Karst mountains between Guilin and Yangshuo
Home My StoryMedical Updates Compassionate Use Lorlatinib is in Hong Kong

Compassionate Use Lorlatinib is in Hong Kong

by Maggie Jones

We’re on vacation in Guilin, China, but I just got a call from my oncologist that they finally have my compassionate use lorlatinib! Actually, they called to tell me that I need to add a cholesterol test and EKG to my next blood work appointment. Before they could hang up I almost yelled – “is my medicine in?!” and they confirmed it has arrived. I can’t tell you what a load off this is.

Wednesday’s blood work will tell us how my tumors are responding and whether my body is holding up after almost a month of lorlatinib.

I’ll tell you right now: my tumors are responding and my body is rocking.

The tumors behind my clavicles have been my bellwether and, fewer than three weeks in, the one on the right is no longer palpable. Leftie is right behind it – smaller every day and all but gone.

The very mild side effects I had during the first week melted away and I feel about as healthy as I ever have. Compare this to the weeks of vomiting and months of nausea/ dizziness with crizotinib (though I’m not sure how much of that could have been attributed to the first round of radiotherapy).

I am INCREDIBLY lucky to have access to – let alone be responsive to – a second TKI. At the same time, it’s no less than I’d expect thanks to the power of fasting, a clean keto diet, and all your wonderful prayers and good thoughts.

I’ll update with the official medical report on Wednesday, of course, but in the meantime, let’s hope I can keep on coasting with lorlatinib for a few to several years.

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Dave & Lupe May 12, 2019 - 12:04 pm

Great news and it is so good to hear you’re feeling healthy and that your body is responding well to lorlatinib! We’ll be hoping and praying for the blood work to confirm what you know. Much love!

Maggie May 15, 2019 - 12:39 am

Thanks so much! Bloodwork is this afternoon so my fingers are crossed.

Lynda Long May 14, 2019 - 10:27 pm

This, is wonderful news!!!! Praying for you daily, God is obviously at work holding you in His Hand!! I also asked for you to be added to the HAGAN Family Prayer Chain! They are prayer warriors! Keep on keeping on, my beautiful niece! You two have a wonderful vacation!!

Maggie May 15, 2019 - 12:39 am

Thank you so much for the prayers! And please thank the Hagan family for me! Your words are my mantra and I fully intend to keep on keeping on with the help of all your love! xo

Peggy Lucas May 18, 2019 - 5:07 am

Thinking and praying for you often, Maggie. Sending love and hugs to you!

Maggie May 18, 2019 - 8:12 am

Thank you so much! I will live to eat all your tofus!!!


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