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I'm still in remission after 5 years!
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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@nadine78
And I'm slow responding to your post. Apologies--again I'm up to CT scans and a slew of medical stuff. I'm sorry to hear about your diagnosis. I will definitely be on Entrectinib until it stops working or there's something better. Long-term chemo is a lot different from a few months of infusions or radiation because the chemo effects are there as long as we're on the chemo. Probably the hardest thing for me is the "new normal." I wish you good luck with your treatment.
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3 Reactions@dbeebe51
In response to your post, I'm 5-1/2 years from the initial diagnosis of ros-1 lung cancer. Then in 2025 I was diagnosed with a second, different cancer in my shoulder, putting me on two oral chemos.
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3 ReactionsDid your cancer metastizied 2 other part of YOUR body. There r miracles which happen daily. We are religious. I was diagnosed on Sept 10, 2025. Stage IV adenocarcinoma. It had metastizied to my right temple. The skin doctor removed the (pimple) like lession on or about mid-August, 2025. I was shocked I had this cancer since I had NO symptoms to indicate I had it. I have been having regular Scans, chemo 5 rounds, am currently on (every three weeks immo drugs) Yarvoy and Optivo. They apper to be working, my last scan appears to be clean. I pray daily this can be controlled, last time I stopped the treatment for couple of mos. The cancer moved to a few lymph nodes, the mediastenum, part of my plura. All was inside the chest cavity, my original tumor was in the lower left lobe. Kindly, any infor. YOU can provide for me will be helpful. God bless and Thanks, rlf66. That is my email address.
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1 ReactionYes, pls provid info on other treatment used before u got into remission?Thanks,
rlf66
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1 Reaction@lycisca it's such an important point you made about long term chemo. while targeted therapies have many upsides, the fact that the side effects are unending is a different challenge. I would like to see more studies on how the side effects change with time. I can only speak for my own experience with osimertinib, but year 1 was easier than year 2, which was easier than year 3.
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5 Reactions@mamajite
I so-o-o agree with you about needing to study the changing side effects of long-term chemos. For my chemo, too, the side effects have increased with the passage of time. With Entrectenib, the fatigue and muscle weakness gradually wear me down. I definitely can't do as much in year 5 as I could in year 1. If my health is knocked down by a cold or infection, it's a fight to get back to where I was before the health issue. Age may also have something to do with it--I don't know. I know it's harder as an older adult to get my strength back than it would have been, were I younger.
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1 Reaction@rlf66
No, the ros-1 cancer in my lungs did not metastasize to another part of my body, although it can do so. The tumor that showed up last year was a completely different type of cancer requiring a different chemo. Now I'm on two oral chemos with two sets of side effects!
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2 Reactions@lycisca
Thanks so much. YOU are indeed blessed and have received very good medical care, it appears. Bless you. And thanks again.
rlf66
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1 ReactionWelcome to Mayo Connect @thomastaylor. I hope you are adjusting to this new diagnosis. It's never easy and can take time to accept. Be patient with yourself.
Sometimes the 'best' surgeon is the one who you trust, and one who you are comfortable communicating your needs.
If it's important to be near home, so you have the support that you need, then look for that. You may want someone in a health network that will work with your local doctor/s. What else is important to you when looking for a surgeon? Did you get an appointment yet?
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5 ReactionsYes 10/1/2026 10;30 AM with Doctor Jason C Sanders , consultation, Cancer Center Roy Richards, Carrollton GA. My hometown.
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4 Reactions