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ALK+ Lung Cancer

Surviving, Thriving (and DIYing!) With Lung Cancer

 

In September 2019, at age 48, I was diagnosed with Stage IV lung cancer that had metastasized to my brain and bones. Before my diagnosis I was otherwise healthy and did not have a strong family history of cancer. My family, friends and I were horrified at this diagnosis and all the unknowns but today we have so much hope, and I want to pass it on!! 

I especially wish that someone who needs to learn more about this rare cancer or has a similar terrifying diagnosis will find this page and some answers, and maybe even some light in a dark time! I’m continuing to live and love life and so can you!

FAQs

What is ALK+ Lung Cancer? ALK is a gene that we all have; in the case of ALK+ cancer, the gene mutates for a reason that isn’t fully understood yet and causes cancer to grow. ALK+ cancer affects only about 5% of non-small cell lung cancer patients worldwide.

What caused your cancer? Researchers have not been able to identify why the ALK gene and others like it mutate and cause cancer. So far they haven’t been able to link it to anything in my environment but they do know that this isn’t the kind of genetic mutation that is passed from one generation to the next. I didn’t get it from my parents and I can’t pass it onto my kids. 

What kind of treatment are you on? I’m taking an oral chemotherapy, called targeted therapy, which consists of pills I take morning and night that initially shrunk my cancer masses and now keep the ALK+ genes from mutating into cancer cells. 

My sweet nephew

How long will you be on this treatment? I’ll be on some kind of cancer fighting treatment for the rest of my life, starting with this medication until the cancer figures out a way to grow despite it. After this targeted therapy there are 4 more I could potentially try, and if other targeted therapies don’t work, traditional IV chemotherapy and radiation are options too. In the meantime I’m hoping for research to come up with other ways of treating ALK+ cancer. I have bloodwork, heart and eye exams, a brain MRI and chest/abdomen CT scans every 8-12 weeks to monitor my cancer and make sure the oral chemo is not causing other problems.

Are you sick? No, I’m feeling well. Right now while my targeted therapy is working I’m able to carry on and live life! I’ve slowed down a lot, and have some side affects to the drugs like fatigue, edema and some other minor issues, but I mostly feel like myself again. 

….and sweet niece

Are you in remission? I wish, but no. While my current targeted therapy did a great job eradicating the cancer spots on my bones, I still have tumors in both my lung and brain. They have stopped shrinking, but since they aren’t growing either, they’re considered stable. When the cancer finds a way to grow again it will be considered progression. I’m hoping that day doesn’t come for a long time!

My little munchkins…not so little anymore

What’s ahead for you? When you’re first diagnosed with a disease like this the first thing you do is take to the internet and try to absorb everything about it. Right off the bat we learned the life expectancy for ALK+ lung cancer isn’t all that great. BUT! There are amazing strides being made just in the last few years with the treatment of this disease! I refuse to live my life with any number looming overhead! There are people with this disease who are way outliving their life expectancy. I’m planning on being one of them! Research is constantly buying us more time and I’m filled with hope for the future! Right now my kids are all in college and I can’t wait to see all that their young lives have in store for them, their jobs, relationships, life! I can’t wait to travel more with Mark and have many more funny and joyful times ahead with my friends and family.

Can you work? Are you going to keep DIYing? Yes! I won’t be tackling the big home renovations myself as much anymore, but I’ll definitely be doing smaller DIYs and fun projects and hope you’ll come along with me! In the meantime, if you’re new I’ve been blogging for 11 years – here are a few of my most popular posts!


The human heart beats
approximately 4,000 times per hour
and each pulse,
each throb, 
each palpitation
is a trophy engraved with the words
‘you are still alive.’
You are still alive.
Act like it.
-Rudy Francisco


Thank you all for your care and kindness. I’m truly grateful! 

 

For more info about ALK+ cancer check out ALKPOSITIVE.ORG.

Questions? Email me at lisashineyourlight(at)gmail.com.