Pneumonitis

Vera66

Has anyone been diagnosed with pneumonitis from medication? If so can it return, even if the medication has been discontinued? I was involved in a clinical trial for breast cancer at high risk of recurrence, and was prescribed everolimus (could have been placebo, but based on my bloodwork/symptoms, the doctor was sure I was getting everolimus.) I was on it for a year, developed pneumonitis and the drug was discontinued. The only symptom I had of pneumonitis was chest/lung pain that was quite severe. I was prescribed steroids and did fine. I had a ct scan in July which said that the pneumonitis was resolving. For the last few weeks I am having chest pain again, with a mild cough. The chest pain is nowhere near as severe as the last time, but it has me worried. Can the pneumonitis come back? Is it just likely that your lungs are more vulnerable after an episode of pneumonitis and then you have pain when you have a mild cough? Of course my mind also goes to the dark place of lung recurrence, could it be a recurrence that causes symptoms so soon after a clear ct scan in July where the doctor specifically said "no evidence of metastatic disease in the lungs"? The symptoms are so mild that I am hesitant to call my oncologist, as I am sure she is starting to see me as a hypochondriac (which I am afraid I have become). I am sure that if breast cancer was taken out of the equation I would not be thinking much about this at all as the pain and cough are generally mild. Any feedback would be much appreciated.

trinigirl50

hi Vera66

Pneumonitis can become chronic. I would definitely call your MO, not because of mets but because it is important to resolve/control pneumonitis before it becomes chronic.

I developed pneumonitis due to chemo and it was resolved after steroid and IV antibiotics but it did leave me with very minor scarring. I would not hesitate to call my MO if I had chest pain at all with a cough.

Vera66

Thanks Trinigirl50. I suppose that you are right. I just hate to start the whole process. More tests, more waiting, more stress. I guess that is how it is for all of us now.

trinigirl50

It may well be nothing, but you mention its been going on for weeks not days, so given your history of pneumonitis I would not take any chances.

trinigirl50

BTW yes indeed I have become a hypochondriac. But getting better at not freaking out over everything now.

New normal. Sigh.

Vera66

When did you start freaking out less? I feel like I did fairly well during treatment, but in the year since I have finished treatment I have been an absolute wreck. Freaking out over everything, anxious all the time. I am two years out in December. I'm praying it gets better soon. I'm driving myself and my family crazy.

trinigirl50

I started freaking out less after my third year (I figured with my very lousy stats that if I didnt progress within 2 years that was a significant step). I would probably not be as scared except my ONC does tumour markers and mine go up with every little thing. The Letrozole has exacerbated my arthritis, so I am constantly battling bursitis and frozen shoulder etc etc, and they all make my tumour markers go up when they flare.

I think if I didnt know about the markers, I would have moved on faster.

Also, and this is a big deal. The more you look at research and go on sites (this one included), the more "involved" you become with BC. So the less you google, the better. Come here only if you have a valid query or want to share good news to help others.

I definitely need to move on. It is making me more anxious rather than less.

But that's just me. I am sure it is different for others. I do believe though that the further out you get, the better it gets.

Vera66

You know, that is really good advice. Thank you for that. I spend way, way too much time researching. I want to give back and help other women, because of all of the women who have helped me, but I don't think I can do that until I get my own emotions under control. Thank you. You have really helped me today.

trinigirl50

your welcome. I just made myself a promise to stay away from all things BC for ome month and see how that goes. Good luck to you.