Pneumonitis
I have been MIA for a while. Starting this new topic for those DX’d with pneumonitis while MBC.
October 2020, my TX was changed to Afinitor and Exemestane.
In November, I started to wake up at night feeling like I couldn’t breath. Afraid to lay back down, I would get up and sleep sitting up in my recliner. Due to CoVid, hubby and I started our days checking SpO2 values. Pulse Ox showed in 90s. Found comfort in that.
By Christmas, I felt breathing was a real chore. Pulse Ox in the upper 80s. Clearly heading in the wrong direction. I already had scans scheduled for 12/29 so didn’t seek treatments during Christmas holiday timeframe.
Wasn’t sure how I was going to get to the scans on 12/29 as walking that far seemed improbable due to lack of sucking in oxygen.
Managed to get through tests.
Sleeping in my recliner so being flat in bed was scary.
Dr appointment the first week of January. By now pulse ox was in the low 80s.
Dr said scans looked like CoVid. I told him I thought it was pneumonitis from Afinitor as I had no other CoVid symptoms and I don’t leave the house due to pandemic lock downs. Dr was willing to consider pneumonitis but said scans looked like CoVid. I was told to get a quick CoVid test after leaving doctor’s office and to get the longer CoVid test the next day. But in the meantime, Dr put me on 5 days of 60 mg of prednisone. Dr said if it’s pneumonitis, steroids will help.
Both CoVid tests came back negative. 5 days of Prednisone, I was feeling much, much better and full of energy. I could breath! Pulse ox back up to 96!!
2 days after finishing the steroids, I rapidly declined. Pulse ox down in the 70s if I moved around. Awful feeling. I called doctor’s office. They told me to go to ER.
I called an ambulance. Pulse ox at 69. Argggg
Arrived at ER where I was out on oxygen. Oh my gosh, was that glorious. I could breath!!! ER tested me for CoVid. (3rd test in a week). It was still negative. I told ER doctor what I thought was going on. I was taken for chest CAT scan. Pulmonologist called. I was admitted.
Spent 5 days in the hospital on oxygen. Got chest x-rays daily. Put on 2 antibiotics and IV Solumedral (steroid). On oxygen, SpO2 stayed above 95 but without oxygen, SpO2 was 79-84. Hospital had CoVid rule - no visitors so it was a long 5 days
Hospital got me off IV steroids and ordered home oxygen. I went home with oxygen tube with medical home care bringing me home oxygen concentrator. Put on prednisone where doseage was lowered every 5 days until dosage was to 0 mg.
SoO2 not improving. Went to pulmonologist. He said recovery will take time. He continued my oxygen treatment at least through May. I have another CT scan before May and then see pulmonologist in May.
I am now living with a 25 foot tethered tube to home oxygen concentrator. Tube isn’t long enough to go anywhere other than part of kitchen, family room, and bathroom.
I have a portable oxygen concentrator to get me to doctor stuff.
I thought I was doing better when just chilling as I was able to keep SpO2 up to 95 on my own. Walking around is a different matter. Can’t keep SpO2 up at all without oxygen. After getting 2nd CoVid shot, I can’t breath on my own at rest once again. Sigh.
Whining a bit here— cancer isn’t causing any pains right now. This would be a great time to get out of the house, maybe take a short trip but being on tethered oxygen, makes having a life seem like a dream. /whine. I am very grateful to have the oxygen readily available. The feeling of sucking in air but not getting any is terrifying.
I am at 2 liters oxygen at rest and 3 liters when moving. And constantly making sure family doesn’t trip over my oxygen tube.
Pulmonologist and oncologist both believe I did have/do have pneumonitis from Afinitor.
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Hi DodgersGirl, wow, what an ordeal
I was dx'd with radiation induced pneumonitis in late Feb but it is nothing like yours. Because it's from radiaition it's affecting only a region of my lung and causing only mild shortness of breath on exertion and a bit chest tightness when taking a deep breath. I did a course of oral steoids& a quick taper, during which my symptoms essentially went away. Finished steroids on March 21 & gradually over 2 weeks my symptoms returned - again super mild, my SpO2 is 96-98, occasionally dipping to 94.
Biggest issue for me is that when I'm on steroids I have to be off immunotherapy. I got a dose of immunotherapy 2 weeks ago but today's was cancelled after I reported the return of mild symptoms. I get to actually talk to the MO tomorrow and see whether he thinks I need to do steroids again or can just coast like this and wait for it to heal (& resume my immunotherapy). Fortunately chemo is not impacted at all so I've been continuing to get that throughout but I'm really worried about missing immunotherapy.
