Pneumonitis

[cbert]

  What are the symptoms of pneumonitis.  Is there pain involved.  If so, where is the pain.  How long does it last. Does if remit with steriod 

 

 

 

 

 

 

 

 

 

 

 

If so, how  long did it take and what steroid dose was effect

[Judy M2]

I had pneumonitis for about a year after chest radiation. For me it wasn't painful, it did not need treatment and resolved on its own. But I know that people get their pneumonitis treated with steroids. Are you seeing a pulmonologist?

[Tom Galli]

cbert,

Welcome here. Here is information from the Mayo Clinic on pneumonitis symptoms and causes.

There could be pain and depending on the cause (especially with deep breathing or coughing); it might be a lengthy symptom. For example, many of us experience radiation induced pneumonitis after a course of fractional general radiation (generally 6 weeks long). I recall having several courses of steroids that lessoned my symptoms. But, my symptoms resolved in time.

Stay the course.

Tom

[Karen_L]

Hi cbert,

I had life-threatening pneumonitis and was treated with high-dose steroids for many months. The amount of steroids prescribed depends on the patient and their circumstances. If the situation doesn't resolve with steroids, there are other meds that can be used.

You don't say why you're asking; I hope if you are asking for yourself, you are seeing a pulmonologist. Pneumonitis can be very serious. 

Karen

[cbert]

On 9/12/2022 at 3:53 PM, cbert said:

  What are the symptoms of pneumonitis.  Is there pain involved.  If so, where is the pain.  How long does it last. Does if remit with sterioIf so, how  long did it take and what steroid dose was effect

 

[cbert]

Just now, cbert said:

Thank you all for replying.  I am having a little trouble negotiating this site.  This reply is for all.  I have had chemo and 6 weeks of proton radiation and finished up in mid July.  I had my first infusion of Imfinzi in early August, and the new symptoms started about two weeks later.  Yes, I am seeing a pulmonologist.  I was started on 20 mg Prednisone last week and it was increased to 40 mg.   It is not possible to tell whether the cause is radiation or the Imfinzi, but the bet is on radiation since this fits perfectly with the expected time line.  The oncologist says I cannot get steroids and Imfinzi at the same time. 

I initially experienced  increased coughing and a lot of severe pain in the front and back of the chest.  The pain is 360 degrees around my mid chest.  The coughing is better, and the pain in the front of the chest is less.  There is still some aching in front, but the bad chest pain is only with movement, e.g., turning over in bed.  The ache in the back is constant.  I think this could be muscular and have started on a muscle relaxant, but I don't think it is doing much.  Doctors don't seem to acknowledge or understand the pain issue.  The immuno may be restarted in a few weeks.  Based on what you kind folks have said, this could go on for a long while.  I was mostly interested in finding out if others have experienced pain like I have had.  

 

 

 

[cbert]

On 9/13/2022 at 12:02 PM, Tom Galli said:

cbert,

Welcome here. Here is information from the Mayo Clinic on pneumonitis symptoms and causes.

There could be pain and depending on the cause (especially with deep breathing or coughing); it might be a lengthy symptom. For example, many of us experience radiation induced pneumonitis after a course of fractional general radiation (generally 6 weeks long). I recall having several courses of steroids that lessoned my symptoms. But, my symptoms resolved in time.

Stay the course.

Tom

I had read other things on pneumonitis, but, Tom, they were not as scary as the Mayo information!  I seem to be the poster child for side effects.  I had every one of them during chemo.  Now this.  Thanks, though, for sending me the link.  Forewarned is forearmed.  

[Pstar]

As far as your pain, you should make an appt with palliative/ supportive care to see if they can’t help you. I had upper back pain that radiology and thoracic ignored but p/s care helped me immensely.

[Karen_L]

You describe my experience to a T. My initial pneumonitis was probably a response to the radiation treatments. My extended, very serious bout was a result of the PDL-1 inhibitor, i.e., imfinzi (Durvalumab, in my case). I was pretty sick. I went as high as 80 mg. of prednisone for that. If I had not responded, I would have been admitted to the hospital for other treatments. Tapering from that high a dose was a bear & took forever. 

If you notice sleep disruption, take the steroid in the morning. If that doesn't help, get s sleep aid from the doc-- it was essential for me.  

