1. < Lung Cancer

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.

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)
@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

Jump to this post

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.

REPLY
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?

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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?"

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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.

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1 reply
babs1956 | @babs1956 | Jan 29 6:16pm
In reply to @whahoo "I’ve been on 40 mg since July 2023. 80 mg caused serious skin issues. I looked..." + (show)
@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.

Jump to this post

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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glendap56 | @glendap56 | Feb 7 7:47pm
In reply to @babs1956 "I’m so happy to hear that your nails and hair are doing great. That’s wonderful. Right..." + (show)
@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.

REPLY
1 reply
babs1956 | @babs1956 | Feb 8 8:42am
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.

Jump to this post

Thank you so very much now I feel at ease

REPLY
Mentor
Lisa, Volunteer Mentor | @lls8000 | Feb 10 1:44pm
In reply to @glendap56 "I’ve been taking Tagrisso for 4 months now for NSCLC stage 4 and doing very well...." + (show)
@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.

Jump to this post

@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?

REPLY
1 reply
glendap56 | @glendap56 | Feb 10 10:08pm
In reply to @lls8000 "@glendap56, welcome to Mayo Connect. It's great to hear that Tagrisso is proving to be effective..." + (show)
@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?

Jump to this post

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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codym | @codym | Feb 11 2:30pm

I found this thread helpful seeing what others have been experiencing and some of the longer term success that many have had. I was diagnosed with adenocarcinoma over a year ago. Luckily I have the EGFR mutation and I've been on Tagrisso for a little over a year now. I also have infusions of pemetrexed and initially carboplatin every three weeks. I saw a slight decrease in tumors at my initial scan and now every scan since than has been stable. My first two months or so of treatment was just Tagrisso. I didn't notice any issues initially but the occasional diarrhea, but nothing too bad. Now I'm pretty tired feeling most of the time but I am guessing that is from the pemetrexed and not the Tagrisso. I'm still able to do all of my hobbies and most of the time when I get moving it gets easier. One issue I've been having is high liver enzymes, they are always above normal and have seen them as high as double the max range, has anyone else had liver enzymes above normal? I worry that I might have caused some damage prior to my diagnosis. I spent a year in agony with horrible headaches from the cancer. Weekly ER visits because of the headaches and they finally found something that worked some of the time(indomethacin) but after taking it for a month I was told it was bad for my liver as much as I was on and for how long. They advised I not take any more indomethacin but as my only relief from unbearable pain I continued. Finally I got a second opinion at Mayo about the headaches and within hours they found the cancer causing the pain with an MRI of my brain. Thankfully, I finally got a second opinion at Mayo in Rochester. Anyways, from what I understand Tagrisso will only last into my early 40s before I need to try something new. Trying to stay optimistic that something will be available when things start going the other way, that's probably the hardest part.

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