Is anyone here ALK+ ?

Posted by mattieg @mattieg, Sep 27 7:30am

Any fellow ALKies here? I’m recently diagnosed, started taking 1200mg of alectinib (Alecensa) a little over two weeks ago. No side effects so far, other than some weight gain and fatigue. The blessing is that within a few days, the shooting pains in the right temple, where there is an 8mm nodule in the brain, completely stopped!
All 3 tumors in the lung and brain are small. 9 and 12 mm in the lung, 8 I’m brain. Two chest lymph nodes nodes. Apparently these have been growing close to three years, and are metastatic from the adenocarcinoma in the left lung in 2020. The stem or sleeper cells that original tumor sent out before dying decided to avenge mama, and mutate to become ALK+. 😄.
So if you would like to talk, I’m here!

Interested in more discussions like this? Go to the Lung Cancer Support Group.

denzie | @denzie | Sep 27 9:41pm

The ALKies here will be checking in soon. While you're waiting to meet others here there are a couple ALK+ groups on Facebook too.

mattieg | @mattieg | Sep 28 4:17am

In reply to @denzie "The ALKies here will be checking in soon. While you're waiting to meet others here there..." + (show)

@denzie Yes, I’ve joined a couple of them. Thanks!

Lisa, Volunteer Mentor | @lls8000 | Sep 28 12:39pm

Me!
Hi @mattieg, it's great to know that your specimens were sent for testing. The results can help drive the treatment plans. I was diagnosed with ALK+ lung cancer, stage IV in early 2020. I've been on 1200mg of alectinib since May of 2020. It's been highly effective for me (fingers crossed that continues for at least a few more years). I noticed that I started feeling better after just days of taking the alectinib too! I had a lung full of tumors and it was in my liver at that time.
I do have some remaining side effects, but I've learned to deal with them over the years. I feel that we need the treatments to stay ahead of our needs. I'm filled with hope from the work of the ALK Positive organization. There are many new promising treatments in various research phases. It's an exciting time.
So, your doctors believe that your original 2020 tumors were not ALK, but your new ones are? That's interesting. Mine were ALK from the initial discovery, but they were advanced at that point.

mattieg | @mattieg | Sep 28 2:15pm

Hello, Lisa!
6 years on Alectinib is amazing! It’s been a little over two weeks for me and the sharp shooting pains in the right temple stop after just a few doses. I also have great hopes for this and other medications through the years. Fatigue and weight gain are what I’m dealing with right now. I do try to make it to the gym at least three times a week, doing some cardio and strength training. And trying to eat well.
No, they don’t believe the original adenocarcinoma tumor in 2020 was ALK. It was successfully treated with radiation and chemotherapy. But it was never tested so who knows, it might’ve been and was just in the right spot to be killed with those treatments. Thank you for your reply. This is a great group.

mally007 | @mally007 | Sep 29 6:38am

Hi,
I am another ALKie! I was diagnosed stage 4 in Jan. 2020. I too, started on Alectinib. I had weight gain and fatigue. I had some random muscle pains, mostly at rest but that went away after the first 6 months. I had progression with 12 small brain mets last August. I had them zapped and was switched to Lorbrena. I only take 1/2 a dose due to the harsh side effects. And yes, thank you to researchers and the ALK Positive organization for working to help us live longer. I am living my life everyday enjoying family and friends, doing the things I like to do. It sounds like Alectinib is working well for you too. I wish you continued success!

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