Saturday, February 16, 2019

Clinical Trial Lifestyle

I successfully passed all the tests and got accepted into the study! There is a weird sweet spot you have to hit in order to qualify for a clinical trial. If you don't have enough cancer in your body, you will not qualify because you do not have "measurable disease." If  you have too much, you will be too unwell to be considered as a candidate. I hit the goldilocks level of cancer! Yay for having measurable disease?!? What a strange thing to wish for.

I took the first dose on Thursday and now I just hope (and hope and hope) that it works.


I got to see both of the Wizards on my trip to Oz (my ruby slippers were a hit), and as usual they impressed me with their intelligence and compassion. They both have the remarkable ability to treat a patient as an equal partner in their care, something I have rarely found elsewhere. I love that they take the time to explain the science behind the treatments. I asked what I could do if this doesn’t work, and he explained that a chemo/immunotherapy combo (carboplatin, pemetrexed, and pembrolizumab) would be the next step. While most drugs need to physically reach the cancer (a challenge with brain mets), immunotherapy just has to stimulate the body. Well, here’s hoping I don’t have to find out for a while.

So now I set about trying to figure out the logistics of my new life, as an out of state clinical trial patient. With appointments once per week for the first two months, this is going to get complicated.

I have contacted several foundations to help shoulder the cost of all of this travel.

Here is a summary of what I have found (hopefully this will help someone else going through this). All of the folks I have spoken to in these organizations have been incredibly kind and helpful, even the ones that didn’t work out for me.

Air Charity Network
https://aircharitynetwork.org/request-a-flight/
This is a collective of independent pilots who will fly patients for treatment.
They need at least 7 days to arrange the flight.
Challenge: small planes can only fly about 250 miles, making longer trips (like mine) impossible.

Lifeline Pilots
https://lifelinepilots.org/
Independent pilots.
Challenge: same as above

Corporate Angels Network
http://www.corpangelnetwork.org/
This organization works with corporations to let patients fly along on their private planes for free.
Challenge: apparently no one is flying between Detroit and Denver for business.

Mercy Medical Angles
https://mercymedical.org/
They work with commercial airlines to give unsold seats to patients traveling for healthcare. They will provide a maximum of 3 flights per year, with at most 1 flight per month.
Challenge: they require a ton of paperwork (of the “prove you are poor enough” variety), and need at least 21 days advance notice. I am in the process of completing this.

Lazarex Cancer Foundation
https://www.lazarex.org/
Their focus is on helping patients overcome the financial burdens involved in joining a clinical trial. Exciting that they say they even help with the other costs, like hotels and taxis to and from the appointments.
Challenge: not sure yet, still in the process of completing paperwork.


In the mean time, I have had a few wonderful people reach out to help with flights. Emily Bennett Taylor, stage IV lung cancer survivor, offered to buy me a plane ticket to Colorado. (If you have never read her story, you should. It is amazing. https://embenkickscancer.wordpress.com/) She said that a lot of people helped her during her treatments, and she wanted to pass along the kindness.

And then! The awesome person and excellent musician Zoe Keating gave me some of her miles to help with flights. Zoe and I became friends when her husband was going through treatment for stage IV lung cancer. He has since passed away. Cruel disease, this is.

I’ve met some of the most amazing people because of this horrible diagnosis. It’s the club no one wants to join, as they say.

Monday, February 11, 2019

Enough

We returned from our marvelous vacation last night, the first time the five of us have taken a vacation together (please, please don’t say it will be the last).

My high point of the trip was visiting the beach where Jason and I got married, and introducing our children to the ocean.


I wanted to catch that moment and hold onto it forever.

If I stayed here all day, all week, all month, would it be enough?

When I was diagnosed, I hoped I would live long enough to see my son start kindergarten.

If only I could stay alive long enough....

Then I hoped to live to see my girls enter kindergarten.

Stay alive long enough....

Now I hope to see my son into middle school.

But I’ve realized it will never be enough.

Even if I make it another 11 years so they all become adults, I will still want more.

Being so very aware of mortality is painful and poignant and achingly nostalgic. There will never be enough of this life.

So I cling to the sunshine and memories from our glorious week and let those carry me into my terrifyingly hopeful week of testing and (if all goes well) experimental cancer treatments. Almost overwhelming, but fortune favors the bold, as they say.

I have a few good luck charms from our vacation traveling with me.



And then, these showed up on my porch this morning, from my dear friend Lily. Ruby slippers for my trip to Oz.



Sunday, February 03, 2019

Last Great Hope

When I was first diagnosed with metastatic lung cancer in 2013, the situation was dire. Cancer has spread extensively throughout my body. The only option offered to me for treatment was chemotherapy, a triplet of chemicals which had a 1/3 chance of reducing the cancer, and a 1/3 chance of holding it stable. The last 1/3 was left up to my imagination. Even with treatment, they expected I had about 8 months to live.

