Anyone with NSCLC have targeted therapy stop working?

Has anyone had the same results with Tagrisso? I have just started Tag and was wondering about other people on this medication.

@mikee2all, Just over 3 years on Tagrisso. No recurrence. My Oncologist plans on continuing until the negative side effects become unbearable. No major negative side effects to date. In fact, he's stopped ordering MUGA scans because my ejection fraction has gone up! The diarrhea stopped after 6 months or so. I never had skin problems.

I'm 63-years-young, walk 3+ miles outside every day. Weight-lifting (bands) 2 or 3 times a week. PT almost every day. Eat a primarily Mediterranean diet. Still working full-time. Life is good!

Thanks so much for your comment. It gives hope. I have been on Tag for only 50 days. So, I'm going thru tests with my oncologist and see where I stand.

Hi @loriwt, I have been taking alectinib for the ALK mutation for 45 months now. Some people get longer, but most people get much less time on that drug. I've had side effects, and a few scares along the way, but it is still protecting me from the cancer. I know that one day, my cancer will mutate more and outsmart the drugs.
At that time,
- we'll do a fresh biomarker test to determine what's driving the new cancer. Is it still ALK, or something different?
- we'll need to see if there is an approved drug that matches whatever new mutation I have grown.
- we'll look to clinical trials for new drugs that may help. (Go Research!!)
- we'll use chemo as a backup plan. Of course, I'd rather find a fancy new smart drug.
Each of these items start with "we'll", because I need to trust in my team, and know that I have their support and knowledge when the time comes to make this decision. That gives me comfort. I'm not alone.

For RET, there are two approved therapies on the market, but they may be specific to certain variants of RET, your doctor will know if the other is a good fit for you. After the therapies are no longer working, some patients can look to immunotherapy and/or chemo. Of course, we're always hopeful that some fancy new drug will be in clinical trials or even approved before we need them.

Thank you so much, Lisa @lls8000 for your reply! This gives me hope and even more faith in the researchers and doctors out there doing all the great work. My doctor only mentioned chemo and I really want that to be the last resort treatment plan for me. I'm always praying new and improved smart drugs keep getting discovered and tested for people like you and me!

Thanks, again! Take care!

@loriwt, I'm not sure if you've found this already, but there is a RET Facebook group: https://www.facebook.com/groups/retpositive
There is a similar ALK group that I have joined which has been great for staying up to date on new treatments. 🙂

Wow, that's great! I searched a little bit before but never found it. Thank you!

I am taking a targeted therapy for nsc lung cancer, diagnosed September 2022. I have been in one drug trial, taken keytruda, had two standard chemotherapies and now in trial that is controlling the cancer. It’s a challenging journey for sure. I hope there will be different options for you if and when you need them. Bless you.

Hi Lisa,

You have responded to me before. I just finished radiation and will be starting alectinib
in Feb. Can you tell me what side effects you have had. I am trying to gear myself up for returning to work in March sometime.
Thinking about returning to work is very stressful , but I need the income and the health insurance.

Hi

I’ve been taking Alectanib for about one year now after the complete removal of my left lung. I had some gastro intestinal issues at the original dose of 1200mg/day. The dose was reduced to 900 mg/day with no further problems. After a few months any side effects like coughing and regurgitation have gone away. I still have a small amount of constipation but not enough to be a bother. I’m getting scans every 3-4 months and so far no evidence of recurrence. I’ll keep taking this as long as it’s working even though it’s very expensive. I have an excellent quality of life