Tag Archives: carboplatin

About time

Sort of ridiculous, but my About on this site was some 4 1/2 years out of date. Whoa, good problem to have, rewriting Abouts. So, it’s been freshened up a bit. About time I might say. Little preview here (to save you from having to push that About button):

Time for a new About! The last one had me six and 1/2 years out from diagnosis, on crizotinib (Xalkori) and happily married. So much water under the bridge since then, my friends!

So, updated version. I was Linnea Duff, but I’ve been divorced since 9/1/15 and have reclaimed my birth name, Linnea Olson. I am now 56 flipping years old–old enough to qualify for a senior’s discount at Salvation Army and Saver’s thrift stores. And I couldn’t be happier. Old age is not a problem, it’s the goal!

Crizotinib bought me close to three years, but in the time since I spent 18 months on trial for ceritinib (Zykadia—where do they get these names?), returned to chemotherapy (carboplatin and pemetrexed), took a breather, returned to crizotinib and then in May of 2014, started my third phase I clinical trial for lorlatinib. Despite having acquired some secondary mutations along the way–S1206Y and G1202R–I have had both a positive and sustained response to my third ALK inhibitor.

In April, it will have been eleven years since I was diagnosed. My three kids are all adults now, at ages 31, 30 and 18. The youngest, who is in the college application process, wants to be a cancer researcher. Mama couldn’t be prouder.

And me? Living in a renovated mill in Lowell Massachusetts in a community of artists. I am once again a practicing artist and also sell vintage clothing on the side (The House of Redemption). I continue to devote a fair amount of time to lung cancer advocacy and in addition to my blog here, I write for CUREtoday.

Best news of all? I feel great, absolutely fabulous.

And I think I’ll hang onto the video—even though it is out of date. It just makes me SO happy.

Hits and misses

From the inside looking out this morning

From the inside looking out Saturday morning

The blizzard rolled in right on schedule Friday, but fortunately, we were graced with a big dump of snow but never lost power; nature in all its glory is sometimes best appreciated from a snug environ.

I had my third infusion of pemetrexed/carboplatin on Thursday. As the last round turned out to be so manageable, we decided to ramp up the platinum a bit, and for the first 48 hours, I felt pretty good. However, yesterday I skipped my afternoon zofran and began ramping down on the dexamethasone as well. By early evening I was seriously nauseous, and experiencing some pretty intense heartburn and a headache. I took a compazine, and when that had no effect, added zofran and dexamethasone. Soon I was feeling better again–I can’t begin to imagine how difficult chemotherapy must have been before the advent of steroids and antiemitics. Thanks to an ambien, I was able to sleep, and hopefully today I can again back off on medication.

So—lots to share. I think I’ll start with the visit to the Avon Breast Center at MGH. After the concerning mammogram on Tuesday, a sterotactic biopsy was scheduled locally. However, I immediately contacted Dr. Shaw and asked about having a consult at MGH instead; if the situation required treatment, it only made sense to coordinate my care right from the start.

Well, the magical Dr. Shaw got me an appointment on Friday afternoon. Because of the impending storm, it needed to be cancelled, but they were able to squeeze me in Friday morning instead. Once there, I met with the surgeon, who performed an exam and immediately found a lump (that had been missed previously) in my left breast as well. And then I had some more mammograms done, this time using a 3D imaging machine. After a short wait, more close-ups on my right breast, and then an ultrasound of my left breast.

The conclusion: likely benign fibrocystic changes in the left breast and a 99.5% chance that the microcalcifications in the right breast represent non cancerous changes. So I won’t need to undergo a biopsy and instead will have a repeat mammogram at the Avon Breast Center in six months. The moral of this story would seem to be, whenever possible, (and particularly when your medical history is complicated), get yourself to a center with the best diagnostic apparatus available as well as the expertise to interpret those results.

So that was great, great news. A good thing too, as my scan prior to chemo on Wednesday was not quite as encouraging:  “Mixed treatment response with interval decreased groundglass opacity in the left lower lobe, though slightly increased let lower lobe consolidation and slightly increased mixed solid ground/glass opacities in the right upper lobe.

In addition, the results of the initial genetic sequencing of the ALK mutation are in (it remains to be seen if full genetic sequencing can be performed, as my biopsy  sample was quite small and will require a cell line to be grown in the lab—something that may or may not be possible). The secondary mutation that showed up post crizotinib (S1206Y) is nowhere to be seen. In its place is G1202A, also a missense mutation on the solvent front, but unfortunately one which confers a good deal of resistance to all ALK inhibitors. This will potentially limit treatment options, and the mixed treatment response may necessitate a change of course sooner rather than later.

I am focusing on the fact that except for the few days post chemo, I am stronger than I have been in months. In fact, although I still have a small amount of wheezing and an occasional cough, the copious amount of  nighttime sputum has disappeared. Hopefully the resolution of this troubling side effect correlates with the positive response. However, given the mixed response, I do wonder if there is a chance that the resolving groundglass opacity might have been an inflammatory response to the LDK378 (pneumonitis has been observed as a rare side effect in patients treated with crizotinib).

At any rate, there is no way to know and the important thing now is that I am feeling better. One more round of pemetrexed and carboplatin and then, unless a subsequent scans reveals significant progression, I will go on pemetrexed (Alimta) maintenance. One round, one week, one day at a time.