Tuesday, September 18, 2018

It’s been a rough year.

For those of you dear readers who have been following my ongoing health drama, you may recall that in December 2017, a new little brain met showed up, a known weakness of my 4 year awesome medicine, Xalkori. Rather than use the fancy SRS I had the previous 3 times this happened, we decided to take the leap and join a clinical trial of a new ROS1 inhibitor designed to include the brain in its field of treatment, as it is designed to cross the BBB.

You may recall the agonizing washout period required by the trial (and of questionable value) plus the added complication that my liver values shot into the stratosphere and forced me to be off all cancer treatment for an awful 18 days.

You may recall that I happily popped those first clinical trial pills (good old RXDX-101) on December 26, 2017.

You may recall that there was a huge clusterf&@$ in March when my brain MRI was misread and I was unceremoniously ejected from the trial without a follow up plan.

And you may recall that I fought my way back onto the trial, finally getting people to listen to me and re-evaluate that MRI.

Since then there has been an ongoing debate about those pesky old brain mets.

Settle in, this is a long story.

Every 8 weeks I have a battery of tests, per the clinical trial. And every 8 weeks a panel of experts convene to mull over my puzzling MRI results. The mets don’t really appear to be growing the way tumors would, but they haven’t been shrinking either. And there is quite a bit of swelling around each, which can either be a sign of tumor growth or radiation necrosis (sort of like scar tissue caused by the SRS treatments). Each time the experts have agreed to stay the course and see what the next scan reveals.

After my July scan, my oncologist called on a trusted colleague from Karmanos, asking him to meet with me and review my brain met history and puzzling scans. We meet in August and he suggests we gather more information about what we were actually dealing with, suggesting I get a PET scan of the brain. But wait, you ask, in all these years of cancer treatment, they have always said that PET scans don’t give enough detail of the brain to determine if there is cancer since so much of the brain lights up from basic activities of living. His suggestion to use a PET scan involves a clever bit of reverse engineering: if the spots in question have LESS than normal uptake, that would give us a clue that they were in fact dead tissue (meaning the spots are radiation necrosis).

So, I had my PET scan. But they actually just did a PET of my body, not the brain.

Ha ha ha. Of course.

They did the wrong scan.

Seriously.

The good news is that the PET of my body showed no increased uptake, meaning the clinical trial drug is doing just what it is supposed to be, and is effectively inhibiting the cancer in my body.

Let’s pause and appreciate this really good news.

Now back to the scheduling fiasco. They need to do a BRAIN specific PET scan, and the first available is on September 10. I take it.

My regularly scheduled August 31st MRI raised a few more eyebrows, in part because the radiation tech put actual measurements in the report (instead of the infuriatingly vague words like “enhanced” and “increasing”). They measured the met in the cerebellum as 2.4 cm, increased from 2.0 cm in the last scan. Well, this was a surprise to me, to see some actual significant numbers. When you are talking about the brain, 2.4 cm is into territory where you might need to make some serious moves. Specifically, brain surgery.

I spend the final holiday weekend of summer trying to soak up as much relaxation time with the family as possible. And trying not to think about a growing mass in my brain and the prospect of brain surgery.

My oncologist again connects me with his most trusted surgeon at Karmanos, who asks that I deliver the most recent MRI films to him on Tuesday so that he can get a look at what we are facing. I try to keep my wits while my daughter has a meltdown at drop off on the first day of school. I calculate how long it will take to get to the U of M, get my scans on disc, and get them to Karmanos and into the surgeon’s hands.

I successfully deliver the goods. (And my daughter loves school and her new teacher by day 2.)

Meanwhile, I am scared out of my mind, knowing that there is something growing in my brain, something big enough that they feel it needs to be surgically removed. I am told that if it isn’t causing symptoms yet, it will. And let me tell you, that if people keep asking if you are having any neurological symptoms, it’s really hard not to start wondering if maybe you ARE. Is my balance off? Why am I getting a headache? What is that pressure in my sinuses? I ended up calling into the hospital Saturday night because I had a headache and didn’t know how seriously I should be taking it. (She reassured me that the pain I was describing was not the sort of neurological symptoms that would warrant rushing to the ER.)