The pain may actually be a result of the coughing. It's possible for people to cough so hard they break a rib. (This from my pulmonologist who I saw for asthma a zillion years ago.) But you must keep the pulmonologist up-to-date on the circumstances.

Do you have a pulse oximeter? Get one. If you notice increased shortness of breath, call the pulmonologist immediately with that info, plus the oximeter reading. I ended up with a pulmonary embolism during that exciting period of my treatment. Because it was at the time of a Covid surge-- ugh, National Guard in the ER-- I refused to go to the ER. That was supremely stupid on my part. As the pulmonologist said, very sternly,  "We've had a shot across the bow with this one." In other words, don't be a dope about your medical condition and follow directions, dammit. I am now a reformed and obedient patient. Mostly. 🤪

I wish you luck. Be vigilant and if you notice any change for the worse, or if you stop improving, you must call and ask about increasing the dose of the steroid. I'd call the pulmonologist. At the start of the worst of it, I asked mine to clarify who was my primary contact for the pneumonitis and he was very clear that he was. That helped streamline the care, I think. 

Good luck. Keep us posted. 

 

[cbert]

I sincerely thank you all for responding and sharing your experiences.  I am seeing a pulmonologist every two weeks, and the oncologist has halted the Imfinzi for the time being.  The pulmonary says the oncologist is my go-to doc, but they are communicating with each other.  I am now on 40 mg steroid.  I agree the pain could be from coughing as there are no broken ribs.  My primary prescribed a muscle relaxant, but I do not think that is helping.  My cough seems to come from my head, not my chest.  I have had runny nose and post-nasal drip from the outset in November.  No one seems interested in explaining that.  It is the drip that makes me cough.  It is not allergies.  OTC cough medicine (Delsym) seems to help.  I cannot take codeine. The only pain meds I have been offered are morphine and fentanyl.  I do not want to go there; I can take the pain if it does not get much worse.   I am hoping this is from radiation and not Imfinzi as I am Stage III and this seems like my last and best hope; however, it is almost impossible to know what the cause is as it could be radiation, chemo, or Imfinzi.  The docs are betting on radiation as they think it is unlikely that one dose of Imfinzi would bring this on and it fits the timeline for radiation.  I am keeping a close watch as this has scared the beejeesus out of me!  I am giving my current care givers until December to figure this out.  If they don't, I am going to either Mayo  or MD Anderson for a consult.  That won't be easy as I live in Maryland.  I will go sooner if it gets worse.  

[Karen_L]

8 hours ago, cbert said:

 I am hoping this is from radiation and not Imfinzi as I am Stage III and this seems like my last and best hope;

No, no, no. It is NOT your last best hope. It's simply the treatment you're on right now, and the reactions your body is having to it. There are other things out there for treating your disease. You're just not in a place to be getting those yet, not until the pneumonitis is calmed down. (And, P.S., the docs may never be able to definitively say what caused it. The way I look at it is that some of us are just lucky.) (not)

I continue to feel like you and I are living parallel lives. I have coughed so much from post-nasal drip for the past five weeks that I have a significant case of almost-laryngitis. Currently am being treated for a sinus infection, which is helping a lot. I was advised to take Mucinex, which, to my surprise, has also helped a great deal. 

Now that I think of it, there's nothing that says you have to wait to seek a second opinion. (I mean, what else are you going to do while you try to ignore pain, stop coughing, and cope with having cancer?) You'll get through this. But if the coughing and pain continue, know that you deserve to feel better. I like Pstar's suggestion of consulting a palliative care team. That word, "palliative," has some negative connotations, but's not just for people who are dying, it's a support service for people in treatment who are experiencing pain and other issues. 

Take care. Keep us posted!

[Justin1970]

Hi Cbert 

So sorry your going through this, I really hope you start feeling better soon, try and keep strong and positive, I still have a chest pain in the very centre which I'm sure is due to the radiotherapy to the lymph nodes but it is worrying, goodluck with everything we will all be thinking about you all the best Take care Justin 

 

[Judy M2]

Runny nose and post-nasal drip are indeed allergies. Tagrisso has given me nasal allergies that I take a Claritin for every day. @cbert, ask your doctors if you can take Claritin.