Experiences with

Lorlatinib

I have been offered Lorlatinib as my next step in treatment. I was hoping that if anyone out there has experience of being on this drug that you could share your thoughts and any tips. Unfortunately I don’t have any other options available to me so I do feel I’m coming to the end of the road.

Also is there anyone taking Lorlatinib as this is probably my next option if the reduced dose doesn’t work. I have read of some scary neurological side effects which is also influencing my decision about the dose reduction.

Here is the full press release: https://www.fda.gov/drugs/drug-approvals-and-databases/fda-approves-lorlatinib-metastatic-alk-positive-nsclc

lorlatinib.

lorlatinib (Lorviqua) will shortly be assessed by the Scottish Medicines Consortium (SMC) for use in NHSScotland, and to invite you to provide a Patient Group Submission for the medicine.

Drug went under review, currently on my first cycle of Lorlatinib. Requesting feedback from anyone out there currently taking this medication? Kind regards.

Does anyone have any experience regarding gaining access to Lorlatinib or Entrectinib on compassionate / named patient basis? Unable to fulfil criteria for trials unfortunately.

Lorlatinib possibly next if available: anyone with success with this or possibly Crizotinib/ Pem if CT stable or better. Thought Pem would last longer in ROS 1. Still a way to go but such a roller coaster ( not the nice kind).

My husband has been on crizotinib, Ap26113, chemo and finally Opdivo which left him deathly sick, Even though his genes were just sequenced at Mass General in Boston and told he needs Lorlatinib, the trials are closed until the fall and he can apply for compassionate care slots at that time.

Lorlatinib seems most likely to help but study is closed and next one far away from us. compassionate care not available. any ideas? anny