[Margaret]

While my PF has a different cause (radiation induced) I take prednisone to reduce inflammation and help with the cough. It does have side effects but there are ways to reduce them. I take alendronate for bone loss (there are other meds for this as well) and eat a low carb diet to prevent blood sugar issues. If prednisone is helping your breathing other methods to reduce its side effects might be something to consider.

[Margaret]

I had low grade fevers along with SOB and severe dry cough when I was diagnosed with radiation induced PF from breast cancer treatment. The scarring pattern is different from IPF and imaging over time showed it spreading out from the radiation field. I take prednisone for the RIPF and no longer have a fever unless I’m ill with something else. Hopefully your dad’s doctor will have some answers.

[Margaret]

I have a severe dry cough originating deep in my lungs from PF (radiation induced) that would cause me to pass out momentarily from a large drop in oxygen. It happened during a PFT when that was seen on the monitor. The cough is now pretty well controlled by Flovent.

I have had both bronchitis with a wet cough higher up and pneumonia with a wet cough deep in my lungs which felt like drowning, neither of which was helped by Flovent. Albuterol helped the bronchitis cough and I had to wait for the pneumonia to clear for that cough to stop. I can distinguish between the different causes which is a help but coughs in general are tough to treat. It’s very much a matter of trying possible remedies to find one that helps you.

Margaret

[Margaret]

There is a website pneumotox.com where you can enter the generic name of a drug and see any pulmonary interactions. Those with an ILD side effect listed should be investigated. The statin I take is not my PCP’s first choice for that reason.

[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 surprisingly it is more common in lung cancer patients but they often don’t have the survival expectation of bc /Hodgkins patients. There are fewer than 10 of us who post on this website and besides me one poster on breastcancer.org whose fibrosis stayed within her portal.

My pulmonologist is part of an 8 doctor ILD team who generally treats the autoimmune, hypersensitive and other miscellaneous patients. He always tells me that mouse lungs are not human lungs but listens to ideas I have read about. He has prescribed high dose inhaled corticosteroids to help control my severe cough (lung distortion from fibrosis exposes nerves to air.) I suggested this after reading about proposed clinical trials in Mexico and China which never happened due to lack of enrollment that postulated inhaled steroids would prevent progression. Hopefully they will work for this and at any rate my cough is much improved. US clinical trials for ILD generally exclude cancer patients and cancer trials exclude ILD patients so it’s a catch-22 situation.

Once again, thanks for taking time out of your busy schedule to give us your thoughts.

[Margaret]

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 cancer) and steroids are the treatment for it as they are for PF caused by hypersensitivity. They are used for IPF exacerbations but don’t stop that type of fibrosis. High dose prednisone causes serious side effects including high blood sugar, osteoporosis, weight gain, glaucoma, high blood pressure and ulcers. Hopefully I will be able to get back on inhaled corticosteroids soon since those have fewer side effects.

OFEV is approved for RIPF if steroids stop working but I haven’t heard of anyone in this situation having success with it. That might just be because progressive RIPF is pretty rare.

[Margaret]

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.

[Margaret]

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.) When this happened during a PFT the monitor showed O2 levels dropped from the low 90s to 40. My pulmonologist treated the cough aggressively with oral and inhaled steroids, gabapentin and codeine. This, in addition to not speaking so much and slowing down, has really helped.

I’m fortunate that I was past retirement age and eligible for Medicare so I am better off than many. What bothered me most was that PF made the decision for me. I was able to work through cancer treatment so I hadn’t expected this. My retirement is very different from what I had planned. PF takes over your life in ways you could never imagine.

[Margaret]

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 meds to help cut the frequency more. I had no idea how dangerous this was. Symptoms are not always indicative of O2 levels.

[Margaret]

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.

[Margaret]

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.

[Margaret]

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.

[Margaret]

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.

[Margaret]

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.

[Margaret]

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 me since many of them are cancer drugs. There is a website which lists them for anyone interested.

http://www.pneumotox.com

 

[Margaret]

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 life and wear an N95 mask if I have to be near other people. It’s a bummer but the alternative (which I was facing when I was first diagnosed) is way worse. I’m looking forward to spring when I can socialize outside again.

[Margaret]

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 cause and scarring pattern are different it acts more like HP than IPF. The  two lower lobes of my right lung are riddled with PF in a reticular (net like) pattern. I was on high dose prednisone for several months which stopped the progression. I now use an inhaled steroid (Flovent HFA) to help with the severe dry cough I still have. It seems that the fibrosis distorts the lung tissue and exposes nerves to the air, hence the cough. The frequency has gone from about 120 to 20 times a day which is a huge improvement. My PFTs are just below normal. I get SOB on exertion but am OK if I pace myself.

While things are stable right now the progression can be triggered again which is why my pulmonologist keeps an eye on it with CTs and PFTs. It sounds like your doctors are doing the same. If the cough is bothersome you might ask your doctor about trying an inhaled steroid.