DodgersGirl, what treatment are you on for your cancer now? I'm assuming you stopped the affinitor?
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Dogers Girl,
I am sitting here gobsmacked by your account, horrified and angry. As someone who is recovering from Ibrance-induced pneumonitis, I empathize with with you, even though my experience was far less grueling, I hope you heal steadily and completely, and can be untethered from oxygen soon. Yes, it's great that you can get help with breathing at home. Yes, it's great that someone finally paid attention to your theory. But it's frightening and infuriating to me that it took so long for medical professionals to tie your illness to Affinitor, particularly since pneumonitis has been a recognized as a possible side effect of Affinitor for years, with a bullet point in the package insert (yes, I looked it up.)
My much-respected oncologist of many years did not recognize that I was sick from Ibrance, even though I told him my symptoms and how lousy I felt. It took a daily diary and a scary CT scan to get his attention and a referral to a pulmonologist. All I can conclude is that I must have been his first patient to develop the rare-but-well-publicized lung inflammation from the drug, but I admit my long confidence in him is shaken.
All doctors who prescribe powerful medications should be aware of their most life-threatening possible side effects, and always consider them when a patient presents with symptoms. To do otherwise is unconscionable.
Tina
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Tima2– I pointed out to my oncologist that pneumonitis was a known SE for Afinitor. He had not seen it before in any of his patients but did listen to me enough to prescribe the first round of steroids even though he didn’t think pneumonitis was going to be the culprit but he knew I had researched my symptoms and had drawn a possible conclusion that couldn’t be ignored. He did the 2 CoVid tests so if he was correct, I could be called back and treatment quickly changed.
For me, the weeks and weeks it’s taking for my lungs to heal is frustrating, for sure. Odd thing is I have a friend who developed CoVid pneumonia in February who spent days in ICU. This friend is home now and also on home oxygen with the tether tubing. My friend said doctor said it will take months to fully heal and come off the oxygen. Not sure how much my pneumonitis healing differs from my friend’s CoVid pneumonia??? Maybe the only real difference is that my cancer treatment was changed so the Afinitor couldn’t continue causing me issues.
You mentioned a daily diary. I keep one to as I think it helps me “show” the doctors what I am going thru. As an example, I can’t reach the front door while tethered to home oxygen concentrator so I take off the tether to get the mail. Today there were 2 small packages on the stoop plus mail. When I returned to my recliner, my pulse ox was 74. I turned up my home oxygen and SUCKED in air until SpO2 returned to upper 90s. Don’t think I can give up the oxygen just yet. And I have been told I could be prescribed a low dose of maintenance prednisone for a time. So I have another treatment line to try, if needed
Thanks for replying. How are you doing as you heal from pneumonitis?
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I am so glad this thread was started. DogersGirl, how scary? I am so sorry you have been through so much. Moth and Tina, thanks so much for sharing your stories. Not being able to breath is frightful. DogersGirl, did they ever do an antibody test on you to see if you had Covid? There is such a short window when you are positive for Covid. Of course, whether the lung issues are from Afinitor or covid, it's serious and scary.
I was diagnosed with Covid on December 27th despite isolating. I am on Afinitor as part of a trial. I recovered from Covid but then 1 month later, my CT scans showed Covid lung. I got to compare my new scan with the scan prior to covid. I also did lots of research on what damaged lungs from Covid looked like. Several radiologists looked at my CT and said it looked like Covid. I believe they were correct from my research. They did consider pneumonitis from Afinitor but my scans looked more like Covid lung. Since then, I have been having 24 hour bouts of a high fever with my oxygen dropping from 100% to 80%. After the 24 hours, everything returns to normal except my congestion gets worse each time and I get more fatigued. I have been ignored by my oncologist, GP, and others I have contacted. They all tell me that they don't know how to treat Covid. I've been so angry. I have an issue with my lungs - they can treat that. So, 2 weeks ago, I decided to stop Afinitor on my own. Sadly, I am on a trial, so I am sure I will be kicked off the trial once they find out. I decided I would never heal if I continued treatment. I am feeling better, and I haven't had a bad episode in 10 days. I am still very congested though, and it's scary being off of treatment. I have a CT scan scheduled this upcoming Friday. I wrote my oncologist a very demanding message yesterday telling her that she needs to take my lung situation seriously and stop ignoring my messages. She said she will look over my scans on Friday. ~Kar
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Moth, sorry I missed your earlier post. Also sorry you had to experience pneumonitis, too. That SOB sucks.