I am scheduled to have a consult with my fancy Karmanos neurosurgeon that Monday. He confirms that I am not having the troubling neurological symptoms that would warrant immediate action. He plans to take my case to the tumor board on Wednesday, and wants to know the status of that brain PET.

If you have been following this lengthy story with a calendar at your side, you will realize that my brain PET is scheduled for the next morning. “Is it possible for you to get me that scan so that I can review it before the tumor board meets on Wednesday?” Of course it is.

So I do the PET scan bright and early Tuesday morning, wait several hours for it to burn to disc, then head to Karmanos. I walk the disc to the front desk, and plead my case, reiterating that this NEEDS to be uploaded and available for my doctor by the end of the day, so that it is ready for the tumor board meeting. They assure me it will happen.

Wednesday passes without incident.

Thursday morning I get a call from my neurosurgeon’s PA, asking why I never delivered my PET scan.

Ha ha ha ha ha ha. You can’t make this stuff up.

She eventually tracks it down (it was still sitting at the front desk), and says that the tumor board discussed my case without the PET scan, and felt that even if it is 100% necrosis, it is just too big to leave sitting around. So, brain surgery it is, first week of October.

As a side note, I did eventually get that brain PET read, and this line was music to my ears: “sites identified in the MRI do not have distinct increased metabolic activity, in fact, metabolic activity is at or below the level of cerebral white matter.” Which means there is decent reason to believe that the drug is working in my brain, too, and the remaining spots on the MRI are just necrotic tissue.

Now I am on a cocktail of dexamethasone, trental, and vitamin E to try to bring down the edema before surgery.

In addition to the mind boggling logistical nightmare of having cancer (it really is a full time job), these past few weeks surprised me in how absolutely shaken-to-the-core terrified this made me. I thought I had developed a thicker skin after five years dealing with metastatic cancer, but the prospect of brain surgery really shook me up. There is that familiar, unsettling feeling as I look around at everyone acting so normal. Don't they know the whole world is being turned upside down?

My kiddos' responses were each so completely them.


  • (Eyes filled with terror) No Mama! I don’t want you to have surgery!!!


vs.


  • (With a casual shrug) It’s okay, I know they’ll be careful.


vs.


  • (Long pensive moment, eyebrows raised) Brain surgery. (Thinking, thinking) Well, these are trained professionals, right?


Now I am going through all that I do, trying to put plans into place to make sure our little ship keeps sailing even when I check out for several days/weeks.

This is a very long post. Well done, those of you that have made it this far. It has been an enormous amount for me to process and I am only really coming to terms with it now.

Wish me luck.

Friday, July 13, 2018

Meh.

I got the results from my every-8-week scans for the clinical trial, and the overall reaction is ... meh.

Things are not getting better, but they also are not getting significantly worse, at least not enough to kick me out of the trial. Which, in and of itself, is a good thing when dealing with metastatic cancer. "Not much worse" is good enough for a while.



So, I will try to string together another few months (hopefully more!) giving researchers more time, and trying to hang in there until some exciting new trials are back into action (I'm looking at you, TPX-0005!).

Crossing our fingers that we are not burying our heads in the sand and missing progression in our optimism.

-----

In other news, we had a wonderful trip to Minnesota visiting family and celebrating my parents' 50th wedding anniversary! The road trip there and back, the family party, meeting up with old friends, seeing friends get married, leisurely hours playing cards and working on puzzles, helping my mom with some decorating projects, playing with my baby nephew, and so many more things were absolutely perfect.
So many games!
Here's to more months, and more time where the biggest drama is on the chess board.

Tuesday, May 29, 2018

five.

So here we are. Five years. When I was diagnosed with metastatic lung cancer, the statistics said that my chances of living to see this day were less than 1%.

This is a sobering anniversary; I can’t help but think of all my friends who ran out of time. People who seemed to be managing treatment so well and then .... well, we know how fast the snake can turn. Why have I been so freakishly lucky in this horribly unlucky disease?

