Margaret

Hi Charlene, I have radiation induced pulmonary fibrosis rather than IPF (different scarring pattern and often responsive to corticosteroids) and I was doing a PFT (not a C-PET), but the tech inadvertently managed to provoke severe breathlessness, hypoxia and coughing by noticing that I was only using my good left lung and favoring my bad right…[Read more]

Thank you for the information, Anna.  It’s good to see that someone is discussing ILDs other than IPF even though they are less common.

Margaret

Just like IPF where some people last a couple of years and others are still around nearly 20 years after diagnosis, RIPF has varied outcomes and is rarer so there is much less data.  Anna has good information that I have also seen in scientific papers (all that chemistry and physics I studied in college has come in handy.) There is no cure for…[Read more]

Hello all,

I was diagnosed with radiation induced PF in January of this year six months after completing radiation for breast cancer (no chemo.)  The pattern of fibrosis is different from that of IPF: linear and reticular (net-like) rather than honeycombing. Prednisone is the standard first-line treatment. Ofev (not Esbriet) has been approved…[Read more]

Hi Natalie,

Curcumin is known for being an anti-inflammatory compound and is in turmeric which is used in Indian cooking and medicine.  The problem with it and supplements which contain it is its lack of bioavailability, even when combined with piperine (in black pepper) which helps absorption.  I have seen the promising research studies, but t…[Read more]

Hi Natalie,

Maybe you could get hyperbaric oxygen therapy for your edema and it would have the good side effect of helping your lungs.  I asked my pulmonologist (who only treats ILD at a large research hospital) if they would ever follow up on hyperbaric oxygen for radiation induced PF in human clinical trials.  He told me it was very unlikely s…[Read more]

Hi Natalie,

I know that hyperbaric oxygen therapy can help with radiation induced fibrosis in tissue and bone (such as in breast tissue necrosis or head and neck cancer) but have never heard of it being used to treat pulmonary fibrosis in humans.  I have PF from radiation for breast cancer but my breast tissue was not affected.  Studies have b…[Read more]

I take alendronate once a week for osteoporosis. I’m careful to drink lots of water with it and wait before eating to avoid esophagitis. I haven’t had any jawbone problems but I take good care of my teeth.  My doctor has me take a year off every few years to try to avoid the bad side effects and so far it has worked.                            …[Read more]

I sleep with a wedge pillow and am fairly good about sticking to the suggested diet, omeprazole and anti-GERD protocols.  Four years ago I was hospitalized with a severe upper GI bleed.  I have never had any GERD symptoms but was diagnosed with esophagitis and Barrett’s esophagus.  I stuck to the recommendations of “The Acid Watcher Diet” by Jo…[Read more]

I was sent to the ILD clinic at the hospital by my radiation oncologist after my post radiotherapy pneumonitis showed up on a chest CT as pulmonary fibrosis.  It was a bit of a shock having to turn my mind from worrying about stage 2 breast cancer (with an 85% five year survival rate) to something worse.  My pulmonologist answered my questions a…[Read more]

I have been recently diagnosed with radiation induced pulmonary fibrosis after breast cancer treatment (on HRCT) which is a rare side effect. My pulmonologist was not very surprised as I had an upper GI bleed and was diagnosed with Barrett’s esophagus four years ago. I have never had any symptoms of heartburn, but started taking omeprazole then.  …[Read more]