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Pnemonitis


Dona

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Hi everyone. I haven't posted for awhile but have questions for those who have experienced pnemonitis. 

I was dxd last July with Stage3 NSCLC.  I've completed 6 weeks of daily radiation and 5 rounds of low dose chemo concurrently.

Subsequent scan in Jan showed either abscess from infection or pnemonitis. I was put on steroids for a week to no avail. 

Bronchoscopy performed to determine if abscess was infection. Finding was negative so onco is saying pnemonitis.  

My onco was reticent about rxing more steroids stating it can cause new nodules to form?  I did have a nodule appear in left lung  which I am going to have biopsied soon. There are 3 small nodules in rlung showing minor growth

Questions for the group

1.  Has anyone heard that steroids can cause lung nodules

2.  Had Covid in Jan. Could this have caused new nodule in llung

3.  Other remedies for pnemonitis? Coughing is pretty severe at times, even causing vomiting occasionally.

I have new onco that is very impressive on paper, but my visits just feel transactional and not holistic enough for me, and I'm left feeling I'm not getting the whole picture. May be changing that real soon.

Any feedback is appreciated. Thx!

 

 

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Dona,

I’ve not read or heard that steroids cause lung nodules. Of course, COVID could be the culprit. 

Besides prescription medicine for coughing, try standing for a lengthy “steam shower”. I have coughing and irritation and my airway is very reactive to pollen. Time in a hot shower works for me. 

Also, ask your doc for albuterol. This is available in ampules that are delivered by a nebulizer (buy on Amazon) or it can be delivered by an inhaler. Other inhalers are also available but one generally needs to see a pulmonologist to ensure the right type and dose. That is likely a good idea if you haven’t yet seen a pulmonologist. 

Do everything you can to reduce dust and increase humidity in your home. I change my furnace filter very frequently and have hepafilter units throughout my home. I use a humidifier in the bedroom. Dust really affects my coughing so I try to eliminate it. 

My oncologist’s bed-side manner needed vast improvement but his skill and knowledge base about lung cancer was superb. 

I also suggest you see a radiation oncologist about your new nodules. Perhaps medical radiation can fry them into oblivion! (I’m a fan of precision radiation!)

Stay the course. 

Tom

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13 hours ago, Tom Galli said:

Dona,

I’ve not read or heard that steroids cause lung nodules. Of course, COVID could be the culprit. 

Besides prescription medicine for coughing, try standing for a lengthy “steam shower”. I have coughing and irritation and my airway is very reactive to pollen. Time in a hot shower works for me. 

Also, ask your doc for albuterol. This is available in ampules that are delivered by a nebulizer (buy on Amazon) or it can be delivered by an inhaler. Other inhalers are also available but one generally needs to see a pulmonologist to ensure the right type and dose. That is likely a good idea if you haven’t yet seen a pulmonologist. 

Do everything you can to reduce dust and increase humidity in your home. I change my furnace filter very frequently and have hepafilter units throughout my home. I use a humidifier in the bedroom. Dust really affects my coughing so I try to eliminate it. 

My oncologist’s bed-side manner needed vast improvement but his skill and knowledge base about lung cancer was superb. 

I also suggest you see a radiation oncologist about your new nodules. Perhaps medical radiation can fry them into oblivion! (I’m a fan of precision radiation!)

Stay the course. 

Tom

Tom, thx for your reply, you're such a good source of info and experience for me.

My frustration may just be my natural impatient disposition with this disease, that I want normalcy to return, especially since I've had this damn cough for a year now.

I was rxd albuterol last March when I first noticed the hemoptysis.  I followed the directions (every 6 hr) and it did help the breathing, but not really the coughing.  I stopped using it after a couple of months bc my breathing seemed to improve.

I believe u said u used it every 3 hrs, so I've gone back on the albuterol at that interval. Will try anything!

The coughing is not debilitating, mostly annoying, except as I posted, sometimes the cough becomes violent, especially before bed.

I've got a call in to my onco to see if he will rx steroids until I start immunotherapy or have to repeat chemo if my upcoming biopsy comes back malignant.   Because the radiation pneumonitis was first noticed back in Nov, I'm wondering if it's too late for improvement.

Wish I could keep my house dust free. I live on 3 acres in the country and it's very dusty. I recently purchased an air purifier, looks like it's time to purchase a second lol.

