Experiences with

Pneumonitis

Hi all I have pulmonary fibrosis caused by hypersensitivity pneumonitis & am now on oxygen at 4l moving around I may have the opportunity to travel by car from Leicestershire to the Alps in France next March & am just trying to work out the logistics for taking/getting O2 delivered.

I have hypersensitivity pneumonitis, pulmonary fibrosis and Hypoxia.

While our case report details the possible causes for the patient’s dyspnea and associated radiographic findings that included radiation pneumonitis (RP), radiation recall pneumonitis (RRP), and drug-induced pneumonitis, we would like to additionally add the consideration of lymphangitic carcinomatosis

The inflammation in my alveoli was therefore Hypersensitive Pneumonitis. We discussed the new allergen and how my symptoms correlated with the encroaching construction work.

I've been going thru a lot of treatments, I began with ibrance and faslodex, then Afinitor and aromasin, that stopped because I got pneumonitis, the dr then switched me to kisquali and letrozole. After more progression I was on Zeloda.

I've recently started to take nintedanib for my fibrosis which I have in both lungs, I've had hypersensitive pneumonitis for some years now (I'm 70) and also take prednisolone but I'm struggling with nausea and diarrhea and would like to know if this improves after a few weeks/months.

She had pseudo obstruction last month ( is on pruease 2 mg daily with crafting 30 ml night - has been with decreasing benefit) and then aspirated though it was mild pneumonitis .

hi guys does anyone have this diagnosis ? Any advice please

Hi all, I’ve failed on both Enhertu (which shrunk my cancer but cause pneumonitis) and now Trodelvy (did not work at all - had major progression in first 3 months). I now have extensive liver mets and new mets in my spine & pelvic bone.

My husband was diagnosed with Hypersensitivity Pneumonitis last week. Can I ask if anyone has managed to identify the allergen responsible for their HP? Is there a test that can be done?

I'm wondering if anyone else on here developed pneumonitis from Enhertu, how long you had to pause treatment, and what your next steps were? Thanks and best wishes ...

We have tried pretty much everything over the last 6 years, ADT, docetaxel, Zytiga, radiation, keytruda (ended badly with severe pneumonitis), Xtandi and recently just timed out on Cabazitaxel. We through whatever “herbs and spices” we can at it too when there are no contraindications.

Hi all My Dad was unfortunately unable to join the DB-1311 trial because he developed extreme pneumonitis from Keytruda that landed him in the ICU for 2 weeks about 2 years ago, so he is no longer able to use any immunotherapy treatments moving forward.

Hi not been on here for a long time as I've had nothing to say ,but I've a question I was diagnosed with non specific interstitial lung pneumonitis /hypersensitivity spectrum interstitial lung disease in 2020 heavy scaring to both lungs my consultant was brilliant in the first 2 yrs scans breathing

This was followed up with durvalumab ( discontinued after 5 sessions due to pneumonitis, and have been in corticoids ever since. My breathing & coughing has become progressively worse since, along with developing facial neuralgia.

Did you had pneumonitis? If so, could you return to the medication? Thank you so much. Raquel is sending kisses to everybody, this group has helped us a lot in the last 5 years! Eduardo

ITU admission respiratory type 1 failure, pneumonitis. PSA 35 Dec 2022 - Radiotherapy pelvis. Mar 2023 - Enteritis. May 2023 - Radiotherapy shoulders and rib. Sept 2023 - Jan 2024 - Enzalutamide. Sept 2023 - Radiotherapy C7-T4, T7-T9.

Hi all I have Pulmonary Fibrosis caused by Hypersensitivity Pneumonitis. Now on Nintedanib (taken with food) & Mycophenolate. Im struggling with fatigue but also nausea & have lost my appetite. Any tips would be very welcome??

I developed a bronchial cough, likely due to lung inflammation or pneumonitis while on both Kisqali, then Ibrance. My onco stopped the ibrance and put me on antibiotics, to see if it was bacterial. When that didn’t kick it out, she put me on prednisone, which did work.

• Grade 3 toxicity (pneumonitis) was higher in the consolidative therapy group (10% vs 1%) https://www.prostatecancer.news/2019/04/is-there-oligometastatic-state-for.html