Pnemonitis

[Dona]

Hi everyone. I haven't posted for awhile but have questions for those who have experienced pnemonitis. 

I was dxd last July with Stage3 NSCLC.  I've completed 6 weeks of daily radiation and 5 rounds of low dose chemo concurrently.

Subsequent scan in Jan showed either abscess from infection or pnemonitis. I was put on steroids for a week to no avail. 

Bronchoscopy performed to determine if abscess was infection. Finding was negative so onco is saying pnemonitis.  

My onco was reticent about rxing more steroids stating it can cause new nodules to form?  I did have a nodule appear in left lung  which I am going to have biopsied soon. There are 3 small nodules in rlung showing minor growth

Questions for the group

1.  Has anyone heard that steroids can cause lung nodules

2.  Had Covid in Jan. Could this have caused new nodule in llung

3.  Other remedies for pnemonitis? Coughing is pretty severe at times, even causing vomiting occasionally.

I have new onco that is very impressive on paper, but my visits just feel transactional and not holistic enough for me, and I'm left feeling I'm not getting the whole picture. May be changing that real soon.

Any feedback is appreciated. Thx!

 

 

[LouT]

Dona,

Glad to hear from you again.  As you may already know most nodules (~60%) are benign and are caused by infection, irritants, scar tissue, or factors other than LC.  Of course as an LC patient we must always take new nodules seriously.  I personally cannot answer the question about steroids causing nodules but pneumonia is certainly a condition that can cause the inflammation such as Covid can surely result in nodules forming.  It sounds to me that this oncologist is not inspiring the confidence in you that makes you comfortable.  If I were you I'd express my concerns to them and see what his/her response is.  If you aren't satisfied with what you hear then you should seek a second opinion.  As lung cancer patients we don't have the luxury of a less than fully supportive medical care team and, in my personal opinion, confidence in your oncologist is the cornerstone of my treatment team.  

Regarding the coughing.  A number of years ago I came down with a severe case of pneumonia had to go to ER for help breathing and took the usual meds (antibiotics and steroidal inhalants), but weeks later still had an annoying cough.  In my case the doctor order a syrup I took (I believe it contained codeine) for a bit that really seemed to help.  Perhaps it was the healing process as well, but my coughing was much reduced while taking it.  Please speak with your doctor, there should be things they can recommend.

Lou

[Dona]

14 hours ago, LouT said:

Dona,

Glad to hear from you again.  As you may already know most nodules (~60%) are benign and are caused by infection, irritants, scar tissue, or factors other than LC.  Of course as an LC patient we must always take new nodules seriously.  I personally cannot answer the question about steroids causing nodules but pneumonia is certainly a condition that can cause the inflammation such as Covid can surely result in nodules forming.  It sounds to me that this oncologist is not inspiring the confidence in you that makes you comfortable.  If I were you I'd express my concerns to them and see what his/her response is.  If you aren't satisfied with what you hear then you should seek a second opinion.  As lung cancer patients we don't have the luxury of a less than fully supportive medical care team and, in my personal opinion, confidence in your oncologist is the cornerstone of my treatment team.  

Regarding the coughing.  A number of years ago I came down with a severe case of pneumonia had to go to ER for help breathing and took the usual meds (antibiotics and steroidal inhalants), but weeks later still had an annoying cough.  In my case the doctor order a syrup I took (I believe it contained codeine) for a bit that really seemed to help.  Perhaps it was the healing process as well, but my coughing was much reduced while taking it.  Please speak with your doctor, there should be things they can recommend.

Lou

Lou, thx for your reply. I was hoping you and/or Tom would respond with feedback.

I do have a call into my onco about rxing steroids until I begin immunotherapy or back on chemo if my biopsy comes back malignant.  But I'm also wondering if too much time has elapsed since pnemonitis was first suspected (last Nov) and now I'm basically dealing with scar tissue from radiation. I will however ask about an rx cough suppressant.  The cough is not crippling,mostly annoying, but oftentimes violent. My poor lungs are trying to clear the congestion, so they're still working!

I've only met this particular onco twice, so not sure I've given him enough time. I definitely will jump ship if I'm not feeling like I'm receiving the care I deserve. Have done it before and will do it again.

There just have been red flags, mostly on the administrative side, which I'm told is bc they're so overwhelmed with clients. That sounds like a management problem to me,right? Hire more doctors.

When I left a msg today for my doc, the medical receptionist had never heard of pneumonitis and I had to spell it for him. (!)

Then, my scan scheduling was delayed bc the hospital showed Medicare as secondary and bc  Blue Cross showed primary, of course they denied the biopsy, CT and MRI. This coding error has gone unchanged for over 6 months; with each visit, I'm promised that they have corrected the insurance. These little gaffes are making me question the Cancer Center's reliability. Anyway, sorry for blathering.

Thx again for the reply, hope you're doing well!