I took a stroll down memory lane to see how I wrote about this day over the past 5 years.

A cancer diagnosis inevitably leads to talk of a “bucket list.” I thought about this quite a bit when first diagnosed, but there wasn’t a whole lot that I hadn’t already done. I had been fortunate enough to travel internationally, live in several different places, experience all sort of wonderful adventures.

As I thought about mortality and time and what I wished for in this life, I realized that all I really wanted boiled down to three things.

  1. See my kids grow up
  2. Help Jason build our dream business
  3. Cure my cancer

I still have a long way to go on the first one, but I feel so fortunate to have gotten as many years as I have. When I was diagnosed, my hope was to live long enough to see our son start kindergarten. Now we are discussing middle school options. Unbelievable. So very grateful.

#2 on the bucket list is coming along well! Pointless has been up and running for almost 2 and a half years, adding on an additional space for the Pointless School of Improv after the first year. We still have many ideas of how we want the business to grow and things we would like to do with it, but it has been amazing being part of this process. When I stood on the stage for my curtain speech on opening night, I confessed that I didn’t actually think I would live to see the doors open. But I did!

The third item is humongous and audacious, but hey, dream big right? I have been amazingly fortunate to cross paths with two amazing women (yeah, I'm talking about you Lisa and Janet) who share my rare mutation, and who also made the bold decision that we needed to drive our cancer care and the research toward making our disease manageable instead of terminal. The three of us sowed the seeds of the ROS1ders, and in partnership with the Addario Lung Cancer Foundation and many more wonderful ROS1ders have developed the Global ROS1 Initiative.

These three goals are what have driven all of my decisions for the past 5 years. How’s that for singularity of focus! I suppose it would have been easier to say “I want to go to the Grand Canyon,” but I never did do things the easy way. Just ask my parents.

-----

It has been a lot, taking stock of these past 5 years. Trying to enumerate what I have been through, what my body has been through ....

  • 2 bronchoscopies
  • 6 cycles of a 3 chemo agents
  • 50 months of crizotinib
  • 3 sessions of SRS
  • 20 injections for bone mets
  • 1 clinical trial
  • 3 PET scans
  • 3 bone scans
  • 10 EKGs
  • 17 brain MRIs
  • 21 CT scans
  • 1,826 days (knowingly) living with lung cancer, and all the effects and side effects of cancer treatments and procedures.

But who’s counting.

-----

Five years is a significant milestone that deserved a significant gesture.

So I got a tattoo! Something borne with pain which left me forever changed. Quite fitting.

Our daughter wrote this on the family calendar.

It was my first tattoo so I didn’t know what to expect, but the artist was very patient with me. Jason, the kiddos and I designed the image to honor the 5 of us surviving these past 5 years, with each of us represented by our favorite color.



It didn’t hurt much, though I had a moment that morning where I thought to myself, “wait - why am I going to get poked by needles ON PURPOSE?”

I watched the tattoo artist do all the black outlining, then when he switched to colors he said he would start with the darkest one first. “That’s yours, Jason!” I said as I looked over at him.

Then all of a sudden, the past 5 years hit me, and tears ran down my face. I started thinking about all that Jason has had to deal with, always waiting for the next shoe to drop, always ready to take over when I feel unwell, always, always, always....

It had no idea that getting the tattoo would make me so emotional. As a friend said, “It is momentous for a reason.”

-----

We marked this anniversary with bowling, a tradition we started when I was first diagnosed, when I was too weak to actually bowl, but could sit and watch and be present with the family. I had been told to "make memories" for my children, so I did it in any way I could.

Strike dance!

Strike hug!

We had cake, because every special occasion deserves cake. There was only one image fitting such a momentous day.




My dear friend Meriah commissioned artist Jermaine Dickerson to create this family portrait for us, not long after I was diagnosed.

The 5 of us

We each ate our own head!

So here we are, five years. I never expected to see this milestone. And yet I cannot help but hope I will see more. I'm already dreaming about that next tattoo . . . .

