Margaret

Dr. Strum – Thank you for your reply. I have a math/science background and am comfortable reading scientific papers even though I occasionally have to look up the definition of a medical term. While limited lung fibrosis from radiation is not unheard of the progressive “recall” RIPF is rare (for breast cancer 3/1000 radiation patients.) Not…[Read more]

CTs are done more frequently if there is a reason they are needed. My doctor is monitoring several slowly growing pulmonary nodules so a CT is done every 3 to 6 months. My last one showed returning infiltrates before I had any worsening symptoms so I went back on oral prednisone for a while.

Mary Frances – My PF is radiation induced (breast…[Read more]

Arthur, Talking causes SOB and coughing for me. I had to retire from teaching because of it. My O2 levels are in the low 90s. Inhaled corticosteroids and gabapentin help with the coughing. I try to remember to pause between sentences when talking.

I too loved my teaching job but had to retire at the end of the 2022 school year after being diagnosed with PF (radiation induced) five months earlier. The talking required caused SOB and frequent severe coughing. I still miss working terribly but I had no choice since I developed cough syncope (briefly passing out caused by the violent coughing.)…[Read more]

O2 levels can change in an instant. During my last PFT a coughing fit caused me to pass out. My levels are generally in the low 90s but dropped to 40 on the monitor and recovered in about 15 seconds according to the tech. I thought my cough was fairly well controlled (25 episodes a day rather than the prior 125) but my pulmonologist increased my…[Read more]

Prednisone and inhaled corticosteroids really help my inflammation and my cough. I was taking 2000 iu vitamin D daily but my blood levels were low so I now take 4000 iu daily. If you don’t know what your level is you can ask your doctor for a blood test to check.

Cooking fumes are harmful to the lungs. When I was younger I worked in a commercial kitchen where the fumes were much worse than in a home kitchen. I have a good range hood and open a nearby window no matter what the weather to help cut down on the indoor pollution.

Wearing a respirator mask can help but it impedes my breathing too much.

Is the biopsy being done to see if you would be eligible for a lung transplant? If so, the risks might be worth it for you. My pulmonologist told me he  recommends biopsies only if they will be used to determine treatment because of the risk involved. Good luck with your decision.

After several months on high dose prednisone my pulmonologist tapered me down to a corticosteroid inhaler (Flovent HFA.) It targets the lungs so the bad systemic side effects (high blood sugar, bone thinning, insomnia) are eliminated and the SOB and cough remain improved.

Lunch bags and small coolers come in a variety of shapes, sizes and styles. They have handles or straps for carrying and are easy to clean. Some have a variety of compartments to separate equipment like a nebulizer from prescription bottles. It’s amazing how the medications seem to multiply but I’m glad to have them.

Hi Chris, RIPF is radiation induced pulmonary fibrosis (a side effect of radiation therapy to the chest for cancer.) There are over 200 types of interstitial lung disease and consequently lots of acronyms and a variety of treatments. You would have to check with your doctor to see if those drugs were a problem in your case. My pulmonologist warned…[Read more]

Everybody needs to make vax decisions based on their own situation.  I have had every vaccine going because any respiratory infection, even a cold, could start the RIPF progression again. I also have to avoid about 300 medications and intubation (like for surgery) since they are progression triggers in RIPF, too. I’m still living the lockdown…[Read more]

Hi Chris,

Given the history of mold and dust exposure it could be Hypersensitivity Pneumonitis. HP can be acute or progressive. Removing the irritant can stop the progression which might explain the small amount of fibrosis. Corticosteroids can also help.

I have radiation induced pulmonary fibrosis caused by breast cancer treatment. While the…[Read more]

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]