Tom, thx again for ur feedback, it's more useful to me from someone familiar with this journey, even more than the onco. 

Ps. I do have a pulmonologist, and radiation oncologist, along with my medical onco. My case is normally sent to the Tumor Board for discussions bc  my case is somewhat 'complicated'. I have no complaints about their credentials and happy they come to a treatment consensus, I just wish it didn't feel - at times - like one step forward, two steps back .

Thx again !

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Dona,

I'll relay one more strategy to abate irritation and reduce coughing from dust in one's home. Home heating systems tend to reduce the relative humidity. I suffered a long time from my "dust cough" until I invested in a whole home humidifier system. This has a dramatic effect. I purchased a digital combination thermostat and humidity indicator. I keep it on my desk and use it to tweak the the settings on my humidifying system. For me, dust season is in concert with heating season.

During the summer in Texas, the air is much more humid and dust becomes less of a problem inside our home. However, it is replaced by pollen. The only way to limit my exposure is to stay inside.

My pulmonologist suggests I use my Combivent inhaler before going out during pollen season. Two puffs before I venture out helps, but I'm limited to 4 puffs a day and the help is time limited. Isolation inside during the spring and fall pollen seasons in Texas is my only respite.

Stay the course.

Tom

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Hi Dona, 

How sucky for you.

I had radiation pneumonitis 6 weeks after finishing 30 rounds of radiation last year. Then I started immunology and the pneumonitis recurred. Immunology stopped for a couple of weeks while I did 60 mg. prednisone, stepping down to 10 from there. Then immunology was re-challenged and pneumonitis recurred.  After starting with 20 then 40 then 60 mg. of prednisone, I went as high as 80 mg.

At that point, I went to my pulmonologist to check in about what I thought was asthma (SOB, coughing that responded sort-of to rescue inhalers and nebulizer, but not really). He sent me for a CTA (CT with angio-something-or-other) and found a  PE (pulmonary embolism). He also dx PDL-1 inhibitor pneumonitis, which he described as "life-threatening" and ordered that I immediately stop durvalumab (immunotherapy) and never restart. He took over management of my pneumonitis from that point on. I tapered from 80 mg. of prednisone starting in September, finally completely coming off the damned stuff on Jan 1 2022. So, from starting with treatment by my oncologist in June to stopping on Jan 1, I was on high-dose steroids for seven months. Happy New Year!

I am concerned that you continue to cough. My pulmonologist described my situation as a "shot across the bow" and expressed gratitude that I responded to steroids.  I learned that some people with pneumonitis do not respond to steroids and that there are other medications that can interrupt it. 

I have never heard of a connections between high-dose steroids and nodules. Clearly, my team did not make treatment decisions based on that. At some point, a couple of nodules appeared around the treatment field and on the perimeter of the pneumonitis, but my radiation oncologist was not persuaded that they were cancer. She thought they were probably inflammation from all the activity in my lung. (Her official diagnosis: "Your lung is a mess.") Indeed, those nodules have faded. With every PET, I ask for a particular focus on nodules. She always looks. 

BTW, my case is also routinely reviewed by the tumor board, but they are focused on cancer and not on other lung conditions, even if those conditions are related to cancer treatment.

Has anyone been checking your pulse-oxygen level? My pulmonologist suggested I get a pulse-oximeter and regularly monitor my pulse ox level. If I ever have anything below 88, I have been instructed to go to the Emergency Department immediately. 

I urge you to seek a consultation with a pulmonologist. (Mine also sits on the tumor board here and I love him.) I suggest that you adamantly (but calmly and politely) express your discomfort, the frequency and intensity of your cough, and your concern about pneumonitis that doesn't seem to be resolving. I strongly suggest that you ask for treatment. I suggest you do not request a specific response or medications until you hear his/her treatment plan. At the end, if you have not been prescribed anything for immediate relief, ask if an inhaler of some kind could help.  It is NOT anywhere near normal (or acceptable) to cough until vomiting. I suggest you ask about other options with steroids as well as options that do not involve steroids. I also suggest you ask about the possibility of a pulmonary embolism. If you do not get further diagnostic testing, go to another pulmonologist for a second opinion.

Please call now for an appointment. Don't be afraid to insist. 

