When I awakened yesterday morning my first thought was that I would be getting bad news at my scan review later that day. And then my second thought was that if I was truly experiencing progression, Alice was already both aware of and on it.
Two for two.
Like some pernicious weed, my cancer is cropping up again in the same exact spots it always does. Nothing drastic yet—interval thickening and slight increase in size—but the concerning part is how quickly I have become symptomatic. That and the fact that I have now acquired resistance to three ALK inhibitors, with lorlatinib being the biggest hammer in the tool box and supposedly covering most resistance mutations.
Slice of me
So I’m up a bit of a creek. Last night I got a text from my youngest in which he said he was so sorry and then ‘I’m scared.’ I wrote him back saying that I was also sorry and scared but that I was strong and Alice is smart and we will figure this thing out.
At the moment I am staying the course on lorlatinib. We did discuss going up in dose but Alice felt I would experience no true therapeutic advantage while increasing troublesome side effects.
I will scan again in eight weeks and Dr. Shaw is looking into whether it would be safe to perform a needle core biopsy. One area is too close to the diaphragm and the other is inconveniently located underneath my left breast. The last time I had a biopsy it was straight through my boob (as uncomfortable as it sounds).
Hopefully that will be possible though as it could help us figure out possible avenues. Discussed so far have been radiation on the area furthest from the diaphragm and a combo of lorlatinib and some other agent.
Mostly I am sad. Feeling fine (not so very long ago) was absolutely amazing. I’m on a roll with my art/writing/gym/dating and I realize this is going to put a major crimp in things. In short, logistically life is going to get a hell of lot harder and I’m not looking forward to it.
Per the bigger picture, I’m trying to keep my head from going there. Focusing on what’s right in front of me is going to help me maintain my cool and my courage. And I’m gonna need them both.
However, I’m not in this alone. The outpouring of messages after I made a post on Facebook confirming progression has been astounding. As I left my appointment yesterday Alice and her PA Jen Logan both hugged me hard. And then Jen looked me in the eye and said ‘We’re going to fight this together.’ I know she means it.
life and breath: outliving lung cancer 
Ugh! +
I don’t have any answers but I coincidentally was reading a table of data on lorlatinib today and it seemed that there are some mutational variants of ALK (if one has that rather than a different driving mutation or bypass up-regulation) that ceritinib is actually more potent against than lorlatinib. It makes me wonder if someone on lorlatinib could develop something that ceritinib might easily control?
Best hopes,
Craig in PA
Oh Linnea,
Shit, shit, shit.
Is it time to Reiki?
I got nothing else and it probably won’t cure you but maybe it’ll make us both feel so much better.
DO NOT FEEL ANY PRESSURE TO RESPOND.
Sending love,
jan
On Wed, Nov 7, 2018 at 6:08 PM life and breath: outliving lung cancer wrote:
> linnea11 posted: “When I awakened yesterday morning my first thought was > that I would be getting bad news at my scan review later that day. And then > my second thought was that if I was truly experiencing progression, Alice > was already both aware of and on it. Two for two.” >
linnea, i wish your news was better. you have the absolute best team on your side and i will keep you in my prayers. if i can do anything at all please reach out to me. xoxo
Keep fighting.
I know you are strong and I’m glad to hear Alice is smart. You are in my thoughts. Hugs
Linnea – Love and positive energy coming directly to you!!! You are strong and I am praying that you can maintain a sense of peace as you fight this demon. ❤️😘
Love, Karen
You have been through more hell than any one person deserves. Good luck with your decision making. You are in great hands.
All is well. keep fighting and you have to battle this.
Linnea, FYI there is a webinar tomorrow (Thursday) hosted by Andrew Schorr, Patient Power at 2:30 pm Eastern on precision medicine /lung cancer developments. Q and A opportunity. Might tuning in help? Moffitt Cancer Center docs. Love you, girl!
Damn. You’ve posted good news for so long that this was surprising and not in a good way. At the beginning of this process you got a bad prognosis but have survived. Hoping for some approach to work for you.
Damn Damn Damn! I am so sorry to hear this for you. I know you will keep us updated and please know I am holding you close in prayer as you journey through this next step. You are in the best of hands for the best care bless you all.
Marie
Hi Linnea.
Accidentally stumbled across your post. I don´t know which type of LC you have been diagnosed with so forgive me if this isn´t relevant, but have you considered if microwave ablation could be an option? Here in Denmark where I live it is considered experimental- I underwent ablation of 4 tumors in August this year. If you are interested in details, you are welcome to contact me on Twitter @TatianaStilou Best of luck!
Linnea, You were always a great inspiration to Peter and I. Keep on keeping on, and stay ahead of the curve! You continue to be an amazing inspiration to me!
So sorry you are going thru this. But you have such a wonderful team working with you and you’re so resilient I’m sure this too shall pass. Thank you for always being an inspiration and an advocate.
So sorry to hear this news. Def consider radiation on one spot. That and holding til next scan sounds best.
Hugs sweetheart. Here for you.
Xoxo
In my prayers ❤️
Linnea, I just feel that you’re going to win this current battle (the war is outliving the lung cancer, of course). I am an eight year survivor now with recurrence in both lungs. Small ground glass opacities that are not big enough to biopsy – I go in Jan for scans and report (MDA)
You have been and will continue to be my role model. Wishing you and your loved ones a happy holiday season.
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