense of urgency; my need to see just exactly where I am, right now.

Standing on terra firma, with spirit intact.

Results

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.