Anyone being treated for fibrosis after proton radiation treatment?

Posted by andycapp @andycapp, Sep 20 9:58am

I went through concurrent chemo and proton radiation which ended on April 21. The radiation caused pneumonitis and I have been on prednisone since May. I started at 60 mg and am at 10 mg.
My oncologist referred me to a pulmonologist who has me on an anti fibrotic med with lots of adverse side effects.
Anyone else being treated for fibrosis?
My symptoms are continuing dry cough and shortness of breath. How do I know if it is caused by pneumonitis or by fibrosis?

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mamajite | @mamajite | Sep 20 2:43pm

hi andycapp - I'm glad you are getting to taper off of prednisone, but the anti fibrotic med does not sound fun. from what I've read pneumonitis and fibrosis are sort of opposite ends of severity of the same issue. what has your doctor said about the cough and shortness of breath? does anything give you some relief? hugs!

denzie | @denzie | Sep 21 8:28am

A clinician is the only one who can really tell you which condition you have. Meanwhile, to ease some of the inflammation that exacerbates the cough, try drinking some honey in a warm liquid.

andycapp | @andycapp | Sep 21 9:52am

In reply to @mamajite "hi andycapp - I'm glad you are getting to taper off of prednisone, but the anti..." + (show)

@mamajite Prednisone is what I have been given for the cough and shortness of breath. The symptoms increased when I tapered down to 5 mg and my doc had me go back to 10 mg. It hasn’t improved symptoms yet.

andycapp | @andycapp | Sep 21 9:55am

In reply to @denzie "A clinician is the only one who can really tell you which condition you have. Meanwhile,..." + (show)

@denzie I’ll give the honey a try. Thanks!

mamajite | @mamajite | Sep 21 1:32pm

In reply to @andycapp "@mamajite Prednisone is what I have been given for the cough and shortness of breath. The..." + (show)

@andycapp sorry to hear that. I don't know if it would help you, but I added a wick humidifier to my bedroom and it's been helpful for me. I was avoiding the standard ones bc they put a lot of particles into the air that I don't need to be breathing. but the wick version doesn't do that - and you can use tap water. I have the InvisibleMist one from Blue Air.

andycapp | @andycapp | Sep 26 2:05pm

My pulmonologist ordered a CT scan and the cancer is back! Nodules are growing and a new mass is detected in the other lung.
My oncologist offered a chemo treatment that could extend my life a little but I am choosing to forgo the treatment and it’s side effects so that I can enjoy my last weeks/months with family and friends.

mamajite | @mamajite | Sep 26 5:31pm

In reply to @andycapp "My pulmonologist ordered a CT scan and the cancer is back! Nodules are growing and a..." + (show)

@andycapp I'm sure that wasn't an easy decision to make, but I think I would have chosen the time off of treatment, too. I'm sorry the cancer came back so quickly. do you have a palliative care team? they can do a lot to keep you feeling as good as possible. hugs and prayers ❤️

edivebuddy | @edivebuddy | Sep 26 7:33pm

Oh man @andycapp this is such horrid news. I can't offer anything other than my hope and prayers you live this out on your terms. How's your breathing? On supplemental oxygen? I went to check the cost of one battery for my portable it was like 350 bucks. I bought a pure sign wave inverter that accepts my Ryobi batteries for 50 on Amazon and a 12 ah it's really 8 for another 50. I can stay outside all day now.

Peace be with you

andycapp | @andycapp | Sep 27 11:40am

I have an appointment with Palliative Care folks and yes, I’ve been prescribed oxygen. My O2 sat is still good at rest and I’ll be using the O2 when walking.
Thanks for your support!

daisydays | @daisydays | Sep 27 7:26pm

In reply to @andycapp "My pulmonologist ordered a CT scan and the cancer is back! Nodules are growing and a..." + (show)

Hello @andycapp
I can only imagine how difficult this all has been for you, your decision as well could not have been easy.
Yes, Enjoy your experiences with family and friends.
Positive thoughts and Prayers are being sent your way.
🤗 Hugs, Daisy

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