Monday, May 14, 2018

Good enough

Thankfully my scans were much less of a roller coaster this time around. The consensus was that the brain mets are probably stable, so I can stay on the trial drug. Not quite as nice as a glowing report, but good enough. I'll take it, and I greatly appreciate that there was no drama.

Boring is just fine, thank you very much.

As the trial doc said, let's just try to keep stringing together months at a time until we hopefully get to a year. I know that's the drill for this metastatic life; just keep kicking the can down the road, going one step at a time, and before you know it (and if you are immensely lucky) you realize 5 years is just around the corner.

So let's just keep kicking!

Thursday, March 22, 2018

The Whole Long Story

I don't even know where to start. The past 4 days have been completely absurd.

As of Monday morning, I was out of the clinical trial because of progression in the brain, according to the MRI. The lovely ROS1 experts that I emailed asked me (repeatedly) to make sure this was definitely progression, and not a response to previous SRS treatment. I asked this question several times, but was repeatedly reassured that it was, in fact, progression. You may recall from my last post that I reached out to my rad onc to confirm that this was progression, as he was the person who has followed my brain MRIs very closely over the past 3 years and has performed all the SRS. He said he would ASAP, but was travelling and wouldn't be able to until Tuesday. 

I was sent home Monday afternoon without a plan, but an appointment with my old oncologist on Tuesday (which I had to insist on getting, rather than waiting several weeks for her next available appointment). 

I spend Monday afternoon reaching out to all the hospitals in Michigan that run the trial for Lorlatinib (the next ROS1 inhibitor that is in the Expanded Access Program). I had a very frustrating conversation with the nurse fielding the calls about the trial:
"You have to have ALK for this trial. It says right here it is only for patients with ALK or a rossey rearrangement."
"Yes. That says ROS1. That's what I have."
She also told me that the washout is 4 weeks long, which is not correct at all. 

Tuesday morning I meet with my oncologist who acts quite alarmed at the MRI results, says I need to take steroids and I shouldn’t drive. She even suggests whole brain radiation as an option. I am pretty stunned by this, and tell her that I want to pursue the Lorlatinib trial. She has a contact at Karmanos who runs the trial, and is able to get me an appointment on Thursday afternoon. 

I spend the rest of Tuesday scrambling to collect all of my records that I will need to hand deliver to Karmanos on Thursday. I watch the person working at imaging’s jaw drop when she opens my file. Almost 5 years of treating metastatic lung cancer means I have generated A LOT of CT, PET, and MRI images. 

I download the Lyft app and try to figure out how I am going to do everything I need to do if I can’t drive. I start on steroids, which are not fun (my body aches, I’m exhausted but can’t sleep). 

Late Tuesday afternoon I get a message from my rad onc saying that he and neuro-oncology have reviewed the MRI and say there is no progression, just response to treatment/SRS. 

THERE IS NO EVIDENCE OF PROGRESSION. 

What?!? 

I quickly contact the trial doctor, my oncologist, and the super amazing trial coordinator. I get a note back from the trial doctor that he will try to get me back in the trial, and that the trial coordinator will contact me on Wednesday to set everything up. 

Wednesday morning I send an email to the trial coordinator asking if there is any update. She replies quickly and tells me that there are lots of emails going around but there is nothing official. 

The hours pass…. 

I hang out at home since I am not allowed to drive. I order things from Amazon since I cannot run errands. I line up childcare for the kids on Thursday, since Jason and I might have to go to Karmanos to try to get into the new trial if they cannot undo my dismissal from the entrectinib trial. 

I send the trial coordinator another note, asking if there is any more info. She quickly replies that my doctors are still trying to make a decision. 

Make a decision? I thought it was already decided? 

I reply to her that, if my voice means anything in this decision, I feel very strongly that I should be given more time on the trail. She said she will make sure the trial doctor understands this. 

By now it is after 3 pm and I’m getting nervous that the end of the business day is coming and I still don’t know what is happening. I contact my rad onc again, asking him to please contact the trial doctor since there seems to be some misunderstanding about my MRI. 

