Hanl

My dad was diagnosed in June 2018. Crizotinib does not cross blood/brain barrier and so should definitely not be used if brain mets have been discovered as it won’t work on them. I would push for the Alectinib. My dad started on crizotinib and then brain mets were discovered so he swapped to ceritinib but that didn’t work so he’s now on lorlatinib since beginning of September and is doing really well so far, just had first since starting yday so just waiting on his results now.

snoopycapricorn in reply to Hanl

Hi Hanl, thanks for your reply and for the information - it is really helpful. Wishing your dad all of the best and really pleased to hear that the Lorlatinib is working for him. Long may it continue!

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Ribeye79

The brain mets will need to be treated but Crizotinib will not be effective against them. Alectinib will be. Crizotinib + targeted radiotherapy on the brain mets is an option depending on where they are and how many. The advantage is that this still leaves Alectinib as the fallback option. My wife managed 15 months on Crizotinib + radiotherapy before the brain mets progressed and she then moved to Alectinib. She was diagnosed in early 2016 and continues to do well.

snoopycapricorn in reply to Ribeye79

Hi Ribeye79, thanks for taking the time to reply back to me - it is really helpful to hear other stories. When you say that moving onto Alectinib is an option after Crizotinib, do you mean it is available clinically but perhaps only in the private sphere? I wish your wife all the very best

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Mikest1

Agree with the other comment. I started on crizotinib and it worked for 4 months then progression in the lung and with multiple brain tumours. The problem with NICE and the way they grant approval is the order drugs can be used which can limit our oncologists in switching patients to the best treatments for them. If I were starting again I would go with Alectinib.

Mikest1 in reply to Mikest1

I would also recommend joining the ALK POSITIVE UK facebook group as you get access to patient experience and drug information.

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snoopycapricorn in reply to Mikest1

Hi Mikest1, thank you for your reply - really helpful! I think Alectinib is the way forwards but when I asked our oncologist why they were going for Crizotinib, they said it was because if that didn't work, you could go onto Ceritinib, so that there is another option available, but I think this means we miss Alectinib. There seems to be very strict guidelines on what can and cannot be used after each line of treatment. Frustrating! I will join the group - thanks for letting me know. Wishing you all the best

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Mikest1 in reply to snoopycapricorn

Ceretinib according to my oncologist is hard to tolerate side effect wise. They should know that Brigatinib has been approved this spring as 2nd drug after crizotinib and is a much better drug. I have been on it since crizotinib. It cleared all my cancer brain and lungs for 9 months. Small progression since but have had radiotherapy to zap it. Would always recommend getting 2nd opinion from a specialist hospital like the Marsden or Christie hospital if you feel that local oncologist does not have good knowledge of the available treatments.

Wishing you all the best

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snoopycapricorn in reply to Mikest1

Hi Mikest1, thanks for your reply. My reading also indicates that Ceretinib is pretty toxic! Thanks for flagging Brigatinib to me - I am really pleased to hear that Brigatinib is working for you! I think getting an opinion from a cancer specialist hospital is a very good idea. Thanks again and I hope you continue to do well with Brigatinib

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Hanl in reply to Mikest1

Hi my dad was on ceritinib for only 3 months and it really was awful. He was so ill and lost a lot of weight. They tried to get him brigatinib but the early access scheme had just closed so went for lorlatinib instead and he’s doing amazing on it! He’s put 2st back on and is like a different person compared to how he was on the ceritinib. He had his first mri/ct scans this week so just waiting for results now on 12/11 but feeling positive that this is the drug for him!

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snoopycapricorn in reply to Hanl

Hi Hanl - thanks for this info about Ceritinib & sorry for the late reply (have only just seen this!). All the very best for 12 November - I have my fingers crossed for you all. Take care.

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Bow-19

Hi I think like everyone else that alectinib is thought to cover the brain a lot better than crizotinib which has difficulty crossing the blood brain barrier. Treatment has changed so much since I was diagnosed in 2013 and I think it’s difficult for some Consultants to keep up with the current line of thinking re treatments. That said your mum’s Consultant might have his/ her own reasons for choosing crizotinib, so I would ask what they are. It is definitely worth joining the U.K. and Worldwide ALK Positive Facebook groups, there is lots of information on both sites. The U.K. what is going on here and the Worldwide one research n what’s happening Worldwide. Both groups are amazing and very supportive. There is also a U.K. ALK Database which your Consultant may or may not be aware of. I can send you information like that if you personal message me your email. You can then make your mum’s oncologist aware of it and he can join to get information from other U.K. ALK Specialist Oncologists. Hope your mum gets the best treatment for her xx

Bow-19

U.K. ALK website is alkpositive.org.uk

Bow-19

Worldwide Page is alkpositive.org

snoopycapricorn in reply to Bow-19

Hi Bow-19, thanks for taking the time to reply back to me - it is really appreciated. We asked the oncologist why they were going for Crizotinib and she said it was because if that didn't work, Ceritinib was another option. That is all fine but I think it means we won't get to use Alectinib and we already know that she has metastases to the brain. Thank you for letting me know about the database - I would really like information on that and will private message you. Wishing you all the best xx

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NicF4Partner

Hi Snoopycapricorn

I would agree with Bow-19 that you should ask the question why crizotinib is the preferred choice. It is important that if you choose to understand why these choices are being made for you that you get the opportunity to understand why. Clinicians are very used to answering questions and should happily oblige. There may be a reason for their choice to give crizotinib. We do know that in some cases radiotherapy is offered for the brain mets with crizotinib given as 1st line choice. Treatment plans are unique to the individual. I would phone your mums nurse specialist and try to get another appointment to discuss with your team.

Roy castle lung cancer foundation

Ask the nurse team

Helpline 0800 353 7200

snoopycapricorn

Hi NicF4, thanks for your reply - it is really helpful. They have said that Crizotinib should be given first because they can use Ceritinib after. I am concerned that if we go down this route, we will not be able to use Alectinib (at least not on the NHS). I will contact the oncologist again to discuss. Thanks for your suggestion

Mikest1 in reply to snoopycapricorn

Alectinib has progression free survival of about 3 years if used as first line drug. Crizotinib only averaged 11 months. This is because Alectinib protects against many more mutations. I lost my driving licence when I got the brain tumours. It was really hard to get my license back but successfully got it back after 13 months. Something else to consider. The second opinion is your right to get the best medical advice. All the best

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snoopycapricorn in reply to Mikest1

Hi Mikest1, sorry I didn't see this message until now! Thank you for this information and I am so pleased to hear that you have got your driving license back! I contacted the Macmillan nurse but she is refusing to let me speak to the oncologist - the message is "we are doing the best for your mum - trust us". We have made the decision to move hospitals. Thanks again for your messages. Take care.

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BellaBe

Hi, I just wanted to put out there the other side to the slating of Ceritinib! I have been on this drug for almost a year and although yes I do have some gastric side effects they are manageable.

When my lung cancer returned after chemo and surgery I had some 17 or more tumours throughout both my lungs. After 3 months they had noticeably shrunk, after 6 months they had all gone. In my book that makes up with living with some side effects.

Everyone reacts differently to every drug so please don’t just write something off just because some people have heard it’s going to be awful taking it. It just may save your life. It certainly has been for me.

snoopycapricorn in reply to BellaBe

Hi BellaBe, thanks for your reply! Appreciate you taking your time to tell me about your experience. I am really pleased to hear Ceritinib is working for you and I hope it continues to. All the very best

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