Did you have Pneumonitis??

[Anna69]

Hi,

In March I was diagnosed with a non small cell inoperable lung cancer.  I was given a very aggressive primary chemoradiation  treatment after which, thank God, I was declared NED.  However, they have put me on a maintenance immunotherapy called Durvalumab.  After four infusions I got shingles in the head and eye and as soon as I recovered from that  I acquired pneumonitis which lasted over two months.  Doctors treated it with a high dose of steroids which blighted my life with many side effects.  Three months after contracting pneumonitis I am still short of breath and sweat profusely when doing any activities.  Can anyone share their pneumonitis story, please?

By the way, I live in London, England, so perhaps names of medications are different.

Best wishes,

Anna69            

[Judy M2]

Hi Anna, welcome here. Although I didn't get pneumonitis, my story sounds a lot like yours:  inoperable NSCLC, chemoradiation, side effects from steroids and shingles in June (on my torso). Since March I've been on a targeted therapy for my EGFR gene mutation and luckily don't have side effects from that. 

I'm sure that others in this forum who have had experience with pneumonitis and/or Durva will weigh in soon. 

Before I retired I worked for a British company and had the pleasure of visiting its London office in 2010. I really enjoyed my short time there and would love to go back someday. One of my favorite cities. 

I'm hoping you start to feel better. 

UPDATE: I just looked back at my July PET/CT scan and see that I did have postradiation pneomonitis but I never needed treatment for it. I recall having shortness of breath but not to extent of needing my inhaler. My October scan just shows left paramediastinal airspace disease (with an SUV of 2.8), which neither my oncologist nor pulmonologist seems concerned about. Even since October I'm breathing much better and feel almost normal. Hope your pneomonitis resolves soon. 

[Tom Galli]

Anna,

Welcome here!

You may want to read into a very extensive information source about Durvalumab on this forum. Follow this link to do so. This discussion was started by Robert Maccaulay, a Canadian who received the drug as a trial. It contains about 2 years of first hand discussion about the drug, its effectiveness and side effects. It is still active, so if you have questions, don't hesitate to post them on the Durvalumab discussion page.

Stay the course.

Tom