Tag Archives: progression lung cancer

Bitch is back

When I awakened yesterday morning my first thought was that I would be getting bad news at my scan review later that day. And then my second thought was that if I was truly experiencing progression, Alice was already both aware of and on it.

Two for two.

Like some pernicious weed, my cancer is cropping up again in the same exact spots it always does. Nothing drastic yet—interval thickening and slight increase in size—but the concerning part is how quickly I have become symptomatic. That and the fact that I have now acquired resistance to three ALK inhibitors, with lorlatinib being the biggest hammer in the tool box and supposedly covering most resistance mutations.

Slice of me

So I’m up a bit of a creek. Last night I got a text from my youngest in which he said he was so sorry and then ‘I’m scared.’ I wrote him back saying that I was also sorry and scared but that I was strong and Alice is smart and we will figure this thing out.

At the moment I am staying the course on lorlatinib. We did discuss going up in dose but Alice felt I would experience no true therapeutic advantage while increasing troublesome side effects.

I will scan again in eight weeks and Dr. Shaw is looking into whether it would be safe to perform a needle core biopsy. One area is too close to the diaphragm and the other is inconveniently located underneath my left breast. The last time I had a biopsy it was straight through my boob (as uncomfortable as it sounds).

Hopefully that will be possible though as it could help us figure out possible avenues. Discussed so far have been radiation on the area furthest from the diaphragm and a combo of lorlatinib and some other agent.

Mostly I am sad. Feeling fine (not so very long ago) was absolutely amazing. I’m on a roll with my art/writing/gym/dating and I realize this is going to put a major crimp in things. In short, logistically life is going to get a hell of lot harder and I’m not looking forward to it.

Per the bigger picture, I’m trying to keep my head from going there. Focusing on what’s right in front of me is going to help me maintain my cool and my courage. And I’m gonna need them both.

However, I’m not in this alone. The outpouring of messages after I made a post on Facebook confirming progression has been astounding. As I left my appointment yesterday Alice and her PA Jen Logan both hugged me hard. And then Jen looked me in the eye and said ‘We’re going to fight this together.’ I know she means it.

It was good while it lasted.

Stability, that is.

As any metastatic cancer patient understands only too well, what doesn’t kill you often just keeps trying.

I’ve been in this battle for so long now–more than eleven years–and most of that time has involved active combat with an ever advancing foe. But thanks to lorlatinib, my disease has been stable since June of 2014; my most sustained period of response yet. As a bonus, I’ve felt so damn good it’s been easy to imagine myself cancer free.

However, my scans have always told a slightly different story, with remaining nodules and opacities scattered here and there.

Lungs and Airways: The patient is status post left lower lobectomy for lung
cancer. There is a left lower lobe solid nodule on image 41 series 201 measuring
5 mm unchanged dating back to 5/14/2015. There is also subpleural patchy opacity in the left lower lobe image 63 series 201 that remains stable compared to 5/14/2015. There are small centrilobular groundglass nodules in the left lower lobe image 51 series 201 also stable compared to 5/14/2015 the largest of which measures 9 mm. There is a stable 2 mm right upper lobe nodule image 32 series 201. There is a stable subpleural groundglass nodule in the right upper lobe image 48 series 201 measuring 5 mm. A second groundglass right upper lobe nodule measuring 5 mm but is essentially unchanged from 12/10/2015 and 4/14/2016. A 4 mm solid nodule along the right minor fissure is stable. There are no new nodulesPleura: There is a small left basilar postoperative pleural effusion that remains essentially stable.

The words unchanged and stable are absolutely key here.

However, on my scan report today it was noted that one nodule had in fact changed size: There is a 5mm nodule on image 52 that appears to have grown since 5/14/2015 when it measured 3 mm but is unchanged compared to 3/6/2016.

Obviously it had escaped the notice of previous radiologists. However, upon reading today’s report, my oncologist Dr. Shaw reviewed the scans and agreed that this particular nodule had in fact enlarged and likely represented progression.

Nothing to panic about but a potent reminder that shit is still real.

Dr. Shaw is already talking game plan. We will scan again in three months. If the nodule continues to grow, we might biopsy in an effort to determine what the mechanism of resistance is. If it can be identified, I might be a candidate for a combination therapy of ALK inhibitors. As this is a solitary nodule and in my right lung this time, surgery is a possibility. So is radiation.

Stability may have been rattled but I’ve still got options.

And honestly, that’s the most important thing.