Anyone had Concurrent Radiation and Chemo Therapies?

@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!

@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!

@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!

@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.

@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.

@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.

@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.

@andycapp, Wishing you well in your continuing recovery. Your body will appreciate this break in treatment! This can leave people with a range of emotions; relief that it's over, and fear that it may not be the right decision. Are you comfortable with this decision?

@andycapp
My oncologist told me that I’ve graduated. No more treatment.
She said that the 10% improvement odds of going through immunotherapy isnt worth the risk of damage to other organs (since imuno therapy previously attempted caused damage to my liver and colon).
So, it’s now recover and scan every three months.

Yesterday I finished 30 of 30 proton radiation treatments and 6 weeks of concurrent chemotherapy.

Ive been told that the next few weeks will be tough as far as adverse side effects go. Has anyone gone through the post treatment side effects? What can I expect?