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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.


16 Replies

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.


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.


How did you gain access?


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


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.


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


Treated in Channel Islands


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


Do you have BM’s?


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


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!


Will do, thank you


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...


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.


Kind regards,

All the team at the Roy Castle Helpline


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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