I'm still in remission after 5 years!

Posted by lycisca @lycisca, Apr 1 11:36am

I want to share some good news with my fellow cancer survivors. After five years of living from week to week and CT scan to CT scan, at my recent appointment my oncologist told me that my next CT scan would be in six months instead of three to four months. It’s hard to express what this means to me.
Five years ago, I woke from a nightmare ICU delirium to be told I had Stage 4 lung cancer and that without treatment they gave me 3 to 4 months to live. I was fortunate to have an outstanding oncologist who prescribed a targeted new chemo that had just been approved by the FDA. The first 6 months were horrible. I was struggling with the lingering delirium, with a new cancer diet complicated by kidney issues and the life altering side effects of the chemo (entrectenib) which for me turned out to be weakness, fatigue, diarrhea, mood swings. I still have all of that, plus a new tumor that showed up on last June’s CT scan and turned my summer into an exhausting whirlwind of 200-mile round trips for biopsies, doctor visits, blood draws and ultimately, a second chemo on top of the first one.
The lung cancer is still in remission, the tumor under control and suddenly, amazingly, I have 6 months of my life without CTs and blood draws. 6 months to enjoy summer, to plant and watch the seedlings I started indoors flower, to play with my dogs, relax with my devoted husband. I still have a hard time believing it!
Thank you for listening.

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frouke | @frouke | Apr 3 9:14am

Bless you for sharing this beautiful news, it truly gives me hope amen 🙏

cmcguire10 | @cmcguire10 | Apr 4 12:29pm

Good Morning! So very happy for you, that you can share the Great news! It’s awesome that you have had good people to help you! Even Greater is Our Lord Jesus Christ! HE has Blessed you! Amen!🙏 I pray he will continue to give you these blessings for a very long time!❤️

lycisca | @lycisca | Apr 4 1:46pm

In reply to @frouke "Bless you for sharing this beautiful news, it truly gives me hope amen 🙏" + (show)

@frouke Thank you for your kind words of support.

denzie | @denzie | Apr 5 8:01am

Wonderful news. Thank you for sharing.

lycisca | @lycisca | Apr 5 3:09pm

A huge thank you to everyone for their posts. I'm overwhelmed by the flood of supportive responses.
Lycisca

ceciliel | @ceciliel | Sep 9 1:55pm

In reply to @lycisca "@mamajite Thanks to you and to everyone who responded to my post. I'm overwhelmed by the..." + (show)

@lycisca
Thank you for sharing your story! I’m really happy that you are still going strong and that you have found new ways to enjoy life:-)
My husband just started his treatment with Entrectinib, and your post really gives us some hope and comfort.
Big hugs to you

lycisca | @lycisca | Sep 10 11:57am

I'd like to add a bit regarding Entrectinib. Six years ago, when my oncologist started me on it, I'd been told I had 3 3 or 4 months to live. I doubtfully asked the oncologist how long Entrectinib would keep the cancer in remission. His response was that if it worked and if I could tolerate it, it could give me years. And it has.
I know the package comes with a big list of possible side effects the most common being weakness, dizziness, fatigue, nausea, diarrhea and/or constipation. It wasn't on the warnings when I started, but I saw on a recent refill paper that they've now included mood swings. It's a side effect I unfortunately get, and it sneaks up on me. Also, I have light sensitivity so watch out for these two. They're not as easily recognizable as diarrhea or fatigue. I have to wear super-dark sunglasses for driving! I'm lucky that I don't have the dizziness, but the other stuff--yes.

liabo | @liabo | Sep 10 5:41pm

That is wonderful news. I pray you continue to receive great news moving forward. Thank you for sharing your journey.

medtech4 | @medtech4 | Sep 11 10:32am

Thanks so much for your story. I have completed nine months of chemo including 6 with cisplatin and alimpta and 3 with just alimpta. I have stage 4 lung diagnosed right before Christmas 2025. It had spread to my skull and brain. I had a radiation treatment on NYE 2025, which left me in temporary discomfort but improved with a steroid. It is gone now and so are the mets to the bone and lymph node. My primary tumor has shrunk slightly, but the middle lobe of my right lung is still basically non functioning. I take Tagrisso daily with the only side effect of swollen ankles and feet. Occasionally, I get diarrhea, but it's definitely lessened to where I don't have to be afraid to go out.

I think it's great to be in remission. Keep up the good work. Our hearts and prayers are with you, my friend. My husband has been a rock. We just came back from our first little vacation in over a year (before this nightmare started!) and it was great not to have to think about my cancer (except to take the Tagrisso in the morning) I felt pretty good throughout, also. He really wanted to go on a beach vacation since we haven't lived near a beach in close to 15 years. It was lovely.

mamajite | @mamajite | Sep 11 12:01pm

In reply to @medtech4 "Thanks so much for your story. I have completed nine months of chemo including 6 with..." + (show)

@medtech4 I'm so happy you were able to enjoy your beach vacation. cancer definitely can make travel more difficult, so I am making an effort to go places when I'm able. it's also important to have mental health breaks from cancer decision making. your trip sounds like it was rejuvenating! 🏝️

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