The Roy Castle Lung Cancer Foundation
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Pemetrexed seems not to work

Ceritinib was amazingly successful but pneumonitis meant we had to stop for now.

Carb and Pem with 3 cycles of Pem but new brain secondaries.

CT body today and Gamma Knife again as mets are symptomatic.

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).

Thoughts are with everyone else with this lousy illness and their poor families.

R

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Hi just checking if you are on the Alk positive facebook group. This is a great forum with over 1000 members with the same type of cancer. I have brain Mets and LMD so am on brigatinib. It's reduced get size of the Mets in just 5 weeks. There is a way to get this through compassionate access as not yet licenced in the UK.

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Dear Mikest1, thank you for the information.

Unfortunately, ROS 1 and had pneumonitis with Ceritinib so excluded from trial of Lorlatinib and Entrectonib.

Having to use Crizotinib and SRS if needed for now.

Hope no pneumonitis with Crizotinib.

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How did you gain access?

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There is also a ROS1 Facebook page . I have put a link on a few weeks ago but if you are interested I can find it for you. It has people from around the world who are talking about their treatment etc. Wishing you all the best x

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Dear Bow-19, thank you for your help.

Just found out unable to access trial for Lorlatinib or Entrectonib as previously had pneumonitis with Ceritinib. :(

Going to use Crizotinib and SRS as new for now, so hope works.

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That’s not good news re lorlatinib or entrectonib. I hope that the crizotinib and SRS work. Where are you treated at?

I am ALK positive and have been on crizotinib since April 2015 and also had SRS. I had to stop the crizotinib for a few days before and after the SRS.

Hope that you respond to crizotinib and SRS like I have x

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Treated in Channel Islands

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It’s good that you have access to SRS in the Channel Islands. I have been to Jersey and loved it. Hope all goes well

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Do you have BM’s?

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I had two brain mets and had them treated by SRS in January in Salford, Manchester

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It might also be useful to join this group for advice. The ALK like this is amazing and one of the ROS1 members is also a member of the ALK group. I don’t think you will be disappointed. If you are you can unjoin!

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Will do, thank you

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The details for the ROS1 Facebook page are

To join the ROS1ders private FB group:

1) Fill out this form: goo.gl/forms/xDEtUnkSZkpafWjx2

2) Go to facebook.com/groups/ROS1can... and request to join the group.

ROS1+ Facebook Group

Thank you for your interest in joining the ROS1+ Facebook Group. We're glad you found us. This group is exclusively for people with a ROS1 driven cancer and/or their caregiver. Please fill out this form to tell us about your cancer experience. Be aware that we will share this information with member...

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Have done so

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Hi Stouens,

i have attached a link involving a study of Lorlatinib in ALK- and ROS1-positive NSCLC which may be of interest.

ncbi.nlm.nih.gov/pmc/articl...

Kind regards,

All the team at the Roy Castle Helpline

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Thank you.

Unfortunately, had pneumonitis with Ceritinib and so unable to get on Lorlatinib trial. Also as used Ceritinib for 4 weeks unable to get on Entrectonib trial also :(.

Only course for now seem s to be Crizotinib and SRS as nec.

I saw an expanded access trial in the States where anyone who has not been able to access a trial for Entrectonib is able to enrol. Do you know of anything happening here in the UK ? (or in the pipeline). In the interim buying time still.

Of note also has high expression of PDL1 but I see that is often the case with ROS1 and does not always predict a good response.

Thank you for your help once again.

It really is a Maelstrom.

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