Lorlatinib or PF-06463922 - 1272666

idee
Posts:2

I am nearly 5 years living with ALK+ stage IV disease. Brain mets occurred in 5/2014 - asymptomatic. Decreased with switch to ceretinib.
2/15 brain mets grew - treated with SRS.
10/1 - more brain mets with symptoms, treated with RT to cerebellum. 12/1- Started on lorlatinib (PF-06463922) .
Experiencing leg edema, high cholesterol levels, increased PN in feet.
I have been experiencing numbing in my face - primarily on one side in my cheek. It feels like novacain wearing off. It passes quickly, but can occur several times a day. My oncologists have not seen this to date. I am attributing it to the medicine, but maybe it is not associated. Any experience with lorlatinib re: side effects and efficacy would be interesting to learn.
Thanks
Ide

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Reply # - January 22, 2016, 06:12 PM

catdander
Posts:

Hi Ide,

I'm very sorry about your extra problems that seem always to follow this disease. Also I didn't mean to keep you waiting for so long to respond so sorry.

I will ask one of our faculty to respond.

I hope you find a way around this and feel better quite soon.

Janine

Reply # - January 23, 2016, 03:58 PM

Dr West
Posts: 4735

I haven't given lorlatinib yet -- very few people have, since it's still investigational and not widely available -- but this doesn't sound like a side effect of a drug. Especially in someone with a history of brain metastases and treatments for that, my leading suspicion would be that it is related to involvement of one of the cranial nerves (facial) by cancer, a new brain metastasis, or a post-treatment effect/complication (related to scarring). I suspect a brain MRI or lumbar puncture looking for cancer cells in the cerebrospinal fluid (CSF) is the most likely approach to lead to a diagnosis.

Good luck.
-Dr. West

Reply # - January 24, 2016, 06:01 PM

idee
Posts: 2

Dr. West,

Thank you for your insights. I thought I might hear from another person on the trial, but certainly appreciate hearing your thinking on this sensation I have in my face. Thankfully it is not uncomfortable, just bothersome and perplexing. I had an MRI of my brain last week since writing. The MRI showed continued improvement in the cerebellum and other areas of my brain. I have been back to full activity and routine. Two areas showed slight increase (0.1x.0.2cm and 0.1x0.0cm), so I hope your possible reasons for the sensation is not related to brain metasteses. I will share your thoughts with my oncologists.

Thanks again.
Ide

Reply # - April 12, 2018, 03:05 PM

waikay2002
Posts: 2

Hi there: Ide and Dr. West. Where can we get lornetinib, which trial? I have a cousin who has lung cancer brain mets. Did chemo, surgery, taking Ceritinib but progresses, WBR too. She tried alectinib but developed lung problem and stopped. After WBR, there are not a lot of option in my country as new drugs need time to approve. We have been watching your channel and noticed that Dr. Shaw mentioned Lornatinib, is it already available in clinics? Are there any other options if brain mets progresses after WBR? When my cousin t tried alectinib, it really worked and shrank tumour 30pct in two weeks but unfortunately the problem with her lung stopped it. We hope that Lornatinib has similar effect but kind on her lung. Thank you. Rick

Reply # - April 13, 2018, 07:11 AM

JimC
Posts: 2753

Hi waikay2,

Welcome to GRACE. Lorlatinib has not yet received approval, so the only way to receive it at this point is through a clinical trial. You can listen to a discussion of lorlatinib here. In the U.S., it has been fast-tracked by the FDA, and you can read about some preliminary results and side effects here.

To see if lorlatinib is being tested in a trial near your location, you can visit clinicaltrials.gov which lists trials throughout the world, and you can search by country. A listing of the currently recruiting and upcoming trials can be seen here: https://www.clinicaltrials.gov/ct2/results?recrs=ab&cond=lung+cancer&te…

Good luck.

JimC
Forum moderator

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