I was taken off Afinitor right after Dec’s Scan results. Then off treatment until mid January once released from hospital. Not thrilled to be off treatment for nearly a month but do understand that breathing was most important issue to deal with. I am now on Verzenio and fulvestrant.
Do you have any issues with breathing while sleeping?
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Kar- so sorry you also have to experience pneumonitis issues.
As far as I know, they did not test me for CoVid antibodies - just 3 different CoVid tests. And lots of blood works tests to rule out other lung issues. Plus a daily chest x-ray while in the hospital.
I saw my pulmonologist in March. He compared my chest x-rays that day to those in hospital and showed them to me. The current X-ray looked much clearer than January's.
I am still checking SpO2 regularly and bought a 2nd pulse ox to take with me when I make medical trips. I literally live inside my house except for doctor things.
Have you seen a pulmonologist? If not, that might be a good next step?
Also, if you aren't doing a diary listening your SpO2 readings along with the activities experienced, could be helpful to start. Seems to help doctors see what your experience look like.
Did you test positive for CoVid? Or just have CT scan that resembles CoVid? Asking because I was experiencing on and off again symptoms like you described for 2 months leading up to my Dec scans. I would have lower SpO2 one day but be ok for a couple of days. By Christmas, the breathing issues were pretty much all the time.
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DodgersGirl ~ good ideas, thanks. I need to get referral to see a pulmonologist, and I haven't been able to get a referral from anyone yet. A diary is a good idea, thanks. I am so glad your current x-ray looks better. You are healing! I hope you continue improving and can breathe well on your own very soon. ~Kar
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DodgersGirl, no issues sleeping for me. I've really had very minimal symptoms & my SpO2 was steadily >95 but when pollen counts got really high I was struggling outside - the last week has been miserable but I think it's been more pollen than the SOB, though underneath, I think it's also still there.
Immunotherapy & steroids do the opposite things so they are contraindicated together. My MO (who's actually on sabbatical starting now for 3 months so I'll be talking to her replacement tomorrow) was ok with me restarting immunotherapy while I was on 5mg/day & I've seen some literature saying people on <10 mg were probably ok but that it reduced the effectiveness of the immunotherapy. Otoh, not taking immunotherapy also reduces effectiveness LOL. on the other other hand, nobody knows how immunotherapy works & many people continue to experience therapeutic effect even after they stop the treatment - so nobody knows how long I need to stay on it. Do we need to keep teaching my immune system how to fight the cancer or has it figured it out for now?
I wish my MO was here but oh well. It is what it is & I'll talk with the new guy tomorrow and hopefully we'll come up with a plan that I like :P
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Moth- hope you get a plan you agree with, too!
I have scans next week and will see pulmonologist in early May. Doubting I will be taken off oxygen at that point so not sure what he will say next??? I also am scheduled for a full breathing test in May, too. Hope oxygen is nearby when walking around as it feels so scary when the SOB hits.
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So - I've been referred to respirology to get an opinion as the MO isn't keen to start me on steroids but also doesn't want to just ignore this. Hoping they have some magic tricks up their sleeve & I hope those tricks don't involve steroids so I can get back on immunotherapy. I'll be glad to get some objective lung function tests because my obsessing about shortness of breath and trying to evaluate it is just driving me crazy. When I focus on something like this after a while I just can't tell anymore. Same with eye exams. "I don't know which is better anymore!"
My SpO2 fluctuates a lot - but it's pretty reliable on the healthy people in the house so I think my readings are all over.
DG, I wonder about what the healing pattern for lung is, in terms of time. I hope you improve and can gradually wean off the O2.
This cancer stuff is just shit. I'm extra frustrated with it today.
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Moth, are you logging your SpO2 readings showing the number, heart rate, and activity? I think you said your red blood counts were ok, right?
I don’t have a timeframe other than “months”.
I was doing better in the beginning of March. Was able to sit calmly, watching tv and keep my oxygen levels up. Only needing oxygen help when active. I felt like things were really improving. Light at the end of a tunnel??? I then received my 2nd CoVid shot. The very next day I needed oxygen 24/7 even just to sit and watch tv. A week later, I can say I think I am getting better again at rest. But if I walk 20 ft. I am sucking for air, feeling panicky as I don’t think I am getting air. SpO2 drops down into low 70s. Even today, without wearing oxygen to walk around my SpO2 drops very quickly. Sucks.
