Lorlatinib

[BellaBe]

hello

I have been living with ALK positive lung cancer for 6 and half years.

I had surgery at the beginning to remove a 7cm tumour from the bottom of my right lung this was followed by chemo. Reoccurrence a year later I was given Ceritinib which completely cleared my lungs of over 17 tumours.

I was diagnosed with brain metastasis 2 years ago which I had SRS for. This was successful for awhile but I now have progression in one of the mets.

My recent thorax/Abdomen CT has now also shown a small tumour at the bottom of my right lung. So after 3 and half years Ceritinib has finally stopped working for me. It’s had a really good run but I always knew it wouldn’t be forever.

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.

Many thanks for any information offered. Xxx

[Ribeye79]

Hi BellaBe,

Sorry to read about the progression in one of your mets. It’s a situation I know all too well as my wife was diagnosed ALK approximately 7 years ago and, after her own similar progression, has been taking Lorlatinib for just over 12 months.

She had previously been taking Alectinib which worked well, including on her brain mets, for 3 years. I wonder if Alectinib is also another option for you? As for Lorlatinib, it has certainly worked well to brings things back to stability and worked particularly well to deal with the brain mets. She has tolerated it very well despite more brain fogginess compared with her previous ALK inhibitors.

We remain optimistic that Lorlatinib will continue to work for several more years. Wishing you well on starting your new treatment.

[BellaBe in reply to Ribeye79]

Thank you both for your replies and suggestions. Unfortunately Alectinib is not available as a second line treatment after Ceritinib so my only option is Lorlatinib.

Ribeye, it’s really good to hear your wife is doing well, I must admit that the side effects of Lorlatinib have been freaking me out.

May I ask if your wife also had progression in her lungs as well as brain? And is that why she had to come off Alectinib? I have to come off the Ceritinib because after over 3 years of having no tumour evidence in my lungs I now have one small one and along with the progression in my brain ( they spent a year thinking it was radiation necrosis post SRS and have now changed their minds), they have said that Lorlatinib is my next step. Bit scary as options after that are non existent.

Thank you so much for taking the time to reply x

[Ribeye79 in reply to BellaBe]

Hi BellaBe,

My wife did also have lung progression hence the conclusion of broader resistance and decision to switch to Lorlatinib.

My wife started with half the recommended full Lorlatinib dosage to begin with - I think for a month - to assess tolerance and any side effects. She had some peripheral neuropathy, mainly in fingers, and her hair thinned a little, but all has generally been tolerable. Some fatigue is also noticeable occasionally. However, I think tolerance and side affects can effect everyone differently so you will need to assess these with your oncologist.

Maybe the reduced dosage introduction of Lorlatinib is something to consider, depending on your level/speed of overall progression?

[BellaBe in reply to Ribeye79]

Thanks Ribeye, starting on a reduced dose sounds like a good idea. I will suggest it to my consultant when I next see her x

[Stopgap123]

Hi, like Ribeye suggested, is Alectinib a possible next step instead of Lorlatinib. This would enable you to have another TKI to fall back one after Alectinib. Wishing you the best x

[Bow-19]

I know some people who have progressed on lorlatinib and are now on the Nuvalent trial at the Royal Marsden. I think it’s a phase 1 trial.

[BellaBe in reply to Bow-19]

Thanks Bow for that information, I haven’t started on Lorlatinib yet and was just trying to find out others experience.

I think it’s a little early maybe to be thinking about progression on Lorlatinib as I’m hoping that it will work well for me.

I’ll bear in mind the trial info for future reference.

Thank you.

[Bow-19]

Hoping it works well for you too xx

[JanetteR57]

never give up... many of the newer treatments were unavailable even a few years ago and there are always new ones being trialled or approved for different lines of treatment as more is learned about lung cancer especially those with recognised driver mutations.

The CNS who encouraged me to get involved in lung cancer research (EGFR +ve) managed to get onto two trials of brand new drugs which enabled her to live 4 years 4 months despite at the time a 6 month prognosis. those treatment types are now on 3rd generation and she only passed away in 2015. There is no other type of cancer for which so many treatments, combinations and new treatments have been introduced in such a short time. I've met and worked with other patients whose tumours progressed on one medicine then they were able to get onto a new one either on clinical trial, compassionate use or it had been introduced for their situation. hope the new treatment works for you.

[BellaBe in reply to JanetteR57]

Thank you for your reply. I guess I feel like I’m at the end of the road because now the Ceritinib is not fully working and Currently Lorlatinib is my only option other than chemo which I’ve sworn I’ll never do again.

But you’re right, just got to keep going. I’ve had 6 and half years since diagnosis and generally I’m pretty well so hopefully something else will also come along x

[JanetteR57]

Hard I know..... although even with more traditional agents like chemotherapy and radiotherapy, there are trials underway to reduce the harshness of treatments whilst assessing their effectiveness if different combinations or doses are used. it's only in recent years that some chemotherapy has become available in tablet form so having seen major changes in every type of treatment since my diagnosis and treatment, and through extensive involvement in research since 2013, I am far more optimistic these days having seen the major improvements and increased understanding globally with more being discovered ll the time.

Fingers crossed you're suitable for lorlatinib and respond well to that.... keep on keeping on.... good luck.

[Lifesab]

Hello BellaBe. I think our “paths” may have crossed in the past. I’m glad to hear you are still going strong. I started on Lorlatinib in October 2021 after being on Ceritinib for 3 years prior to that. Like you I had SRS treatment ( on 3 occasions, the last being in October 2021 ). Consequently I started on Lorlatinib.

As is the norm they start you on a higher dose but unlike previous drugs whilst I didn’t have any gastric problems I did suffer from shortness of breath which upon investigation revealed I had wide spread inflammation of my remaining lung so I had to stop the Lorlatinib and take a short course of steroids until the inflammation went. I recommenced a lower dosage of 50mg daily of Lorlatinib and have been on this ever since. I’m glad to say I’ve had no further side effects.

I hope this helps. Please do not hesitate to ask any questions that you might find relevant.

Take care.

[BellaBe in reply to Lifesab]

Hello Lifesab

Yes you’re right we have crossed paths before and I’m also very glad to hear that you’re doing ok.

Your information is very helpful thank you and I will definitely take you up on the offer of questions answered. I’m still in processing mode to be honest as I only found out last Friday that the Thorax/Abdomen CT showed relapse in my lung. It was a shock after 3 and half years of clear CTs on Ceritinib. The brain mets have been ongoing, mainly stable apart from one, as I mentioned before until last week they thought it was more than likely radiation necrosis but my SRS was over 2 years ago now so the latest decision is progression in the right occipital met.

I always said I didn’t want to go on Lorlatinib as the side effects freak me out. I’m so used to living with gastric issues on Ceritinib anything else is a bit scary so hearing real life experiences really helps.

I’ve been given some time to process before I see my oncologist again so if you don’t mind I may well message you again as and when my queries arise.

Thanks ever so much for responding x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Bella Be

So sorry to hear about the recurrence of a tumor in your lung and the progression of a brain met. This must have been a blow when things had been going so well. I see that you have had a good response to your questions and sound advice, so there is little for me to add at this stage. Once you have processed this I'm sure there will be further discussions with your Oncology team regarding the next steps so you can make an informed choice. Should you wish to discuss anything further, you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

You may find these links helpful

This is the link to our latest news about lung cancer: roycastle.org/news/

And our research information can be found here: roycastle.org/research/

This is the link to the ALK positive support group facebook.com/groups/ALKPosi...

the website is: alkpositive.org/

Wishing you all the best

The Roy Castle Support Team