SD last CXR

[Stouens]

57 years old female. Diagnosed S4 with brain secondaries Feb 18 treated with Gamma Knife and ceritinib. Pneumonia so now just going onto Pem maintenance. Initial partial response now SD. ROS 1

[Stouens]

Sorry I meant pneumonitis!

Struggling with the diagnosis still.

The ceritinib worked so well but could not tolerate the pneumonitis. Was transferred to Carbo and Pem treatment and latest CXR showed no change, so a bit of a worry.

The worse treatment was the Dexamethasone after the gamma knife, it was awful.

Hoping SD is a good sign after the initial food response and that Pem will keep it this way for a long time.

Ps your posts and others have enabled us to cope that is for sure.

X

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to Stouens]

Dear Stouens

Welcome to the forum and sorry to hear of your illness and having pneuomonitis during your treatment. It can take awhile to make sense of the diagnosis and can seem unreal, even during the treatment; everyone is different and know that there are many support services available if you need to talk it through with someone.

Hope you do feel better soon and your treatment starts to have an effect. If you wish to discuss anything you can call us on our free nurse led helpline number on 0800 358 7200

All the very best

The Roy Castle Support Team

[Stouens in reply to RoyCastleHelpline]

Thank you for your kind words and support, I’m very grateful.

[Bow-19]

Do you know there is a ROS1 Facebook page? I think it has people from all around the world who have been diagnosed as ROS1. I have the ALK mutation and find that the ALK positive Facebook page is an excellent source of support. If you want me to find out exact details for you I can as I know someone who is a member x

[Bow-19]

I can empathise with you too as I had SRS for two brain tumours earlier this year and found the dexamethasone hard to deal with as I do each time I am on it. I also had pneumonitis and had to come off crizotinib for about 6 weeks, fortunately my scans and X-ray improved. Hope that you come through this bad patch soon x

[Stouens in reply to Bow-19]

Thank you, the dexamethasone was the worst experience as I ended up in hospital with hypomania!

Fine now I’m off it, just hope I will not have to use it for that long again. I was given ceritinib which worked really well with 60%

shrinkage if the lung primary but unfortunately the pneumonitis and had to stop. May still be an option in the future with low dose steroid cover. For now on Pemetrexed but no real shrinkage just stable. Hoping it will shrink further and prevent any secondaries. Just going on to maintenance.

Yes please, let me have any information you feel would be helpful.

Thinking of you too, I really hope your cancer becomes a chronic illness and wish you all the very best.

It really is tough but it is what it is and must fight on like everyone else struggling here.

X

[Bow-19]

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...

docs.google.com

[Bow-19]

Also

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 members of the group, but the group is "secret" according to Facebook practices. Visit this link for an explanation of a "secret" group. facebook.com/help/220336891...

What about Privacy?

Privacy is obviously a concern. We understand that even with the Facebook group, anyone could copy/paste the content and republish. As far as we know, this has never happened. This is a tremendously helpful group with excellent goodwill. We hope to keep it that way. With that in mind, please understand that while answers here will be shared within the group and would never be shared beyond the group without explicit request and authorization, it is impossible to safeguard the data 100%. If at any point you would like to remove your data from the form, we will kindly do so as quickly as possible.

** Remember to click JOIN GROUP on the Facebook page or we will not be able to process your entry. **

[Bow-19]

Hope the above helps. I can relate to your hypomania too as one time when I took dexamethasone I felt mentally ill and unable to slow down.

Wishing you all the best too. It is an up and down journey but being positive when you can helps. It’s sounds like you are positive from your post.

Good luck with the Facebook group if it’s anything like the ALK one you will find the support from around the world amazing xx

[Bow-19]

Dr Alice Shaw in Boston is an expert here is a video link

youtu.be/RwvCbZDDKmQ(Not working as expected?)

[Stouens]

Thank you so much,

I will have a good look.