Sending you courage. 

Karen

 

 

 

 

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11 hours ago, Tom Galli said:

Dona,

I'll relay one more strategy to abate irritation and reduce coughing from dust in one's home. Home heating systems tend to reduce the relative humidity. I suffered a long time from my "dust cough" until I invested in a whole home humidifier system. This has a dramatic effect. I purchased a digital combination thermostat and humidity indicator. I keep it on my desk and use it to tweak the the settings on my humidifying system. For me, dust season is in concert with heating season.

During the summer in Texas, the air is much more humid and dust becomes less of a problem inside our home. However, it is replaced by pollen. The only way to limit my exposure is to stay inside.

My pulmonologist suggests I use my Combivent inhaler before going out during pollen season. Two puffs before I venture out helps, but I'm limited to 4 puffs a day and the help is time limited. Isolation inside during the spring and fall pollen seasons in Texas is my only respite.

Stay the course.

Tom

O Tom, I'm sorry you're forced to stay indoors during Spring and Fall. I'm not at that point now and only experience minor reactions to the pollen. I would go batty if stuck inside.

My onco's RN looked at my scan today and commented that it didnt look like pnemonitis, but an infection bc of the ground glass opacity. Go figure. She is however going to RX Mucinex for my cough. We'll see how that goes.  My biopsy and other scans happen the week of April 5th and just found out today the earliest my onco can schedule a visit to discuss findings is May 5th! I think that is just unacceptable for someone symptomatic. The RN suggested I contact Patient Relations to relay my frustration. The Cancer Ctr lost 2 pulmonary oncos and they have not replaced, causing an overload on existing oncos and delaying care for patients.

I may have to start interviewing a new care team.

Thx for your input!

 

 

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8 hours ago, Karen_L said:

Hi Dona, 

How sucky for you.

I had radiation pneumonitis 6 weeks after finishing 30 rounds of radiation last year. Then I started immunology and the pneumonitis recurred. Immunology stopped for a couple of weeks while I did 60 mg. prednisone, stepping down to 10 from there. Then immunology was re-challenged and pneumonitis recurred.  After starting with 20 then 40 then 60 mg. of prednisone, I went as high as 80 mg.

At that point, I went to my pulmonologist to check in about what I thought was asthma (SOB, coughing that responded sort-of to rescue inhalers and nebulizer, but not really). He sent me for a CTA (CT with angio-something-or-other) and found a  PE (pulmonary embolism). He also dx PDL-1 inhibitor pneumonitis, which he described as "life-threatening" and ordered that I immediately stop durvalumab (immunotherapy) and never restart. He took over management of my pneumonitis from that point on. I tapered from 80 mg. of prednisone starting in September, finally completely coming off the damned stuff on Jan 1 2022. So, from starting with treatment by my oncologist in June to stopping on Jan 1, I was on high-dose steroids for seven months. Happy New Year!

I am concerned that you continue to cough. My pulmonologist described my situation as a "shot across the bow" and expressed gratitude that I responded to steroids.  I learned that some people with pneumonitis do not respond to steroids and that there are other medications that can interrupt it. 

I have never heard of a connections between high-dose steroids and nodules. Clearly, my team did not make treatment decisions based on that. At some point, a couple of nodules appeared around the treatment field and on the perimeter of the pneumonitis, but my radiation oncologist was not persuaded that they were cancer. She thought they were probably inflammation from all the activity in my lung. (Her official diagnosis: "Your lung is a mess.") Indeed, those nodules have faded. With every PET, I ask for a particular focus on nodules. She always looks. 

BTW, my case is also routinely reviewed by the tumor board, but they are focused on cancer and not on other lung conditions, even if those conditions are related to cancer treatment.

Has anyone been checking your pulse-oxygen level? My pulmonologist suggested I get a pulse-oximeter and regularly monitor my pulse ox level. If I ever have anything below 88, I have been instructed to go to the Emergency Department immediately. 

I urge you to seek a consultation with a pulmonologist. (Mine also sits on the tumor board here and I love him.) I suggest that you adamantly (but calmly and politely) express your discomfort, the frequency and intensity of your cough, and your concern about pneumonitis that doesn't seem to be resolving. I strongly suggest that you ask for treatment. I suggest you do not request a specific response or medications until you hear his/her treatment plan. At the end, if you have not been prescribed anything for immediate relief, ask if an inhaler of some kind could help.  It is NOT anywhere near normal (or acceptable) to cough until vomiting. I suggest you ask about other options with steroids as well as options that do not involve steroids. I also suggest you ask about the possibility of a pulmonary embolism. If you do not get further diagnostic testing, go to another pulmonologist for a second opinion.

