Newly diagnosed with ALK mutation

[PCW]

 

Hi Everyone!

It’s been 6 months since I posted last. Would like to give a little update. I was diagnosed with stage IV NSCLC more than a year ago. Given 4 cycles of triplets starting in May. After that Carbo was dropped and I was continued with Keytruda and Alimta. Till I developed a skin rash and my ca19-9 kept on rising . My oncologist switched me to taxotere every 21 days as a second line treatment.  Carbo was put back in the regimen about 2 months ago: carbo and Taxotere day one followed by Taxotere a week later . Each cycle given every 28 days. 
unfortunately, my ca19-9 has been fluctuating. The latest reading is 140. My oncologist suspected that it might due to the 11 lesions in my liver(largest one is more than an inch). Meanwhile, all other areas of metastasis seemed to be shrinking including my left lung(started from the right), ileum, sacrum,  thoracic spine area and my left trachea. I have no or very low PDL 1 from my biopsy a year ago. Last week, my oncologist informed me that they found an ALK mutation in  the Guardant test that I took 2 months back. Now the plan is, continue with carbo/Taxotere until my insurance approves the use of Lorlatinib, a third generation AlK inhibitor. So, this has been quite  a year for me, with all the ups and downs with my treatment. By the way hope everyone is doing well! Meanwhile would appreciate any feedback. And I have survived stage iv for more than a year!

              PCW (Paul)

[Tom Galli]

Paul,

Surviving Stage IV disease for any length of time is something to celebrate. You've already beat the mean survival rate so why not make the 5-year mark and beyond!

I'm happy they discovered the ALK mutation and that it is a treatable form. I don't know much about Loriatinib. Perhaps someone with experience can chime in and give use their insight.

Stay the course.

Tom

[RonH]

On 2/7/2022 at 10:50 PM, PCW said:

 

Hi Everyone!

It’s been 6 months since I posted last. Would like to give a little update. I was diagnosed with stage IV NSCLC more than a year ago. Given 4 cycles of triplets starting in May. After that Carbo was dropped and I was continued with Keytruda and Alimta. Till I developed a skin rash and my ca19-9 kept on rising . My oncologist switched me to taxotere every 21 days as a second line treatment.  Carbo was put back in the regimen about 2 months ago: carbo and Taxotere day one followed by Taxotere a week later . Each cycle given every 28 days. 
unfortunately, my ca19-9 has been fluctuating. The latest reading is 140. My oncologist suspected that it might due to the 11 lesions in my liver(largest one is more than an inch). Meanwhile, all other areas of metastasis seemed to be shrinking including my left lung(started from the right), ileum, sacrum,  thoracic spine area and my left trachea. I have no or very low PDL 1 from my biopsy a year ago. Last week, my oncologist informed me that they found an ALK mutation in  the Guardant test that I took 2 months back. Now the plan is, continue with carbo/Taxotere until my insurance approves the use of Lorlatinib, a third generation AlK inhibitor. So, this has been quite  a year for me, with all the ups and downs with my treatment. By the way hope everyone is doing well! Meanwhile would appreciate any feedback. And I have survived stage iv for more than a year!

              PCW (Paul)

Hi Paul,

If you haven't already discovered it, there a very active Facebook group "ALK Positive" with thousands of members worldwide that we all have one thing in common, the ALK mutation. Lots and lots of experience and very knowledgeable people in the group. I myself was diagnosed 3A 4 years ago, and my ALK+ mutation found 2.5 years ago. I've been on Alectinib (2nd generation inhibitor) for the past 2.5 years with very good results so far. Best of luck. (The Facebook group is private and only open to the ALK patients and their support partners (spouses, children, etc). - Ron

[Rower Michelle]

Hello Paul,

I’m sorry I somehow missed your post. Like Ron, I have the ALK Mutation too.  The initial biomarker testing missed the ALK-fortunately my oncologist had two other patients with ALK and sent my biopsy for comprehensive biomarker testing at Foundation Medicine.  Who knew there was four tests for ALK?   Anyway I’ve been on Alectinib for three and a half years now. 
 

In addition to the ALK FB page, there will be an in person conference in Denver.  I went in 2019 when it was in Atlanta and made many lasting friendships.  
 

The fact you have a low PDL actually is good news as emerging research indicates that patients with a PDL 1 under 50% have a longer response on targeted therapy. 
 

I’m sorry you’ve had to go through all of this but now you’re on a good path! 
@RonH are you coming to Denver? 

[RonH]

On 4/21/2022 at 10:07 PM, Rower Michelle said:

Hello Paul,

I’m sorry I somehow missed your post. Like Ron, I have the ALK Mutation too.  The initial biomarker testing missed the ALK-fortunately my oncologist had two other patients with ALK and sent my biopsy for comprehensive biomarker testing at Foundation Medicine.  Who knew there was four tests for ALK?   Anyway I’ve been on Alectinib for three and a half years now. 
 

In addition to the ALK FB page, there will be an in person conference in Denver.  I went in 2019 when it was in Atlanta and made many lasting friendships.  
 

The fact you have a low PDL actually is good news as emerging research indicates that patients with a PDL 1 under 50% have a longer response on targeted therapy. 
 

I’m sorry you’ve had to go through all of this but now you’re on a good path! 
@RonH are you coming to Denver? 

Hi Michelle,

Looks like I missed your question about the Alk+ Summit in Denver. I had wanted to go this year but my wife is overseas visiting her elderly mother for the summer, and since I no longer want to fly and I didn't want to drive that far alone, I decided not to. Plus I'm fighting the side effects of the Alectinib......fatigue, muscle pain and shortness of breath (to name a few), so I was worried a little about the altitude there. Very grateful that the Alectinib is still working for me after over 2.5 years but between my age, weight and the side effects, I don't get out and about much anymore, so I signed up to attend as a "virtual" attendee. You attending?