ALK mutation: Getting alectinib targeted therapy for stage 4 NSCLC

Posted by nicee @nicee, Sat, Nov 16 6:18pm

I am new to this site and wanted to get feedback from other people work ALK non-small cell lung cancer. In August 2019 I was diagnosed with a brain tumor and stage 4 lung cancer. In 2016 I was diagnosed with stage 1 lung cancer and had a left lower lobe Tony, since then negative chest CTs every 3-6 months until August. Only symptom I had was a slight headache for several weeks which lead us to discover the brain tumor which is a lung cancer met. We were shocked! I had just biked with my husband across Europe.
My doctor started me on Alectinib after the ALK mutation genome returned. I also had 5 days of target radiation to my surgery tumor site after my craniotomy. I am tolerating Alectinib well but experiencing fatigue and shortness of breath. Getting exercise is challenging. I am waiting for my first chest CT since starting Alectinib Dec 9 & Brain MRI Dec 19. I would like to hear from others on Alectinib and their experience.

Liked by jiatennis

First I want to say, Congratulations on your bike ride across Europe!!! Wow!
Welcome to connect. I want to commend you. I want let you know you are not alone. I am a never smoker & I am a 12 year lung cancer survivor. I would not be alive without my BRILLIANT Mayo Clinic Team.
I am not on any treatment. My VATS surgery removed most of my left lung. I live gratefully from CT to CT with nodules.

I was introduced to Dr Amit Sood who wrote SMART which helped me become mindful and resilient after my diagnosis and surgery which left me breathless.
I respectfully want to share a few books that he wrote and helped me re-train my brain & wrap my mind around this crazy experience: Book Title “HAPPINESS” is my favorite book. I have learned how to ‘pace breath’ to live my best quality of life. I run from lung cancer; and also bicycle 13 miles on a good day, with my husband. We have two continents left to run 10 K races in. Exercise & good diet with hydration and my undying support from Mayo Clinic are my lifeline.

Oncologist, Pharma’s, Pulmonologist and Researchers are discovering the new therapies everyday give us hope. We just need to be with the best resesrch center possible, right? I have seen unbelievable positive research and therapies since my diagnosis when surgery was my only option in 2008. I will be thinking of you and encourage you to stay connected.
All my best, linda

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I have a sibling who was diagnosed in May 2018 with stage 4 ncslc. He started treatment in June 2018 with alectinib and is doing great. He doctors at Mayo Rochester. Scans every 3 to 4 months and all have shown great improvements. He continues to work full time and stays very active. He doesn't complain about any side effects.

Liked by jiatennis

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Thank you Linda, this does give me hope! I’ll look into the books. I live my life with positivity & gratefulness always look for the silver lining. Learning how to Live with stage 4 lung cancer is a new challenge. My team at Duke Hospital has given me excellent care and we are lucky enough to live 20 mins away. I look forward to hearing how you pace your life.
Peace & light,
Denise

Liked by jiatennis

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@lisamb

I have a sibling who was diagnosed in May 2018 with stage 4 ncslc. He started treatment in June 2018 with alectinib and is doing great. He doctors at Mayo Rochester. Scans every 3 to 4 months and all have shown great improvements. He continues to work full time and stays very active. He doesn't complain about any side effects.

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Wonderful to hear! Thank you!

Liked by jiatennis

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@nicee

Thank you Linda, this does give me hope! I’ll look into the books. I live my life with positivity & gratefulness always look for the silver lining. Learning how to Live with stage 4 lung cancer is a new challenge. My team at Duke Hospital has given me excellent care and we are lucky enough to live 20 mins away. I look forward to hearing how you pace your life.
Peace & light,
Denise

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Denise:
Duke has a wonderful medical community!.
You may find The Chris Draft Family Foundation of interest where there are hundreds of lung cancer survivors in a support drive community across the country. Chris was a 12 year NFL player who lost his wife to lung cancer. Check it out!
My husband and I are looking at bicycling across a bridge in every state to bridge lung health awareness and education about lung cancer!
Let’s stay connected. I really appreciate you sharing your journey. Thank you!
Linda

Liked by jiatennis

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Linda,
Last week I starting having muscle spasms, the kind that take you to your knees in pain! I have been experiencing muscle weakness and general fatigue but this was way different! After lowering my Alectinib to 450mg twice a day from 600mg twice a day, It took 4 days until I got relief! I was upset thinking I couldn’t take the one main medication that could possibly help reduce my cancer. Dec 9 I will know for sure when I have follow up scans.
Have you heard of others experiencing this? I’m looking at my electrolytes and drinking more water.
Thanks,
Denise

Liked by jiatennis

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