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

Interested in more discussions like this? Go to the Lung Cancer Support Group.

@lls8000

@glendap56, welcome to Mayo Connect. It's great to hear that Tagrisso is proving to be effective for you. I hope that continues for many years. I'll be interested to hear what others have to say regarding vitamins and supplements.
I take a different targeted therapy, for a different gene mutation, ALK. I don't take much other than the occasional vitamin C or multi vitamin. In the past I have noticed that taking some supplements have had a negative impact on my liver or kidney counts. Be sure to check with your oncologist and keep an eye on those numbers if you start taking more. Did you take many supplements before cancer?

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Thankyou it’s great to be able to take part in these discussions. I started taking supplements when I got my cancer diagnosis while I waited for treatment and to try and help myself stay strong. However I appreciate the fact that I can take Tagrisso and immediately stopped the supplements in case they interacted with Tagrisso. I’m also interested in what vitamins and supplements others take and what effects they have on treatment and or the body.

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@glendap56

I’ve been taking Tagrisso for 4 months now for NSCLC stage 4 and doing very well. My last CT in January showed my tumour had shrunk and the associated lymph nodes and pleural effusion had all shrunk as well! I’m very interested to know which vitamins you take as I’m keen to start helping my immune system with supplements which won’t interfere with Tagrisso. Thanks very much.

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@glendap56, welcome to Mayo Connect. It's great to hear that Tagrisso is proving to be effective for you. I hope that continues for many years. I'll be interested to hear what others have to say regarding vitamins and supplements.
I take a different targeted therapy, for a different gene mutation, ALK. I don't take much other than the occasional vitamin C or multi vitamin. In the past I have noticed that taking some supplements have had a negative impact on my liver or kidney counts. Be sure to check with your oncologist and keep an eye on those numbers if you start taking more. Did you take many supplements before cancer?

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@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 very much now I feel at ease

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@babs1956

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.

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I’ve been taking Tagrisso for 4 months now for NSCLC stage 4 and doing very well. My last CT in January showed my tumour had shrunk and the associated lymph nodes and pleural effusion had all shrunk as well! I’m very interested to know which vitamins you take as I’m keen to start helping my immune system with supplements which won’t interfere with Tagrisso. Thanks very much.

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@whahoo

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.

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I hope you do well on the Tagrisso, I’m also on 40 mg I was on 80, I had the same issue my legs had all bruises on them. I hope we both do well on 40 mg. I wish you lots of good luck.

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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.

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@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?"

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@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?

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@nanajan26

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

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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.

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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

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