Hi everyone,
My dad has recently been diagnosed with multiple brain mets (at least 5 in the head) with recurrence in his lungs and lymph nodes. That being said, they’ve said it’s ALK positive which means he’s now on a treatment called Alectinib.
Just wondering how many of you are ALK positive and how you’re getting on? My dads currently squamous ALK positive which apparently is quite rare.
Many thanks,
Annie
Hi HopefulAnnie101
Sorry to hear your dad has brain metastases and hope he has a good response to Alectinib.
You may be interested to know there is a website dedicated to those who have the ALK positive mutation: alkpositive.org.uk/
They provide a lot of excellent information and support alkpositive.org.uk/patient-...
This is our booklet on brain metastases: roycastle.org/app/uploads/2...
We offer a one off patient grant of up to £150 for anyone with a lung cancer diagnosis and you can complete the online form through this link: roycastle.org/patient-grant...
Hope you hear from others who are ALK positive and if you would like to discuss anything you can email ask the nurse at lungcancerhelp@roycastle.org or you can call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600
Take good care of yourself.
The Roy Castle Support Team
Hi, I’m ALK positive and am a member of ALK positive UK. I find it a really helpful and extremely informative group. Wishing Dad good response to his meds. Xx
Hello! I recently joined the group too. Do you mind me asking what type of treatment you’re on? Thank you xx
Hi no I don’t mind at all. I was diagnosed in April 2015. Stage 4 lung cancer. Back then it was 4 rounds of Cisplatin and Pemertrexed. Then I went on to maintenance Pemertrexed. I have responded extremely well and have been on the maintenance for over 7 years, but my last scan showed another spot on my lung. I have only just returned from a follow up scan to decide the next course of action. I don’t think I’m typical and Pemertrexed is offered any more as a first line treatment. There are better drugs available but while it was working for me I stuck with it. Hope this helps. Christine x
Thank you. I hope the spot on your lung is quickly resolved! X
Hi HopefulAnnie, my wife is also ALK+ and had a similar diagnosis. She responded extremely well to Alectinib which cleared all the brain mets. She also tolerated the drug with minimal side effects. I hope it proves as effective for your dad. Best wishes.
Hi Ribeye, thank you for your message. I’m glad to hear your wife has had a positive response. Do you mind me asking how long your wife has been on Alectinib? I hope she continues to do well on Alectinib.
Hi. In the case of my wife, Alectinib proved very effective in clearing the active brain mets, at least one of which was situated in a high risk (brain stem) location for any SRS. She was diagnosed in early 2016 and was on Alectinib for over two years as a second targeted treatment. She eventually demonstrated some resistance and moved to taking Brigatinib. Regards.
Hi I am ALK Positive too. Also a member of the U.K. and Worldwide ALK Groups. I was diagnosed 8.5 years ago and am currently on Brigatinib. I have had brain mets treated with SRS targeted radiotherapy x
Hi Bow-19, thank you. We asked about radiotherapy but there are too many brain mets to treat which would not be effective for my dad. The hope is that Alectinib shrinks some of the smaller ones and the biggest one (2cm). I’ve joined the UK group but can’t find the worldwide one. I hope you continue to see positive results! x
Thanks. I hope your Dad gets the best response to Alectinib especially in his brain. Everything crossed. The Worldwide ALK Positive Group is alkpositive.org Hope you can find it now. Please let me know if you can’t x
alkpositive.org
Lorlatinib 
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