Anyone with NSCLC have targeted therapy stop working?

Hi @aprilradek, congrats on getting through radiation! It has to be nice to have that behind you. From what I've heard from others, the radiation can continue to impact your energy levels, so try to not do too much. I worked for the first two years after I was diagnosed. I had a high-pressure job and the stress of everything was finally just too much to handle. I am fortunate to have the support of my past employer and my family.
Thankfully the alectinib has kept the cancer away. Everyone experiences side-effects differently, so there's no way to tell how you'll react. I have had different side-effects that have come and gone. I still struggle with some fatigue if I do too much, sore muscles take longer to heal, and I believe that I do have some brain fog which is hard to measure. My doctors keep a close eye on my kidney and liver functions, which go to abnormal levels now and then. I still need to watch my fiber intake and take something once in a while for GI issues. Early on most fruits tasted sour, but that went away in the first few weeks.
I took off work the first month after I started the therapy because I didn't know what to expect. I was pleasantly surprised that I was feeling much better after starting. I am stage IV, so that was my only treatment, and I was feeling pretty rotten before I started the alectinib. I'll only give it up when the cancer outsmarts the meds, hopefully years from now. Best of luck to you! Reach out if you have questions.

Hi @sonshine161, I'm glad that you are doing well on the reduced dose. What stage was your cancer when you were initially diagnosed?

Hi @aprilradek!, I just wanted to check in with you to see how you were doing now that you've started taking alectinib. I keep hearing good things about alectinib after surgery in earlier stage ALK patients, and it's all very encouraging. Are you experiencing things that you believe are side-effects of the meds?

Hi Lisa,

Alectinib and my body are not friends at the moment. I was on 1200 daily total and after 2 weeks I was having debilitating muscle pain & spasms- Muscles I didn't even know existed. It was so strange how it moved around from muscle to muscle. I am off alectinib for 2 weeks. I checked in with my doc this past Monday. Today is the 3rd-day alectinib free and I can touch my toes without crying out in pain. He will do labs every Friday - my CK level was 860 and my liver labs did not look good. My doc said we may try again with a lower dose in 2 weeks. Thanks for checking in, I was planning on going back to work part-time, but the date keeps getting pushed back. I need my work insurance to get care. How are you feeling? Was your latest scan okay? Are you on 1200mg a day? I also had a weird taste, mine was more of a soapy taste in my mouth not sour. But it disappeared after a few bites of the food- or a few sips of the drink. I was constipated while on alectinib. Even with massive amounts of fiber and laxatives, it didn't help much. Alectinib is a miracle for most stage 4 cancer patients- I will see how I respond with the lower dosage. I appreciate your feedback and supportive comments.

@aprilradek, Ouch that sounds painful. I have been on 1200 mg since I started. I still have some muscle soreness, but nothing that is ever extreme or not tolerable. My liver and kidney numbers go up and down, but overall level off in between. Many people have success with a lower dose, if that works better for you. Fruit tasted bad to me, but that went away after 2-3 weeks. The constipation is better than when I first started, but still continues. Dulcolax helps me.
I hope things get better for you soon, it would be difficult to manage all of this and work on top of it. Keep me posted. Hugs.

Hi Lisa,

Thanks for the kind words- I have never experienced such weird & severe muscle pain. I am so thankful I can walk now.

I am sure my labs will be fine soon and I will start at a reduced rate. Can you tell me how long you have been on Alectinib? I forgot-

Good morning April (@aprilradek), I was recently put on another med for something unrelated to the cancer. I did a workout that I do regularly and had unexpected sore muscles, that seems better now, so maybe my body just adjusts to it better than some people. These meds impact us all differently, which seems strange, but they are pretty powerful. I know there are stage IV people on lower doses and have success for a long time.
I started alectinib on 5/1/2020. I’m coming up on 4 years and hoping for many more. I honestly wasn’t sure that I would make it this long. Grateful.

Hi Lisa, Wow 4 years amazing. I just went back on the alectinib and will be taking 3 pills 2x a day (900mg) instead of the 4. I am trying to have a good attitude. I postponed my return to work day for 4 weeks from today, hoping this is all sorted out by then. I think I can manage to work 3 days a week. But as you and I know each day is different. I will keep you posted. I hope you continue to have awesome results with the alectinib. It is a miracle drug.