Category Archives: ALK+, progression

While sleeping

I just got back from a week in California, compliments of my friends Wendy and Cristina. More details and photos to follow. But first this.

On the fifth night I dreamt of a black and white woodpecker with wingtips burned to ash. The next morning I was having coffee with Wendy at the table when I looked out the window to where a bird was pulling suet from a feeder. It was a Hairy Woodpecker, just like the one in my dream.

On night six I had a dream that I was dancing. I felt like Shirley Temple in my full skirted dress; jumping and leaping and twirling about. Again and again people would stop to tell me what an amazing dancer I was.

In my waking state I am far from confident per my ability to dance; lack of coordination coupled with an inability to follow direction and a sense of rhythm that is best described as uniquely mine. I dance alone or in the company of alcohol or some other source of disinhibition.

To be able to dance like that in my dreams is almost as good as flying. Perhaps my wings have been singed (after all, I have been flying rather close to the sun) but who’s to say they are not yet airworthy.

Dream on.

xo

Row, row, row the boat

I am adrift. Not emotionally, not metaphorically–really, truly at sea.

First, my housing situation; non tenable in all respects and something that has weighed heavily upon my mind for weeks now. There will be a solution but at the moment, it is not obvious.

And then, more importantly, my health.

Lungs and Airways: The patient is status post left lower lobectomy. There is essentially stable ground glass opacity in the left upper lobe on image 64, measures 3.7 cm, measured 3.64 cm in November 2018 . There is essentially stable more confluent consolidative opacity in the LEFT lower lung, along the diaphragm, best seen on image 96. Multiple other ground glass and solid nodular opacities are essentially stable, for example in the RIGHT upper lobe on image 46, 51, LEFT lung on images 51, and 89.

As reassuring as my last scan was, the fact remains that I have multiple areas of cancer in both lungs. And, at long last, some information from the biopsy on 12/14/18.

Essentially, in addition to G1202R, I have now acquired two more secondary mutations, both of which are conferring resistance by compromising the ability of lorlatinib to bind. G1269A and S1206—I am not certain of the letter following 6 on the second mutation but it is no longer Y. More importantly, neither of these newly acquired mutations is actionable. As in, there is no next therapy.

Adrift without a paddle, as it were. Or maybe a more apt metaphor is that I am in possession of one paddle yet, but it is busted. And that would be lorlatinib.

I am still expressing ALK, so Alice is hopeful that lorlatinib continues to confer partial resistance. As she put it, the cancer is working very hard to get around it. My job, in a nutshell, is to hold on (stay alive) until a 4th generation ALK inhibitor is developed.

Big sigh. This is the time to think possible not probable. And also to not only get that good china out, but to use it at every damn meal.

xo


Bits of me: an update

I got a call from Alice (Dr. Shaw) last week with some news per my molecular testing. As luck would have it, I was trying out a new edible (delicious, weed flavored lollie) and was starting to feel the effects. I probably should have left my phone untouched but when Alice calls, you pick up.

So I did. And…I was pretty flipping stoned so trying to make sense of what she was telling me (while also doing my darnedest to maintain decorum) took a lot of effort. Going over the conversation in my mind the next day, I wasn’t quite sure I’d understood correctly and so I emailed her, fessing up as to my state of mind at that time and asking for clarification.

I didn’t hear back from her until Monday. In the meantime I had requested that she prescribe an antibiotic as my left lung has been really boggy and my energy level exceptionally low. Obviously it could be my cancer but I was hoping that my symptoms might represent a concurrent infection. So Alice called to discuss and this also provided that opportunity for clarification.

I heard what I thought I heard, which is basically this. Evidently my biopsy was contracted and paid for by the sponsor of my trial, which meant that they also ‘owned’ one of the core samples. Another went to MGH, another to research, another was used to attempt a mouse model of my cancer.

As my tumor is highly lepidic (lace like in its spread) it is difficult to biopsy. And, as it turned out, the samples that Alice had access to actually had no viable cancer cells for molecular testing. So she asked the sponsor if she could have some of me back and they–graciously–said yes.

The hope is that this last sample will hold the holy grail and will provide some information useful to guiding my next treatment option.

If it doesn’t, we might have to consider another biopsy. That is, unless my friend the mouse (sorry little guy, I had no idea) grows my tumor, in which case the mouse will be biopsied.

In the meantime we must rely on how I am feeling in combination with a scan two weeks hence in order to assess the speed at which my cancer seems to be progressing. Given the change in histology, there is the distinct possibility that it will now be more aggressive. I hoped there might be a silver lining here, as more aggressive cancers are typically more responsive to chemotherapy, but Alice did not feel that would be true in my case 😦 Always trying to look on the bright side, I am.

Oh–and at the end of our conversation on Monday Alice asked, on behalf of one of her other patients, about the steps required to apply for a medical marijuana card. Discussing this all later with my nurse practitioner (who found the entire episode highly amusing) I told her that given the fact I was able to help Alice, we could consider my personal research as community service. 😉

And, on another bright note, I am feeling significantly better–I believe the antibiotic was exactly what I needed.

xo

ps: check out this great Health Stories Project article about my friend and fierce fellow advocate Andrea Borondy Kitts. I get to play a small cameo 🙂

Perfect alignment

The first thing I saw upon opening my eyes today was the planet Mars. Cold little fire in the early morning sky.