Please call now for an appointment. Don't be afraid to insist. 

Sending you courage. 

Karen

 

 

 

 

Karen, thx so much for your input.

I will be calling my pulmonologist tomorrow to get his input on the scan. I figured the tumor board discussed all aspects of findings but maybe not. My onco's RN is rxing Mucinex for me to take at night. Altho it's not a suppressant, it will loosen the mucus that the cough is trying at expel.  We'll see how that goes.

I do have a pulseOx and readings at mid to high 90s. 

Thx for the advice on contacting pulmonologist separately, I know my onco is looking to.treat the disease and maybe not focusing in side effects. I just think he's overwhelmed with cases. The Cancer Ctr lost 2 pulm oncos and they have not replaced, so more cases are being absorbed by existing staff. Unacceptable to me. The RN suggested I contact Patient Relations to not only express my frustration with the care Im receiving, but to perhaps help other patients with their care. Maybe a squeaky wheel will motivate them to bring in more staff.  Or, maybe I'm being really naive in thinking my call will effect change. We'll see.

Thx again for your input! Not sure I want steroids now if your pnemonitis returned after taking them.

Dona

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17 minutes ago, Dona said:

 

Thx again for your input! Not sure I want steroids now if your pneumonitis returned after taking them.

 

Well, the pneumonitis didn't recur on its own. Each time, it was triggered by something, either radiation or immunology. 

I'm glad your pulse-ox is good. I'm *really* glad you're reaching out to your pulmonologist-- your cancer center sounds like it means well, but that it's limping along. I pity the oncology staff and feel for their patients-- especially you! If you decide to squeak, I hope it makes a difference. 

Please keep us posted.

Karen

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I agree with everything that Tom and Karen have said, and I believe that a pulmonologist is an essential partner on your medical team. I think of it this way:  medical oncologist is for cancer, radiation oncologist is for radiation and pulmonologist is for lungs. My oncologist referred me to my pulmonologist for a cough, and he diagnosed allergies caused by Tagrisso (easily treated with Claritin). I had pneumonitis from radiation that lasted about a year, but my case did not require treatment. 

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  • 2 weeks later...

Hi

This is a little late to your post, but I did want to share a bit.  I had similar treatment for stage 3b, chemoradiation.  started durva a month after ending proton radiation, and i believe the pneumonitis started within that first month.  i was essentially ignored in my reporting of symptoms.  at first just a bit of congestion, then ultimately nightly fever, night sweats, low O2 and increased difficulty breathing.  I always had about a 98 02 prior.  Anyhoo, when the CT was done, i was dx'd with pneumonitis.  ground glass opacity is one of the characteristics.  there was a nodule, and consolidation and GGO.  i gotta lot going on ;)  it was not in both lungs, it centered around the area of radiation, so it was attributed to the proton therapy.  this is common.  just wanted to make the point about the GGO.  i am on steroids - man, is my house clean - was at 40 and on my request bumped it to 60 and noticed an immediate improvement.  I am now attempting to step down by 5 mg increments.  tried 10 - more congestion.  

perhaps contacting the CEO of the hospital, cc'ing the head of oncology, about the delay in follow up? 

all the very best to you.

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Hi Dona, Have you seen your pulmonologist yet?  I notice that where you live looks like it's on the edge of the Central Valley. And you say it's dusty. Valley Fever is endemic in the Central Valley (where it got it's name). When I was being diagnosed with NSCLC my pulmo looked at my CT scans and asked where I grew up. Central Valley! She said I had lung scarring that looked typical of Valley Fever. I was never diagnosed with it but as a chils I did have a couple of episodes of pneumonia, which are likely presentation of VF.   (The VF scarring wasn't related to my NSCLC) I wonder if VF could be a cause of any of the inflammation in your lung?  I found my pulmo excellent at interpreting CTs; she looked at the actual scans and not just the radiologist reports.

Look forward to hearing from you. Best of luck.

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