My participation in this, my sixth phase I clinical trial, would not be possible without the concept of compassionate use/expanded access.
That is because I did not qualify–was precluded–from the actual trial. The reason? Because I’ve had too many previous therapies–specifically ALK inhibitors. Three to date. Well, until yesterday 🙂 Now four.
Fortunately, there was a back door. And I had a crew of people knocking on it for me. Colin Barton, who works so much magic behind the scenes at ALKPositive as chair of the Medical Committee. I talk a lot about goddesses; this man is a god of good. An ALK+ patient himself, he uses his smarts, personal resources and the fervor of a man on a mission to advocate for the other members of this club. He has initiated conversation with the decision makers at various pharmaceutical companies. I shared with him that at first I thought this might be a fool’s errand, but Colin is a visionary and he saw something I did not. And he has assembled an amazing team of fellow patients who work tirelessly to ferret out potential treatments that could benefit the ALK community.
My oncologist Dr. Jess Lin was also relentless on my behalf–contacting the sponsor almost daily. Jess presents as sweet and mild mannered, but she can be ferocious when it comes to her patients.
Of course, this was a time sensitive matter and some of my friends (talking about you Rob Densen) were not satisfied with the pace as I waited for drug. Where I was hesitant to reach out he was not and I am grateful.
So there we have it. Today I took my second tablet and then lay down for an hour so as to better visualize the cancer exploding like a mouthful of Pop Rocks. And, to continue with that metaphor, my mind continues to be blown by what a long, strange trip the last two months have been. I spent a whole lot of time thinking about dying all while hoping it wasn’t true.
Not natural bedfellows–these two thoughts. At least if you are hoping for a good nights sleep.
Therefore I am happy to report that I am still feeling good/better and that my dreams last night were sweet.
I am so happy for you! Colin and all the other people at ALK Positive are really wonderful ❤️
A huge shoutout of gratitude to everyone on your team, Linnea! And may your dreams continue to be sweet.
That last comment of yours was the best, sleep well my friend!✊🏽❤️
You’ve got the right peeps on your team 💕
On Fri, Aug 13, 2021 at 4:25 PM life and breath: outliving lung cancer wrote:
> linnea11 posted: ” My participation in this, my sixth phase I clinical > trial, would not be possible without the concept of compassionate > use/expanded access. That is because I did not qualify–was precluded–from > the actual trial. The reason? Because I’ve had too many” >
Colin and the team ❤️
Take care Linnea!
you keep hope alive, thank you
Wishing you more sweet dreams that come true.
Your journey is inspiring. I’m grateful that you share these regular posts. My mother has the same ALK pos lung cancer. Reading your posts makes the ordeal feel less lonely and scary. Thank you.
I’ve been on Alecensa since October 2019. Been working well until now ( to the Glory of God) hope you can get in a new line of therapy. I think that’s it is unfair for people like us that just are trying to live an extra day …
Are you OK?
Linnea, Hoping and praying that you are OK. But, worried about you. XO
Hi: just found your blog. Thanks for being an explorer for us. I was one back in 1980 with Osteosarcoma. Test subject for a year and been in St Judes follow up study since then. Was diagnosed with NSCLC stage 4 Alk+ October 2019. Been on alecensa since then. Tumors reseeded 100%. Remains the same as of today. Any suggestions, opinion and suggestions are greatly appreciated. Keeping you in my prayers … all is possible in Jesus Christ. God bless you and sleep well.
Hold strong linnea xx