I receive a note back that my lovely rad onc has just personally sat down with the trial doctor and walked him through my entire history of brain mets and SRS treatment, slide by slide, MRI by MRI. (I have been going to him for 3 years for brain met monitoring and 3 SRS treatments, and have MRIs every 2-3 months. This is a huge job.) 

Then my phone rings, and it is the trial doctor. He tells me they are putting me back on the trial, and that the trial coordinator will set up an appointment for me to come in Thursday morning to pick up my pills. He says that I don’t need to have driving restrictions and I can taper off the steroids. He didn’t realize that I had had all those spots treated with SRS, and there were different styles of machines doing the various MRIs, so it looked like lots of progression to him. We discuss the Karmanos appointment, and we decide it is still worth going because I will likely need Lorlatinib at some point, and it seems smart to me to get myself into the system and meet the trial doctor now that I have the chance. 

The wonderful trial coordinator emails me moments later and says to expect her call in a few minutes. She calls right on time, tells me she had already contacted the pharmacy to tell them not to throw away my pills (the thought that they would just throw away $10k+ pills is horrifying – but that’s a post for another day). She gets all my appointments for the next morning put together in record time. She is wonderful. 

Thursday morning I go in, get blood work, officially get back on the trial and I TAKE MY PILLS! 




I grab a quick lunch and head to Detroit for my 1 pm appointment at Karmanos. When I arrive to check in I am told that my appointment has been cancelled. 

O. M. G. 

I ask if there is any way I can get in to see the doctor, even briefly. I have already sent my paper records over and have the image discs in my hands, I filled out the whole patient history in their online system, and have submitted everything. I dotted all my Is and crossed all my Ts. Can’t they do something? I’m willing to wait. 

So wait I do. 

Finally, at 4:30 pm I get to see the doctor. She explains that my oncologist had contacted her and said that she needed to fit me in because this was a very pressing situation, so the Karmanos doctor agreed. When my oncologist found out I was back in the trial, she called Karmanos and said I wouldn’t need the appointment. This all makes sense, but wow, after the run around I had been getting, it was icing on the cake. 

We had a brief talk about the Lorlatinib trial, if I was likely to qualify (it seems likely that I would, but she is going to confirm that they allow CNS only progression, and I asked if they have parameters for minimum lesion size). I asked if she has ever treated a ROS1 patient before. She has treated 5 which is decent I suppose. She seemed fairly well versed in which drugs potentially work for ROS1, even mentioning brigantinib’s pre-clinical findings. She wasn’t aware of TPX-0005 or which acquired resistance mechanisms were the common and challenging ones for ROS1 (“you’re teaching me!” – I do wish doctors didn’t seem so surprised that a patient knows something). 

So, I finally finish up at nearly 5 and text Jason that I am just leaving. I had thought I would be back in time to pick up the kids from school, but obviously that didn’t happen, so he had already had to leave work and run the kids around all afternoon. He had to be back to teach at class at 7 pm, so I was keeping an eye on the time as I was driving to give him an update (traffic made the trip home much slower). But then both my phone and backup charger decided they were just done with all of this and punked out. Frankly, I don’t blame them. 

But I got home and Jason got to class and the kids got fed and I got my drugs, so all's well that ends well, I suppose. 

Though, I find the events of this week incredibly disconcerting. I know I don't have a vanilla cancer. I know that ROS1 is very rare and that most centers only have a handful - at most - of ROS1 patients. I know that I was the first ROS1 patient at the U of Michigan. I know that we are in uncharted territory with my treatment path – approaching 5 years with metastatic lung cancer - so they are learning as they go. But I think what bugs me is that they don’t realize that a patient who has been living with this for 5 year has probably learned a thing or two.

I have been playing this chess game for a long time now. I know that my next brain MRI could very well show actual progression, and I will be right back where I am now. But if I could possibly get another 6 months or more on this drug before I have to move on to another, I cannot sacrifice this knight carelessly. I'm hoping to keep playing this game for a long time.