Thankfully, fortune smiled upon me and we discovered that my cancer was driven by a ROS1 mutation. This meant that we had a whole new line of attack: we could try to stop the cancer right at the source.

Since November of 2013 I have been taking daily pills that target my ROS1 mutation: Xalkori for 4 years (which worked like a charm, except for a few pesky brain mets, the known weakness of Xalkori). Next were the 11 bumpy months on entrectinib, where slight changes in the brain mets left my doctors scratching their heads after each MRI. Progression vs radiation necrosis, so hard to tell. Then Lorlatinib which didn’t seem to do much of anything.

That brings me to where I am now: TPX. My Last Great Hope.

All of your star-wishing (and a fair bit of persistence) must have worked, because I have secured a spot in the clinical trial! That is, assuming I pass a battery of tests on February 12. And I won’t really believe it until I take the first pill.

I know that I am not completely out of options if this drug fails me, but it brings me to the end of the line for ROS1 targeted drugs. There have been great advances in immunotherapy since my diagnosis, so there are more thing to try. But I’m sure hanging a lot of hope on TPX.

So, wish me luck passing the tests to gain entry to the trial, and then hope it works!

But first - the family is headed to California to make some memories!! Cancer needs to take a back seat for a week. This is family time!

Thursday, January 24, 2019

Return to Oz

I woke up last Wednesday to a phone call from my oncologist confirming that the MRI I had just had showed that, while it was slight, my brain mets are progressing. My fancy new TKI (tyrosine kinase inhibitor - a drug targeted to my ROS1 mutation), Lorlatinib, was not holding my cancer in check. The next best chance for me was to get into a trial for the newest TKI in development, TPX-0005 (it is actually far enough along now in development that it has its generic name, repotrectinib, but I fell in love with it when it was just TPX, so it will always be TPX to me). The nearest site for this trial is at the University of Colorado, a powerhouse for ROS1 research. My longtime readers may recall that back in 2014 I took a trip there, my journey to Oz to meet the Wizards so that I could learn more about my newfound mutation.

With all of this on my mind, I got up and starting figuring out how to stay alive.

Actually, that’s not true. The first thing I did was get back in bed and get under the covers. Sometimes, this is a lot to take in.

THEN I got up, and called to get a copy of my latest MRI. My oncologist is wonderfully thorough, and asked that I take a disc to my surgeon at Karmanos, in case he had any other thoughts or ideas. I collected my disc and delivered it to Karmanos.

I actually managed to wait a full 24 hours before contacting the Wizards (who I have come to know in the years since my visit to Oz, because of my work with the ROS1ders). I knew my oncologist was taking care of setting up the trial for me and I was trying to let things happen the way they are supposed to ... but then I had to email them. This is my survival, after all.

And I got Out of Office replies from both! Crap crap crap. That is probably why my oncologist hadn’t given me an update yet.

And then, a few moments later, a magical reply came from one of the Wizards. He connected me with the people who do the enrollment for the trial and gave me some warnings for where things can get tripped up.

The next morning I was on the phone with the wonderful trial coordinator, my Glinda, going through part 1 of the trial consenting. One tricky part of this trial is that they want a tumor sample. No problem for me, I thought, I just had a chunk of tumor removed from my cerebellum. So I signed the consent to give Glinda permission to collect my tumor sample and get me ready to consent into the trial.

All signs are pointing to yes! I start busying myself figuring out how to manage all the flights I will need to take (anyone used Angel Flights?) and accommodations in Colorado.

However, I keep saying to myself, I’ll believe I’m in the trial when I swallow the first pill. You may recall when I literally had the pills in my hand and was not allowed in the entrectinib trial? Clinical trials are capricious beasts.

Unfortunately, tracking down my tissue has proven to be more difficult than I expected. I told her that my surgery was done at Karmanos, but my main hospital is the University of Michigan. She contacted them, but Karmanos said that they sent my tissue off for NGS (next generation sequencing, to see if I had acquired new mutations or if it was still just ROS1. Still just ROS1, by the way). She assured me that she can still collect it, but clearly it is becoming more time consuming.

AND THEN

Tuesday night I get an email from one of the Wizards saying that all of the trial spots are taken.

%#*%~%#?!

Total panic.

I’ve had my heart set on TPX ever since the summer of 2018 when my oncologist tested my cancer cells against all the current TKIs and found them most reactive to TPX.

I belong in this trial.

I reach out to my ROS1 sistas, Janet and Lisa (who I guess become the Scarecrow and Tinman in my analogy?). I get an appropriate string of swearing when I tell the news. Then they reach out to their connections to get the behind-the-scenes scoop about the trial. Their folks reply at lightning speed encouraging me to get on the waitlist; more spots are coming.

My oncologist confirms that he feels it is safe to wait a few weeks.

So now I wait. And dream of Oz.

When I’m anxious, I knit. Let’s just say I’ve been going through a lot of yarn.

