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What happens when Tagrisso stops working?


Mariejt

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Hello! I was diagnosed with stage 4 adenocarcinoma (both lungs, lymph nodes and bones) 6 months ago and after a scary few weeks, found I have the EGFR T790M mutation and was started on Tagrisso. I have responded very well to the meds, however, I know Tagrisso stops working after some period of time which differs for everyone. I am feeling better, but feel like I have a black cloud hanging over me waiting for the medicine to stop working. I know small progression can be treated with radiation. I also have 60% PD-L1, but was told that EGFR mutations don't respond to Keytruda though perhaps Keytruda and chemo is a possible treatment. 

Have any of you had Tagrisso stop working? If not and you are on Tagrisso, how do you deal with the knowledge that it will stop working? Thank you in advance for you help.

Marie

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Hi Marie-

I am an ALK mutant taking an inhibitor drug very similar to Tagrisso.  We all learn to live with the uncertainty of what to do when our magic pills stop working which can be YEARS from today.  So for now I live life everyday, laugh and try to do at least one fun thing each day.   While I’m no longer working, my life as a continuous learner continues.  I’m into tai chi ( but not very good at it yet so who cares? )  and learning this whole Food as Medicine thing in the hopes of increasing the length of the inhibitor ride.

Ask your onc what the Plan B is if it gives you some peace of mind. (sometimes EGFRs go onto a chemo cocktail successfully) like Carbo/Taxol.  My onc gave me Plan B & C with the hope in another year or two there’s going to be a next gen inhibitor around  

With all the EGFR research ongoing, clinical trial participation is a strong possibility.  I’d like to think that when the time comes, there will likely be a new & better treatment even possibly a cure on the horizon. 

Try not to let the black cloud take up too much space.   

You might find some more specific answers on the EGFR Facebook page.

Michelle

 

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Hi Marie and welcome here!  Michelle has given you some excellent advice.  I hope you'll keep posting and reading here and I hope you'll have a long life with as little black cloud as possible over you.

Bridget O

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On 4/26/2019 at 1:55 PM, Rower Michelle said:

Hi Marie-

I am an ALK mutant taking an inhibitor drug very similar to Tagrisso.  We all learn to live with the uncertainty of what to do when our magic pills stop working which can be YEARS from today.  So for now I live life everyday, laugh and try to do at least one fun thing each day.   While I’m no longer working, my life as a continuous learner continues.  I’m into tai chi ( but not very good at it yet so who cares? )  and learning this whole Food as Medicine thing in the hopes of increasing the length of the inhibitor ride.

Ask your onc what the Plan B is if it gives you some peace of mind. (sometimes EGFRs go onto a chemo cocktail successfully) like Carbo/Taxol.  My onc gave me Plan B & C with the hope in another year or two there’s going to be a next gen inhibitor around  

With all the EGFR research ongoing, clinical trial participation is a strong possibility.  I’d like to think that when the time comes, there will likely be a new & better treatment even possibly a cure on the horizon. 

Try not to let the black cloud take up too much space.   

You might find some more specific answers on the EGFR Facebook page.

Michelle

Dear Michelle, 

I realize this post is from April 26, 2019, but WOW! was it helpful for me TODAY!  I am going to savor your supportive message and remember your words of wisdom!  Thank-YOU!  Susan

 

On 4/26/2019 at 1:55 PM, Rower Michelle said:

 

 

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thank you for this topic.

I was diagnosed with a walnut sized tumor in my lungs and extensive metastasis in other parts of that lung and throughout my back in November, 2019. Tagrisso did indeed turn out to be a miracle drug for a period of time. I actually went into full remission for about 7 months. The cancer did return in the lung only in February, so I got about 12 months out of the original usage.

I went through intensive radiation, and now I am awaiting my follow up scan next month to see how much of the new cancer we got. In the mean time I remain on Tagrisso. If we got all of the cancer with the radiation, then I will remain on Tagrisso until the next re-emergence.

I was told if the cancer returns in a few other areas we probably will go after it with radiation. If it is more extensive, then probably will have to switch over to immunotherapy or chemo.

Say strong everyone!

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Eric, they are coming up with all kinds of personalized treatments for progression on Tagrisso. Check out  LUNGevity's EGFR Resisters Lung Cancer Patients Group on FB to learn what others are doing. There are clinical trials too. Hopefully the radiation you've had will do the job. 

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