Shortness of breath directly following durvalumab immunotherapy after finishing chemo radiation.

[Ssherry]

Hello. I’m seeking advice on behalf of my mother who is currently undergoing treatment for stage 3B NSCLC.  She completed seven weeks of chemo radiation with typical side effects such as fatigue, nausea, and loss of appetite.  She did really well.  A week and a half after completing chemo radiation she had Durvalumab immunotherapy.  That same day she had a 103F fever and went to the ER.  She has been out of breath since that day, four weeks now.  Debilitating shortness of breath.  All tests from the ER were clear.  No pnuemonitis, no blood clots.  
Her Dr. said it is side effects from radiation and should clear in 5-6 weeks after her last treatment.  She’s on week four with no improvement. Will she ever regain her breath?  Is there anyone who has had a similar experience? 
Thank you

[Karen_L]

IMO, she needs to see a pulmonologist, STAT. I had the exact same treatment— chemo-rads followed by durvalumab. After two infusions, I developed SOB and a cough. We held the durva and did steroids until things calmed down, then rechallenged with durva. I developed life-threatening pneumonitis and a PE. Only my pulmonologist understood the combination of symptoms I was experiencing. Steroids calmed the inflammation, but it took a high dose over a long time. 

I urge you to get in to a pulmonologist ASAP. “Debilitating SOB” is very serious in the circumstances you describe. 

[edivebuddy]

Shortness of breath is common but debilitating is not so much.  SoB Caused by radiation does normally clear in 4 to 6 weeks.  Is she still hospitalized?  What has her oncologist said?  Has someone from her care team looked at the ER imaging?  The timing may point to the immunotherapy but that's really up to the doctors.  I don't know if I'd put a lot of faith in an ER diagnosis when the same treatments will stabilize many causes of SOB. Was there not a pulmonologist on call at the ER?

 

 

 

 

[Ssherry]

Thank you for your responses.  We see her oncologist on Friday to check her status after two weeks of prednisone and supplemental oxygen.  It is helping, but she still gets SOB too easily.  A short phone call will leave her out of breath.  
Thank you for recommending a pulmonologist.  She did see a pulmonologist’s PA and her oncologist.  Her oncologist’s thinking is if the steroids help then the SOB is from the immunotherapy.  If they don’t, then it’s from the radiation and it could take months to clear up, if it does at all.  I’m hoping to post here again after I get more information on Friday.  

Karen I’m sorry to hear about your experience with durvalumab.  Thank you for sharing it with me.  You said the steroids calmed the inflammation.  Do you still struggle with breathing?  
 

 

[edivebuddy]

This is exactly why a specialist is best.  An oncologist thinks that if steroids help it's the immunotherapy.   I'm sure a radiation oncologist would treat moderate to severe radiation induced dyspnea with the exact same steroids.  

[Karen_L]

@Ssherry I do not experience SOB, unless my asthma is flaring, which it rarely is. And if it is, it's a reaction to something: typically, viral, bacterial, or  environmental (smoke or ozone are killers for me). 

My experience with who thinks what about the source of interstitial lung issues is that radiation oncologist and oncologist agreed you couldn't tell-- it could be induced by immunotherapy or radiation therapy, but that inflammation was inflammation and needed to be treated. I needed to get back on my bicycle so sought my pulmonologist's opinion. He brought all the worlds together. Plus he's an avid bicyclist so his support has been extra-special. 

[Ssherry]

Happy Thanksgiving everyone.  I am so grateful for a platform like this to share our experiences and to give and receive support from one another.  Thank you all very much.

Here’s an update on my mom. Her oncologist says she has inflammation in her lungs.  She has been prescribed a 6 week course of prednisone starting at 60 mg per day for the first week and tapering 10 mg every following week.  She is to sleep with supplemental oxygen and use during the day as needed.  She started her prednisone on November 8.  It was getting more challenging to breathe on the 40 mg, so she’s doing a second and maybe third week at 50 mg a day.  She has tightness in her chest on any exertion without the supplemental O2.  She is using supplemental oxygen sparingly as she does not want to become dependent on it. She uses it at night, but tries to power through during the day. 

Her pulmonologist from the previous appointment said she had mild emphysema, and she is to start pulmonary rehab on January 8.  I’m not sure what was discussed about the inflammation or if it was discussed. 

Karen I would love to hear more about your experience with SOB.  How long were you on steroids, and did you still experience SOB while on them?  
 

Thank you all so much for your time.

[edivebuddy]

"It’s important to understand that oxygen is essential for life, and we are all dependent on it. Her shortness of breath is a signal that her body needs extra help right now. Supplemental oxygen is not something you become 'dependent' on in a harmful way. Instead, it ensures her body gets the oxygen it needs to function and heal properly.

Using oxygen sparingly or withholding it can actually worsen her condition over time. When the body operates with low oxygen levels, it struggles to heal and perform vital functions. Paradoxically, by avoiding supplemental oxygen, she might be increasing the likelihood of needing it permanently in the future.