Monday, March 19, 2018

Bad-A$$ Birthday

I started off my birthday this morning in the most bad-a$$ way possible - by getting kicked out of my clinical trial. Yes, that’s right, early this morning, as I waited to get my blood drawn, my MRI results were released to my Patient Portal, and with a pleasant little “ding” I discovered that my fancy new drug has not been living up to the hype, and the cancer has progressed in my brain. I’m still kinda hazy on the details, as the report was uncharacteristically vague; no actual measurements or anything, almost a poetic take on MRI reading. But, nonetheless, I am kicked off the trial, the remaining pills were confiscated, and I was sent on my way. No plan, just set adrift.

I have an appointment with my old oncologist tomorrow; they initially said her next available appointment was in APRIL, so I used my bad-a$$ Birthday Powers and helped them find one much sooner.

I sent some bad-a$$ emails to some wonderful ROS1 experts, who sent lighting fast replies (before I even got called in to see my trial doctor) with thoughts for potential next steps and caveats. I also emailed my rad onc who lived up to his title and agreed to review my MRI and help me come up with a bad-a$$ plan. I sent bad-a$$ emails and left righteous voicemails to the Lorlatinib trial sites in Detroit so I can get the bad-a$$ ball rolling on my potential next treatment plan.

I was not bad-a$$ enough to select “Death By Chocolate” for my birthday cake. I thought “Chocolate Spring” sounded more auspicious.



I played a bad-A$$ game of Skip-Bo with the fam.



Forty-two. The meaning of life achieved. Still hoping for more bad-a$$ trips around the sun.

Thursday, February 01, 2018

Good-ish

I was surprised and a little embarrassed to see that I have my every-other-week clinical trial checkup on Monday, meaning it has been almost two weeks since I had my first scans on this trial and I still haven’t written an update. Well, patient reader, in a nutshell my scans were good-ish. The lungs and body appear unchanged, and while there were no new spots on the brain, the New Guy (the brain met that was my ticket into the StarTrk-2 trial) looked mostly the same but a little bit rounder with some edema. Since we don’t know what happened during the agonizing 18 days that I was off all treatment, letting the cancer grow completely unfettered, the doc is calling it stable. And stable is good. The next scans will give us a better sense of how this drug will work on my cancer.

Guess when the next scans are - my birthday. I’m going to take that as a good omen.

I’m coping okay with the new drug, entrectinib. I had a whole laundry list of side effects to tell my trial doctor about: 

  • Sleep 12 hrs/night
  • Numb/tingling mouth 
  • Feel slightly off balance
  • Drugged feeling about 2 hours post dosage
  • Scatterbrained, lose train of thought when interrupted
  • Have to concentrate harder to follow conversations
  • Very sensitive skin, prickly, pins and needles feeling
  • Sometime struggle to find the right word

They designed this drug to get into the brain, and the side effects sure feel like it does!

The sensory stuff is either getting less or I am getting used to it. The main struggles now are the sleepiness (even after 12 hours of sleep!) and losing my train of thought if I get distracted. I’m developing coping mechanisms, like making lists, and using even more post-it notes than I did before so I have reminders everywhere. I am also teaching my children that they have to take turns when they want my attention instead of just all talking at once!

Do you see what is absent from the list of side effects? ANYTHING to do with GI issues!! I didn’t realize how miserable I was with my stomach issues on my old magic medicine Xalkori. I dreaded eating every day, and as a stay-at-home-mom, so much of my life centered around planning food, buying food, preparing food, and cleaning up food. We had more dinners of canned soup or takeout than I would like to admit, just because I couldn’t stand the look or smell of cooking food.

But now I LOVE TO EAT!! I look forward to eating! I love the smell of food! Food is wonderful!

Oh in other news, both of my daughters tested positive for Influenza A last week! We were totally floored when they were positive. They had some sniffles, a cough, and a slight fever and we took them in just because of me, since I am “high risk” and wanted to know what I was dealing with. I guess we were lucky that they got it so very mildly. I got to add Tamiflu to my drug cocktail which was a total blast. Thankfully I never caught the bug.

So, if you haven’t heard from me in a while, that’s what has been going on in my world. All in all, things are good

-ish.