Anyone taking Tagrisso for Lung Cancer?

Posted by babs1956 @babs1956, Jan 27 5:30pm

Is There anyone taking Tagrisso And feeling well on it. I’m taking 40 mg of Tagrisso I have a little bit of Dizziness. I was on 80 mg but I developed a lot of bruising on my legs so my doctor put me On 40 mg. Is this a good drug?

Thank you so much,
Barbara

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whahoo | @whahoo | Jan 29 4:59pm

I’ve been on 40 mg since July 2023. 80 mg caused serious skin issues. I looked like one big red bump. Some
People have great longevity on Tagrisso. Others, not so much. We go from CT scan to CT scan hoping for the best.

Matthew K | @flusshund | Jan 28 4:11pm

@judy0707, I don't know where the three or 3.5-year idea originated. MD Anderson told me something similar almost 4 years ago, but that's forever in today's rapidly evolving targeted therapy world. My oncologist and I are both members of the International Association for the Study of Lung Cancer and maintain a plan for what we'll switch to if my cancer develops resistance. I can tell you we're on the 3rd plan in the last two years! (Amivantamab + Lazertinib). Who knows what will be available if and when I start to show resistance? His plan is, "If it's still working, why stop?"

judy0707 | @judy0707 | Jan 28 12:46pm

In reply to @flusshund "@babs1956, Tagrisso has been the proverbial godsend for those of us with certain types of EGFR..." + (show)

@flusshund

@babs1956, Tagrisso has been the proverbial godsend for those of us with certain types of EGFR mutation. It's a small molecule targeted therapy that has dramatically extended both PFS (progression-free survival) and OS (overall survival). My lung cancer (LC) metastasized to my brain in 2020, which is when I started Tagrisso. Four and a half years later, I'm still doing well on it and am currently cancer-free. I have two friends who have been on it for over 7 years and are both still active. One is a personal trainer!

My experience with Tagrisso is that the initial side effects, like the ever-popular diarrhea, die off after a few months. That's how long it takes the body to adapt to it. Hopefully, your side effects will also disappear over time.

The one thing I learned later that I wish I'd known early is that the most important thing is to decide what time of day to take it and then stick to that time to maintain a constant level of the drug in your body. Initially, I chose two hours after breakfast and two hours before lunch, and that's still when I take it. Consistent time is more critical with some people than with others, but it turned out I'm one of those people. I had a slight recurrence about a year ago that we successfully treated with 1 round of targeted radiation. My friend Larry had a similar experience. Neither of us has had any other recurrence since the first one.

Targeted therapy is the future of lung cancer treatment; new ones are being developed almost daily! It's actually a challenge to keep up with them all. You can learn more at lungevity.com, go2.org, and, if you're ready for a deep dive, you can join the International Association for the Study of Lung Cancer and see the same information your oncologist is reviewing. Lungevity and GO2 are much more user-friendly. 🙂

Welcome to the club no one wants to belong to, where there are more of us living our lives with lung cancer than ever before.

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Thank you so much for sharing your experience, I am on stage 1B and on Tagrisso for 14 months now, my biggest concern is my lips burning and tired. I thought the maximum time for taking Tagrisso is 3.5 years your body would resistance to the medication, how come your friends can take it for 7 years?

babs1956 | @babs1956 | Jan 28 12:25pm

In reply to @nanajan26 "I am one of the unlucky ones who developed pneumonitis after 7 weeks on Tagrisso. Super..." + (show)

I am so very sorry, but there’s a lot of other medications out there that are just as good as Tagrisso. Don’t give up.

nanajan26 | @nanajan26 | Jan 28 11:38am

I am one of the unlucky ones who developed pneumonitis after 7 weeks on Tagrisso. Super steroids cleared up the problem but I can't take it so waiting to see oncologist on the 6th for next plan of action. Totally bummed

babs1956 | @babs1956 | Jan 28 11:32am

In reply to @firefly33 "Thank you. It’s 80mg. I am on stage IV, the drug works well for me except..." + (show)

I’m stage I’ve too, I’m dealing also with a Holostic Dr in Connecticut. She’s detoxing me, getting rid of all heavy metals in my body. Hoping this works

firefly33 | @firefly33 | Jan 28 10:53am

In reply to @babs1956 "I’m so sorry to hear that. Are you on 80 mg? I was getting bruises on..." + (show)

Thank you. It’s 80mg. I am on stage IV, the drug works well for me except the weird lung tightness and some mild side effects. Considering only a couple of months to a year expected to live initially, I am very grateful for what Tagrisso does for me.

babs1956 | @babs1956 | Jan 28 9:55am

In reply to @flusshund "@babs1956, welcome to "the new normal" -- a phrase I detest in general, but in the..." + (show)

I’m so happy to hear that your nails and hair are doing great. That’s wonderful. Right now Tagrisso is the only meds I’m taking I take a lot of vitamins, my oncologist knows all the vitamins I take and he said they’re good. They wouldn’t interfere with Tagrisso. Thank you so much.

Matthew K | @flusshund | Jan 28 9:20am

In reply to @babs1956 "Also, my platelets are low. Is that bad? The number is 119." + (show)

@babs1956, welcome to "the new normal" -- a phrase I detest in general, but in the case of our bloodwork, it's true. On Tagrisso, we'll have low red blood cell count, white blood cell count, low platelet count, low platelet volume, and low lymphocyte count (a type of white blood cell.) It's utterly normal on Tagrisso.

Also, some of us have trouble with splitting nails. Early on, I'd swear I split a nail while wearing gloves. I now take 20 mg of Biotin daily to strengthen my nails. I cleared it with my oncologist, who first assured me Biotin doesn't interact with anything else I'm taking. You should check with your oncologist before adding any meds. Now, my worst problem is that my hair and nails are growing like weeds!

babs1956 | @babs1956 | Jan 28 9:19am

In reply to @firefly33 "I have been on Tagrisso 7 months and developed some lung tightness. My doctor has no..." + (show)

I’m so sorry to hear that. Are you on 80 mg? I was getting bruises on my legs and he reduced me to 40 mg.

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