The Other Shoe

Started by anonymous, September 29, 2015
5 replies for this topic
anonymous

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Posted on
September 29, 2015
From the day I started chemo for my stage 4 lung cancer, I have had nothing but great results. The chemo started working immediately and my breathing improved noticeably after the very first treatment. Each scan showed shrinking (or at least stability) of my tumors and a PET scan even revealed that my targeted medicine Xalkori (crizotinib) had led to a complete metabolic response to treatment.

But everyone living with metastatic cancer knows that this is incurable. We all know that one day the treatment will stop working, one day the cancer will get smarter and find a way around the medicine.

I am on a fancy targeted therapy that has a great track record of controlling cancer in ROS1-positive folks like me. However, it is well known that Xalkori has one weakness, its Achilles' heel: It does not cross the blood-brain barrier. Any cancer cell that manages to slip into the brain can grow freely, unhindered by the medicine.

I bet you can guess where this is going.

My regularly scheduled brain MRI revealed three very small spots where the cancer has taken up residence in my brain. They are tiny and are not causing any symptoms. Thankfully we have been proactive and have been doing brain MRIs every six months to catch this early (if you are on Xalkori and not getting regular brain MRIs, push to get this done). The plan is to get stereotactic radiosurgery, a kind of pinpoint radiation that zaps the tiny metastases. It is brain surgery without the cutting and supposedly there are minimal side effects.
 
How do I feel about all this? I am strangely OK. I mean, it sucks really bad, but I have been so very terrified to get bad news that in some ways it wasn't quite as terrible as I imagined. After two years of amazing results, the other shoe finally dropped. What this means now is more appointments, more doctors to add to my team and another treatment notch in my belt. They say a criminal finally sleeps well the night he gets caught. Something I dreaded so much has happened, so I can't dread it anymore. Plus, there are still treatments, still reasons to have hope.
 
This isn't the end by any means. But it is a nasty reminder that the cancer is still there, still working against me, still threatening to take me away from everything I love.
 
 
Tori Tomalia is many things: a mom, a wife, a theatre artist, a mediocre cook, a Buffy fan, a stinky cheese aficionado. She is also, unfortunately, a repeat visitor to CancerLand. Stay tuned for her continued adventures.
     Facebook: facebook.com/lungcancerblogger
     Twitter: twitter.com/lil_lytnin
     Blog: "A Lil Lytnin' Strikes Lung Cancer" lil-lytnin.blogspot.com
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Tori Tomalia

Member
0 Replies
Posted on
September 29, 2015
From the day I started chemo for my stage 4 lung cancer, I have had nothing but great results. The chemo started working immediately and my breathing improved noticeably after the very first treatment. Each scan showed shrinking (or at least stability) of my tumors and a PET scan even revealed that my targeted medicine Xalkori (crizotinib) had led to a complete metabolic response to treatment.

But everyone living with metastatic cancer knows that this is incurable. We all know that one day the treatment will stop working, one day the cancer will get smarter and find a way around the medicine.

I am on a fancy targeted therapy that has a great track record of controlling cancer in ROS1-positive folks like me. However, it is well known that Xalkori has one weakness, its Achilles' heel: It does not cross the blood-brain barrier. Any cancer cell that manages to slip into the brain can grow freely, unhindered by the medicine.

I bet you can guess where this is going.

My regularly scheduled brain MRI revealed three very small spots where the cancer has taken up residence in my brain. They are tiny and are not causing any symptoms. Thankfully we have been proactive and have been doing brain MRIs every six months to catch this early (if you are on Xalkori and not getting regular brain MRIs, push to get this done). The plan is to get stereotactic radiosurgery, a kind of pinpoint radiation that zaps the tiny metastases. It is brain surgery without the cutting and supposedly there are minimal side effects.
 
How do I feel about all this? I am strangely OK. I mean, it sucks really bad, but I have been so very terrified to get bad news that in some ways it wasn't quite as terrible as I imagined. After two years of amazing results, the other shoe finally dropped. What this means now is more appointments, more doctors to add to my team and another treatment notch in my belt. They say a criminal finally sleeps well the night he gets caught. Something I dreaded so much has happened, so I can't dread it anymore. Plus, there are still treatments, still reasons to have hope.
 
This isn't the end by any means. But it is a nasty reminder that the cancer is still there, still working against me, still threatening to take me away from everything I love.
 
 
Tori Tomalia is many things: a mom, a wife, a theatre artist, a mediocre cook, a Buffy fan, a stinky cheese aficionado. She is also, unfortunately, a repeat visitor to CancerLand. Stay tuned for her continued adventures.
     Facebook: facebook.com/lungcancerblogger
     Twitter: twitter.com/lil_lytnin
     Blog: "A Lil Lytnin' Strikes Lung Cancer" lil-lytnin.blogspot.com
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suki

Member
0 Replies
Posted on
September 30, 2015
I agree it is not the end. I also think it's like dancing with hip boots on. How to keep step? How to manage to live NOW and not be thinking, when, when when? Ugh. You post a great blog. And, you will manage. I am not at all sure of what helps you most, but please come by if you want to. I do have lots of great play materials for the kiddos... even Zander. Or we can meet for coffee. I guess, in the end, gratitude is still the word. Your ducks are in a row for now. I think, if I read your post closely, there is the feeling of, okay, they SAY this is able to be controlled, but for how long? Yep, that's the constant Met problem. Would you have preferred knowing that in two years this problem would surface, but not before then? What a choice! GRR.
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suki

Member
0 Replies
Posted on
October 01, 2015
Tori, I don't know why my post says by Suki. It's not. It's Mary Koral. There ARE reasons to be glad. for sure. Mary
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Susan Fariss

Member
0 Replies
Posted on
October 04, 2015
Tori. Damn, damn, damn. I am so sorry to hear this. I'm praying for you. It sucks to be part of the dread club. My scans are on Tuesdays. Thank you for the tip on brain MRIs
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Marissa

Member
0 Replies
Posted on
October 06, 2015
You have been through so much and come across as so strong. I love reading your blog. You inspire me. Keep it up. I am living with Stage IV breast cancer. I know you have what it takes to get through this challenge too.
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Joy Divine

Member
0 Replies
Posted on
October 16, 2015
hey there, new to the site. i too have stage iv lung cancer... i have the ALK-cdk6 mutation and i too am on xalkori too. was rushed to the hospital in july 2015... after 12 days and several surgeries i was informed that i had just joined the club no one wants to be a member of. i have my first pet/ct scan since july, on monday. nervous about the results already. i was never told/warned about xalkori's achilles' heel: It does not cross the blood-brain barrier. thanks for mentioning it, i will press for scans now. i had a brain mri in the hospital, but nothing since then. your post is encouraging.
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