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Anyone have Shortness of Breath related to Lung Cancer treatments?

Posted by Speedy @speedy, Jan 2, 2022

For the past three months, I have been taking Gavreto for stage four nsclc and experience shortness of breath. I'm scheduled at Mayo this week for my first CT scan since starting the drug. I'm Interested in hearing from others if after taking Gavreto or compatible drugs if shortness of breath improved. Thanks

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Speedy | @speedy | Jan 3, 2022
In reply to @carlies "-And Alecensa is a treatment for ALK positive NSCLC… I get it-. So they’re not necessarily..." + (show)
@carlies

-And Alecensa is a treatment for ALK positive NSCLC… I get it-. So they’re not necessarily for SOB-. -Good luck with your treatment 👍.

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thanks

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Mentor
Merry, Volunteer Mentor | @merpreb | Jan 3, 2022
In reply to @speedy "I have been on the drug for three months with no significant side effects. Four hundred..." + (show)
@speedy

I have been on the drug for three months with no significant side effects. Four hundred mg were first prescribed and reduced to three hundred mg due to some fatigue. Mayo wants to see the results of a blood workup and the CT scan this Friday before making additional recommendations.

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Sounds like a great plan. Hope that you will let me know!

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Speedy | @speedy | Jan 4, 2022
In reply to @lls8000 "Hello, Shortness of breath has many causes, so it will be interesting to see what your..." + (show)
@lls8000

Hello, Shortness of breath has many causes, so it will be interesting to see what your CT shows. I’ve been taking a TKI/med for 21 months (Alecensa), at the time of my diagnosis my shortness of breath was caused by lymph node swelling in my chest, they were restricting the airway. I received relief in the first week of taking the drug. Each drug is different and the root cause of the shortness of breath can be different too.
Wishing you good news this week, and a long successful run on Gavreto.

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Thank you

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Speedy | @speedy | Jan 9, 2022

I have stage four nsclc lung cancer.
Friday I had my first CT scan since starting Gavreto three months ago. The scan showed a significant reduction in cancerous cells. "Dramatic" was the word used by the Radiologist to describe the improvement. I thank God and the outstanding Mayo staff.

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carlies | @carlies | Feb 22, 2022
In reply to @lls8000 "Hello, Shortness of breath has many causes, so it will be interesting to see what your..." + (show)
@lls8000

Hello, Shortness of breath has many causes, so it will be interesting to see what your CT shows. I’ve been taking a TKI/med for 21 months (Alecensa), at the time of my diagnosis my shortness of breath was caused by lymph node swelling in my chest, they were restricting the airway. I received relief in the first week of taking the drug. Each drug is different and the root cause of the shortness of breath can be different too.
Wishing you good news this week, and a long successful run on Gavreto.

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Could you tell me more about the TKI treatment? I’ve been hearing about it. Why was this treatment chosen? Is it a clinical trial? What was your (complete) diagnosis? Thanks.

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Mentor
Lisa, Volunteer Mentor | @lls8000 | Feb 22, 2022
In reply to @carlies "Could you tell me more about the TKI treatment? I’ve been hearing about it. Why was..." + (show)
@carlies

Could you tell me more about the TKI treatment? I’ve been hearing about it. Why was this treatment chosen? Is it a clinical trial? What was your (complete) diagnosis? Thanks.

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Hello!, I have a specific gene mutation that caused my cancer, verified by a biomarker blood biopsy. Mine is Stage IV, NSCLC, adenocarcinoma, ALK Positive. There is a targeted therapy (aka TKI) that is able to keep that ALK mutation under control, for a limited period of time. Eventually the cancer will outsmart the meds.
There are a number of cell mutations that have been discovered (RET, ROS1, EGFR, ALK), some have a targeted therapy that can help to counteract the bad genes.
The TKIs are specific to the specific mutations, so they aren’t for everyone. But they are a life extender for those of us with theses specific mutations.

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Speedy | @speedy | Mar 4, 2022

In February I asked if those with nsclc, and taking Gavreto experienced improved sob. Since that post, I decided to push myself and resume walking. The results have been amazing. I went from stopping every 200 feet to catch my breath to daily walks of 28 minutes without stopping. My breathing has improved dramatically, and I feel better physically. I gradually increase my pace and distance with each walk. I hope this helps those with episodes of sob.

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