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.

8 comments:

TeacherPatti said...

Holy Toledo! Wow! I don't understand why the first doctor thought it was progression? If he/she hadn't made that mistake then none of this would have happened, right?

Tori Tomalia said...

When a brain met has been treated with SRS, it can go through some changes as it (hopefully) dies, and some of those changes make it swell, which can look like it is growing bigger.

And yes, I felt like I spent the whole week trying to press ctrl-Z over and over.

Leslie LaChance said...

Thank you thank you thank you for this post, for showing us what it means to be one's own best patient advocate! I am so sorry for all your frustrations! You really are dynamite! And hooray for getting back on the trial and setting up for a future trial if need be!

Linda Rogers said...

I am exhausted for you after reading this chaotic week of misdiagnosis's and miscommunications. Your an amazingly strong woman. Keep on keeping on!

Anonymous said...

All the Biggest Hugs to you! Go Girl!
I know it seems so stupid that the Drs. are not seeing what you are seeing, but YOU are your own dr. now. I know they have the degrees but you KNOW your own history much much better.
I am so glad your radiation oncologist went to discuss your images with the trial Dr. He is your lucky Dr. I hope every patient is so lucky as you to have surrounded yourself with such a close-knit group of doctors working together with you.

Big Piney Woods Cats said...

I too have non smokers lung cancer and am taking xalkori right now, have been on it for 1 1/2 years. I take 200 mg, twice daily, the 250 just about killed me. I have bouts of nausea all the time, acid reflux, terrible stomach issues, tired, out of breath...........you know.......today I thought I was going to vomit and had diarrhea and had to cancel my plans for the day......I never know and hate to make appointments I don't know if I can keep. My email is calicomom@gmail.com. Would love to hear from you.

Abigail Lowther said...

Wow, Tori, wow! I am so impressed by your self-advocacy and persistence, and I’m so glad you got your drugs!!! You are amazing, and it sucks so much that the system-navigation is a full-time job (not to mention the job of having the illness, and oh yeah, the 90+ hrs/wk of parenting you do...). Thank you so much for documenting all of this, in addition to all the other work you’re doing. And I’m not surprised that your doc was surprised about your teaching—the vast majority of patients are not able to do what you’re doing, so when someone like you comes along, it is definitely remarkable. —Abby Lowther Lewis

Anonymous said...

I couldn't resist commenting. Well written!