Margaret

[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 lobes. She called in my pulmonologist who was able to observe this. The tech and I both feared something terrible had been triggered but my doctor was pleased to see exactly what was happening. I needed a shot of cortisone and O2 for a few hours but I did recover. I stayed in the pulmonary ILD clinic (no ER thankfully) where there were plenty of medical personnel to keep an eye on me while my doctor was seeing other patients. I thought I was doing well compared to my condition at diagnosis: I don’t need oxygen, have SOB only on exertion, and was having just 20 coughing fits a day rather than the original 120. My doctor, however, thought I could do better by learning to use the undamaged tissue in my right lung as well.

I was able to see how the coughing fits sent my blood pressure and heart rate sky high and my O2 low, not good for my heart. The doctor explained that my body was instinctively protecting itself by keeping me from breathing deeply. He increased my current medication (inhaled fluticasone propionate) to the maximum dose and gave me some breathing exercises to start a week later after the higher dose had kicked in. I am now able to walk on more varied terrain, have only 2 or 3 coughing fits a day, and am beginning to work on stairs, hills, and carrying things. My QOL has improved and I imagine my heart is less stressed. It took making things worse to make them better.

I understand your anxiety knowing what can happen, but your pulmonologist is familiar with your medical status and will be prepared to intervene appropriately whatever occurs. Hopefully your doctor will be able to use what he observes to get you back to your pre-COVID baseline. I sympathize with you there, too, since I was hospitalized with COVID in Feb of 2020, a year before my breast cancer diagnosis, when it first arrived in the US.  (A local family spent a few days in Wuhan when changing planes on a trip to Australia bringing the virus to my rural community.) During my PFT episode I never had that terrifying drowning feeling that I still have nightmares about. I hope your C-PET test goes well and yields information that improves things for you.

[Margaret]

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

[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 the fibrosis that has already occurred, but prednisone can slow/stop its spread and clear some of the infiltrates (consolidation or ground glass opacities) that accompany the out-of-control fibrosing process. RIPF usually starts in one lung and can stay in the radiation portal, move out of the portal and spread through the same lung, or spread to the other lung as well. Everyone’s case is different.

Prednisone does have some bad side effects (increased blood sugar, osteoporosis, glaucoma, weight gain) which is why pulmonologists monitor you, adjust the dose, and decide if the pros outweigh the cons.  I am switching to Flovent HFA, an inhaled steroid, which targets the lungs directly and does not cause as many systemic problems. My pulmonologist does not know if it will work as well but figures it is worth a try in my case. Ofev was FDA approved in March of 2020 for any kind of chronic progressing fibrosing ILD so it is now an option for RIPF that does not respond to steroids.

RIPF is sneaky in that it can stop progressing and the chain reaction can be set going again years later by many cancer treatments, other drugs, severe respiratory infections, or intubation for anesthesia. That’s why some people first develop symptoms a long time after radiation.  When you know you have it you or your doctor can research the side effects of any planned medical treatments and decide whether the risks are worth it. I was supposed to have surgery on my other breast to even things out but I would rather be lopsided than have my breathing get worse.  If I had another life-threatening problem requiring general anesthesia I might have to take the chance and live with the consequences.

Exercise, healthy eating, and having a pulmonologist who is up-to-date on RIPF is the best way forward.  It’s wonderful to be able to connect with others in the same boat on this forum since we are a small subset of both cancer treatment and ILD.

 

[Margaret]

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 for use if steroids don’t work. Like Natalie, I am doing well on prednisone. It’s good to know that there is now another option if that becomes ineffective.

RIPF is a rare side effect of breast cancer treatment (3/1000) and a bit more common after lung cancer treatment. Initially it seemed unfair that  trying to cure one potentially fatal disease caused another. However, at least I know why this has happened as opposed to those who develop IPF for no known reason.

As Anna wrote, we need to move forward and focus on the good things in our lives and our support for each other.

[Margaret]

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 they were not done in humans and my ILD pulmonologist (who is also a researcher) always says “Mouse lungs are not human lungs.”                                                                                                                                                                                                                    Memorial Sloan Kettering Cancer Center has a section on their website about integrative medicine which gives information on herbs and supplements:                                                                                        https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbs/search?letter=%23

Margaret

 

 

[Margaret]

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 since breast cancer radiation induced PF is a pretty rare subset of a rare disease.  Most of his patients have IPF, connective tissue disorders or environmentally caused ILD. Radiation injury is obviously much more common in lung cancer patients, but they are different in that the cancer is also in the lungs and they don’t have the expected survival time of most breast cancer patients.  It’s easy to cause PF with radiation in a lab, but not so easy to find mice with IPF or scleroderma.

Good luck with following up on this!

Margaret

[Margaret]

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 been done in mice that look promising, but my pulmonologist reminded me that mouse lungs are not human lungs when I asked about this.  Maybe this will become a treatment in the future.

Margaret