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llpete

ALK Positive

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I was diagnosed in 2012 and completed treatment in dec of 2012. Test have been clear until dec 2016. My Oncologist said that I can start taking Crizontinib but that I also qualify for a Clinical study. A phase 3 Multi-center Open label study of Brigatinib versus Crizotinib in Patients with ALK positive Advance Lung Cancer. Has anyone participating or had participated in this study ?

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Ilpete,

Welcome here!

I am not a Brigatinib vrs. Crizotinib participant.  In fact, my NSCLC Squamous cell type is not responsive to tumor marker-based targeted therapy.  But, let's cast a wide net and see if we can rustle up some experience.

All hands - anyone with experience in the phase 3 Open label study of Brigatinib versus Crizotinib?  Advice on targeted therapy treatment of ALK positive adenocarcinoma may also be helpful.  

Stay the course.

Tom

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Hi, Ilpete,

I will share your post in the LCSC Facebook group and LUNGevity ALK Facebook group to see if we can find any members who can answer your questions!

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Hi!

I was diagnosed December 2015 with stage 4 with alk positive and was put on Crizontinib first and it stoped the growth of it it but that was it so my oncologist decided to put me on alencensa (alectinib) in April 2016 and it has shrunk all my lymph nodes back to normal tumor was in 90% of my lung but now it is just in the base and have had 7 months of normal blood work. I haven't heard of the study of the other drug but wanted to let you know of my results and I know results will be different between patients. Hope this all makes sense.

Jeffrey


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If I recall correctly, Alecensa (alectinib) was showing especially promising results as one's first ALK-targeted drug (odds of benefit & esp. longest duration), so good that it raised the question of whether it might actually be the best drug for that role although it would take a head-to-head phase 3 trial (two groups each randomly being assigned to or the other) to give a definitive answer.

brigatinib has been considered a good 2nd line choice after crizotinib although with a risk of pneumonitis reaction.  With their phase-in approach to dosing there isn't much concern over fatal pneumonitis reaction but if pneumonitis does occur (not usual but it does occur in some patients) you could find yourself (1) excluded from certain other clinical trials of new treatments because of having had that before or (2) excluded from some future trial if they have a restriction on the number of prior ALK inhibitors tried and you've run through a couple of others by then (such trials are becoming scarcer but they had existed before).  Most people wouldn't be too concerned with these when picking their 1st ALK drug, but there are anecdotes of individuals who turned out to be unlucky with one drug or another.  I am ignorant of any data on whether or not it might have any significant advantage over crizotinib as one's first ALK drug, and I thought that as a 2nd line (after crizotinib) it was performing well, so brigatinib is certainly a respectable drug.

Whenever the choice of treatment seems difficult, you (or your oncologist) should really consult with one of the top research oriented oncologists who have been involved with trials of these drugs from phase 1 on.  E.g., Ross Camidge at U. Colorado or Alice Shaw at MGH in Boston are tops in my book (and Camidge even offers phone consultations although insurance won't cover those).  Shaw is my oncologist (got 5 years out of crizotinib for ROS1+ due to meeting her when other docs only knew of chemo for ROS1), and I've met Camidge a few times at the big annual ASCO -- both are awesome.  Don't just assume a comment you hear on the internet reflects the latest thinking -- these doc know the latest because they are doing the work earlier and longer.

Best hopes,

Craig in PA

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Can't say that I have. I was started on Xalkori immediately following diagnosis of ALK positive adenocarcinoma. I got great results with few side effects for 29 months then scans showed some slight progression and my oncologist felt it was time to switch to Alecensa which penetrates the blood brain barrier. I have been on it close to 3 months now with few side effects and my blood work looks good. I will have my first scan after beginning the Alecensa in a week and will let you know how it is working.

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Hi everyone

I'm new member and I have been diagnosed with NSLC ALK positive met.advanced stage 4. I do start Alecitinib one months ago . my x.ray still shows unchanged result but my symptoms start to go better . now I don't have much breath shortened  and cough as I had before . I will let you know after I have my first PET CT .

 

 

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Hi Nagla Mohammed,

I have ALK+ NSCLC and am also on Alectinib. I'm glad you are experiencing some relief of symptoms, and look forward to hearing the results of your first PET scan. I hope the results indicate the medicine is destroying the cancer. - Meloni 

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Hi, Ngala,

Welcome to LCSC. I am glad to hear that your symptoms are getting better on Alectinib. This is a great place to connect with other survivors who have experience navigating a lung cancer diagnosis. Please feel free to explore the message boards, ask questions, and join in on the conversations. I am also happy to provide additional resources and information about LUNGevity's Support programs. Please do not hesitate to reach out!

Hoping for good results on your next scan!

We are here for you.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Hi

thanks for your reply .

this is to update you , now I completed two months and half with Alectinib . so far there is an improvement in tumor size , it starts shrinking , yet , it slow progress but something is better than nothing :)

the most exciting thing there is few side effects like fatigue , few diarrhea . my last blood test shows there is no effect so far on the kidney and liver . the tumor marker are going down .

most of the bad symptoms are gone away , no more cough , no more short breath except when I'm on heavy activity , Thanks God :)

my next scan on 22nd of Apr . will let you know

wish you all a healthy life .

 

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Update:  After being on alectinib for 4 months here are the results of my first PET scan after beginning alectinib:

1. Previously identified focal area of hypermetabolic activity involving the pleura of the right middle lobe anteriorly has significantly decreased in hypermetabolic activity with max SUV of 2.6 compare to prior exam when it had a max SUV of 10.7. THERE IS NO SIGNIFICAN MEASURABLE MASS REMAINING!

2. Previously identified hypermetabolic activity involving the pleura of the right lung medially is NO LONGER VISUALIZED ON TODAY'S EXAM!

3. Stable hypermetabolic activity associated with pleural thickening in the apex of the right lung, which is not significantly changed compared to prior examination.

I will take it!!!!

 

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Oh my!  This is indeed WONDERFUL, Superb, Fantastic, and Celebration Worthy news!

I can think of no better words on a post treatment scan result than: "No longer visualized on today's scan!"  Take it indeed and ....

Stay the course (after due celebration).

Tom

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I have never participated in a trial of any kind however crizotinib was my first line of treatment after being diagnosed with Alk positive adenocarcinoma and it worked beautifully with few side effects for 29 months at which time my scans showed some progression and I was switched to alectinib which has worked just as well with even fewer side effects. We are blessed that there are so many options for us these days.

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