My latest is a collection of octopus toilet paper cozies. I made one, then the kiddos wanted one in each of our colors. Then they wanted hats for them. M is excited that it matched the style of hat I made for her. The two in the back still need their hats. They will be done soon, trust me.

If you are wishing on stars for me, wish that I get a spot in the TPX trial, and that my cells were correctly predicting that this will be the drug that controls my cancer.

Wednesday, December 19, 2018

California Dreamin’

Jason and I got married in a perfect, tiny ceremony on the beach in San Clemente, California, then honeymooned in nearby San Diego. On each anniversary, we show our kids the wedding video, and every year they ask if they could see where we got married.

Our little crew has never been on a family vacation. Yes, we road trip to Minnesota every summer to see my parents, and while I find that wonderfully relaxing, it’s not really a family vacation.

There is an improv festival coming up in San Diego, and the League of Pointless Improvisers (the Pointless cast) got accepted to perform in it.

...do you see where I am going with this?

These past few months have been rough. Frankly, these past 5.5 years have been hard, but the last few months have been particularly challenging. And the road forward remains unclear.

So we decided, come hell or high water, we are going to California!

Jason pointed out to me that Disneyland and LEGOLAND are in California, too. I’m well aware what a challenging time this has been for Jason and I, but I’d be a fool if I didn’t recognize how hard this has been on the kiddos, too. They deserve some fun.



I spent today anxiously waiting for my MRI results, the first MRI after 6 weeks on my fancy new TKI drug, Lorlatinib. It is my third TKI, and I’d be lying if I said I wasn’t getting nervous that I’m on #3 of the 4 that have been developed for ROS1 (and #4 is only up to phase 1 in clinical trials). I called the cancer center and left a message, saying I was waiting for results. They said they would call me back when my doctor was available.

So 2 hours later I called again (I am bad at waiting), and they said they know I called, and they will call me back.

An hour later I just about jumped out of my skin when my phone rang. It was a nurse saying that my doctor would call me tonight, after he finished in clinic. That sounded terribly ominous, and I was shaking so much I felt like I could barely stand.

Finally, tonight, my doctor called.

Frustratingly, we are back in the vague land of “slight enhancements”. My doctor feels (and I agree) that it is too soon to make a call whether or not this drug is working for me, especially with such vague results, so I am staying on the drug and we are rescanning in 4 weeks. Back on the emotional rollercoaster. This is exhausting.

But we are going to California, dammit! A week to forget about all of this and just be together! Fun, family memories, and adventures await!

Sunday, December 09, 2018

Pause

I am now 9 weeks post brain surgery on my cerebellum.
And 1.5 weeks post targeted radiation to my cerebellum.
And 4 weeks post-entry into my second clinical trial, the EAP for Lorlatinib, which we hope will control (dare we say shrink?) the metastases in my brain.

Right now, we are in a very pleasant phase I am calling ...

The Pause.

I don’t have another doctor’s appointment until my MRI on December 17, so until that time I am going to assume that all of these treatments have done what they were supposed to do, that my new clinical trial med Lorlatinib is holding my cancer at bay, and all I have to deal with are some pesky side effects.

I’ll take it.

In the mean time, I am enjoying trying to get back to some basic level of fitness (brain surgery followed by radiation really knocked me down, and I find myself huffing and puffing just from walking fast). And enjoying movie nights with my kiddos, planning for the holidays, soaking up laughs at Pointless, complaining about my new diet*, and appreciating feeling relatively well. I’m sure hoping for a lot of boring news from the scan and lots of boring months to follow. These past two months have been the hardest two of the whole 5.5 years (and counting!) that I’ve been in treatment for metastatic lung cancer. Boring sounds really good to me!



*one of the side effects of the new drug is that it makes your cholesterol and triglycerides go astronomically high. I am currently on a low-carb diet to see if I can get them to come down. I never knew I loved carbs so much. Or not having to think about what I can and cannot eat.

Monday, November 19, 2018

Radiating My Brain

I have completed treatment 2 of 5 for my targeted brain radiation. You may recall that, since there WAS living tumor in the section they removed from my cerebellum, we decided to radiate the perimeter around what was removed, in case there were any tumor cells there.

Well, let me just say that

Radiation

Is

Kicking

My

Butt.

Check out the imprint the super-tight mask leaves on my face.

It wears off after about an hour.
I was mentally prepared to feel wrecked after surgery; I was not so prepared for this. In addition to the exhaustion, I have had awful headaches and nausea. I talked to my Rad Onc about this and he said it was from brain swelling, and prescribed a course of steroids. Yay, more steroids. But if they stop the headaches, I’m happy to take them.

The upside of spending my life on the couch is that I have been doing projects like teaching my kids how to use the sewing machine.






It’s still Lung Cancer Awareness Month, and I still have lung cancer, and I’m still raising money to fund research specifically focused on my rare ROS1 mutation. I’m trying to reach $8,000 by the end of the month. Here’s the link: https://www.supportalcf.org/ros1/ToriTomalia