Anyone had Concurrent Radiation and Chemo Therapies?

Posted by andycapp @andycapp, Mar 4 10:56am

Lower Left lobectomy is off the table. Surgeon said that even if I survived the surgery, my quality of life would be severely diminished (limited lung capacity).
So I will begin concurrent proton radiation and chemo therapies on March 9.
Has anyone here gone through these concurrent therapies? Any suggestions?

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Profile picture for andycapp @andycapp

@lls8000
I’ll tell ya Lisa, I have mixed feelings.
Yesterday, I received the radiologist report about the 5/15 CT scan.
There are some positives to take away in so far as the impact on the mass. However, my lungs are in bad shape (fibrosis and emphysema and new pneumonitis indicators). I have to be a realist and recognize that the treatment bought me some time but the likelihood of a cure and/or long term survival doesn’t look very promising.

Anyway, I’m hoping that my red blood cell numbers improve so that by breathing improves.

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@andycapp, Mixed feelings are to be expected. These things are never all that straight forward. But we can take one day at a time, and for now, focus on the good that's in front of you. There will be plenty of time for the additional complications later.
I'm hoping that your breathing gets better too.

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Profile picture for Lisa, Volunteer Mentor @lls8000

@andycapp, Mixed feelings are to be expected. These things are never all that straight forward. But we can take one day at a time, and for now, focus on the good that's in front of you. There will be plenty of time for the additional complications later.
I'm hoping that your breathing gets better too.

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@lls8000 I notified my team about concerns of possible pneumonitis (shortness of breath and persistent dry cough). They sent me to oncology critical care and CT scan confirmed pneumonitis. So. I’m now on prednisone (40mg per day for 2 weeks then tapering).
I’m on 3rd day and see improvement of breathing but not coughing but it’s early. I’m also taking pearls and delsym for the cough. Fingers crossed.

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Profile picture for andycapp @andycapp

@lls8000 I notified my team about concerns of possible pneumonitis (shortness of breath and persistent dry cough). They sent me to oncology critical care and CT scan confirmed pneumonitis. So. I’m now on prednisone (40mg per day for 2 weeks then tapering).
I’m on 3rd day and see improvement of breathing but not coughing but it’s early. I’m also taking pearls and delsym for the cough. Fingers crossed.

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@andycapp kudos to you for catching it early - I hope the meds help you feel better soon! The last time I had pneumonia going up to the 160mcg Breyna inhaler (rather than the 80mcg) helped the most.

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Profile picture for mamajite @mamajite

@andycapp kudos to you for catching it early - I hope the meds help you feel better soon! The last time I had pneumonia going up to the 160mcg Breyna inhaler (rather than the 80mcg) helped the most.

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@mamajite I’ve been referred to a pulmonologist. She ordered another CT scan which indicates that original mass is stable and size mildly decreased. However, upper left lobe nodule increased in size (1.0x1.2 compared to previous 0.6. Pulmonary fibrosis and ground glass opacities improved.
Pulmonologist has prescribed anti fibrotic med (Perfenidone) to hopefully minimize the ongoing fibrosis. Thankfully, I am titrating off of Prednisone. I was on 60 mg for over two months and have titrated gradually to 30 and hope to be off of the steroid by 9/24.
Anybody on anti fibrotic meds? I’ve been told to expect diarrhea, nausea and sun sensitivity.
Onward and upward!

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Profile picture for andycapp @andycapp

@mamajite I’ve been referred to a pulmonologist. She ordered another CT scan which indicates that original mass is stable and size mildly decreased. However, upper left lobe nodule increased in size (1.0x1.2 compared to previous 0.6. Pulmonary fibrosis and ground glass opacities improved.
Pulmonologist has prescribed anti fibrotic med (Perfenidone) to hopefully minimize the ongoing fibrosis. Thankfully, I am titrating off of Prednisone. I was on 60 mg for over two months and have titrated gradually to 30 and hope to be off of the steroid by 9/24.
Anybody on anti fibrotic meds? I’ve been told to expect diarrhea, nausea and sun sensitivity.
Onward and upward!

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@andycapp I hate taking prednisone, so I am celebrating with you on getting to titrate off of it. perfenidone sounds like it comes with its own challenges, but I hope it will help your breathing. let us know how it goes. hugs!

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Profile picture for mamajite @mamajite

@andycapp I hate taking prednisone, so I am celebrating with you on getting to titrate off of it. perfenidone sounds like it comes with its own challenges, but I hope it will help your breathing. let us know how it goes. hugs!

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@mamajite Yeah, I haven't had a good night's sleep since being on prednisone! I'm also dealing with fatty deposits in my cheeks, stomach and buffalo hump! That steroid is a double edged sword. Cant wait to say goodbye to it!
I should be starting the anti-fibrotic on 8/5. I'll let you know how the perfenidone side effects go. It's lways something 🙂
Thanks for your support!

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