‘Hey Mars’, I said. ‘Save me.’ To which Mars calmly replied: ‘I got nothing.’

Honestly, I was somewhat taken aback. But as I stared across the millions of miles of space, I saw not Mars but the light of the Sun, reflected. And I thought about the other side of this star-like planet, now sheathed in darkness. A jet passed high above. I pictured the passengers inside, people on their way somewhere. So far and yet so close as well.

A bird flew past the window; fast. And then some more, buffeted by the breeze. Mars was growing dimmer, and I had to concentrate to keep it in focus. Two more jets, their contrails now lit by the rising Sun. Seagulls, playfully riding the thermals.

All this I could see. Yet the air was also filled with microorganisms, invisible to the eye but very much part of this marvelous froth of life. I felt this overwhelming connection to everything and nothing, as nothing was actually something. And I understood with a clarity that felt like pure joy that even when I was no longer me, life would go on.

At last glance, the bright planet was obscured by daylight. Far, far away. There, but not there.

Thanks for nothing Mars 😉

Where do we go from here

inked

Prior to my biopsy, this mystery mark was made on my left shoulder. Not certain as to the significance, but hopefully it aided them in getting the right (make that left) side of me.

Aside from that, I am left with two tiny entry points high on my left breast as well as parallel tracks on my left cheek—a red mark from lying face down on top of the oxygen tubes for more than four hours.

Unlike my previous biopsies (there is a benefit to scar tissue), my lung did not partially collapse this time. Diane was able to take me back home with her with the caution that I was to have no alcohol. Therefore, I only had a small glass of wine that evening 😉

What I know thus far is that they were able to get adequate tissue, including a sample for the sponsor of my trial (a token of appreciation). Over the next four weeks, results of genetic testing should start trickling in. This is the watch and wait part of cancer.

Alice called me yesterday (as well as once the night of the biopsy and she also came to see me twice on the day of—goddess that she is). This was a CT assisted biopsy and the surgeon/radiologist who performed the procedure is  also the radiologist who reads my scans, so he is extraordinarily familiar with my body/cancer. He told Alice that the tumor around my heart (which they did not biopsy–too proximal) has grown very little and that the tissue that they did sample–along the chest wall–is growing rather slowly. She feels radiation may be an option there but not for the cancer hugging my heart. 

Aside from that, there is nothing concrete to discuss yet. I am optimistic, she is cautiously so. 

It really is pull the rabbit out of the hat time. And as important as the magician (Alice) is, I am focused on that rabbit.

Holding it together; each other

*A hug is a form of endearment, universal in human communities, in which two or more people put their arms around the neck, back, or waist of one another and hold each other closely. If more than two persons are involved, it is referred to as a group hug.

The origins of the word are unknown but two theories exist. The first is that the verb “hug” (first used in the 1560s) could be related to the Old Norse word hugga, which meant to comfort. The second theory is that the word is related to the German word hegen which means to foster or cherish, and originally meant to enclose with a hedge.[1]

*Thank you Wikipedia 🙂

And I hope all of you felt the power of that group hug just as clearly as I did.

Because really, there is nothing quite like a hug. Akin to the word ok—it doesn’t overpromise. Unlike a kiss, which suggests greater intimacy, a hug can happen anywhere, anytime, and between total strangers. And like ok–it can soothe, calm, provide momentary comfort.

Most importantly, it reaffirms our connection to others, reminding us that we are in fact not alone.

And that’s why it had to be a group hug. I got squeezed but I was squeezing back hard. I know I’m not the only one going through a tough time right now. Lung Cancer is a ruthless disease–those sucky survival stats are not just for show. And even though those of us with a targetable mutation have seen a dramatic increase in five year survival rates, it’s like playing poker. There are a limited number of cards in this deck and once they’ve all been dealt it’s a whole different game.

So, my tribe, my fellow travelers. Let’s hold each other tight.

In serious need of some mojo

Plum out of that good stuff.

At the moment, my biopsy is three weeks away. Not so far really and yet also not close enough. Nebulosity. The in between. And for someone who is information driven (that would be me), not a lot of purchase.

I have the best oncologist in the world. There is no doubt she will come up with something but there is also no denying my options are limited. That pesky G1202R mutation that I acquired while on ceritinib has me backed into a corner. Fortunately lorlatinib overcame that particular resistance mechanism.

It was heady stuff; feeling good, and I had a mighty good run. But I also got a little carried away as I allowed myself to believe that maybe, just maybe, I was cured.

Yep. That was fun while it lasted. But now I’m ready to rumble, so to speak.

In the meantime, I am grateful for my formidable group of friends. After my last blog about the over the top copay for Advair, I received lots of offers for assistance. Linda S. got right on it and overnighted me an inhaler. Mucho mucho gracias darling–I am breathing easier because of it. And thank you to the rest of you as well.

But back to that missing mojo. It has been my experience that the best way to refresh that particular feeling is a giant group hug.

So lean in y’all. And squeeze extra tight.

xo