Moth, wondering if having oxygen at home for “as needed” would help with recovery without steroids? I can tell you I really do appreciate the ability to have oxygen to take a hit from instead of feeling like passing out. Wondering if you could have a small, portable until for the SOB times?
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yup, I have the full SpO2 monitor thingy. I haven't been logging - I just check what's happening whenever I think of it. If I get a weird reading I check another finger and keep trying until I get a better reading lol. I'm usually 96-98 but sometimes hover at 95. I can exercise indoors. I still do an hour of zumba 3/week. On exertion outdoors I sometimes drop to <90 but it bounces back up within less than a min. It's just an awful feeling esp since it's being triggered by pollen so I'm all snotty and coughing too. It's a mess. I might change my anti-histamine and see if that helps a bit as well. And hopefully the respirologist can give some input. Still haven't heard about the appointment even though the MO said he sent it marked stat.
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Moth- I got a chuckle from your post. When I first started checking my SpO2 numbers I was also taking readings from different fingers to see which finger gave “best” numbers. I learned, for me, that my right hand, middle finger gives highest numbers. Not sure if that means anything or if it’s simply due to that finger having shortest nail???
Moving around today without wearing oxygen tube so that I could get a UPS package on front stoop, left my SpO2 at 73. Took about 5 mins of sitting and wearing oxygen to return that number to 96
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Learned I have a pulmonary embolism. Starting Eliquis.
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DodgersGirl,
Wow, a pulmonary embolism?! That is some news. Glad you're getting help for it. How was it discovered?
Tina
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DG, wow. The stupid lung hits just keep coming. I hope the eliquis helps quickly! How did they find it?
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I had CT and Bone scans yesterday. Part of the every 3 months check up. CT scans before lunch and bone scan a couple of hours later.
I checked my phone for messages as soon as I got home. Had a message to call oncologist’s office. Time stamp from VM was before bone scan. I wondered what they found on CT scan so returned that VM right away. The CT Scan last fall was how I found out I had a fracture in my left scapula so I wondered what new bone fracture they had found this time. Thinking I was going to be told to head to ER before a full break. Boy was I surprised when I was told the radiologist found a PE. The oncology pharmacy filled a starter wallet for Eliquis which hubby picked up.
I don’t know “what’s next”??? Not sure how long I will be on Eliquis??? Moth— any inside baseball info/tips on Eliquis?
I assume there will be another CT scan to check on status at some point. I can oncologist appointment already scheduled for next week for monthly shots and bloodwork and have a pulmonologist appointment in a couple of weeks.
Kind of scary as I know PE’s aren’t to be taken lightly
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DG, wow how stressful
Ok I've conferred with my resident expert. The ones found on CT are often incidental but cancer pts are at higher risk for clots so we're guessing their thinking is "you've made 1. Who knows how many more you'll make?" & hence the thinner rx. We saw a recommendation for minimum 3 months treatment for incidental pe in cancer pt but they also said little data on this exists.
As for the thinner:
Watch for any bleeding, blood in stool or when coughing etc etc. Report right away, don't wait.
Do not cut yourself. Now's not the time to be experimenting with knife techniques lol
Do not fall! If you fall and you think you might have hit your head, or can't see a reason for why you fell, go to er and consider head MRI.
Don't stop moving! Keep walking (in your hallway with the oxygen is fine) do ankle circles, leg raises etc. They can form in other places and just move to the heart so keeping the blood moving.
Chest pain or alteration in perception, vision change, speaking problem etc call 911 immediately
Normally it's also watch for shortness of breath but I guess for you it's any decline from your current baseline, again 911
this is a new thinner & there used to not be an antidote for it but since 2018 there is one.
There's a good chance it's small and it's really nothing to worry about. Apparently they get found a lot on CT in pts with no symptoms. Maybe we all have one floating around...
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DG, how scary! I am so glad they found it and you are being treated right away. I had my CT scan last Thursday. The Covid 'fog' on the top half of my lungs is clearing up. On the lower lungs, it looks like a have a new infection (new since my previous scan 2 months ago). Since the covid part is finally looking better, and because I finally started getting a big nasty about how I have been ignored ever since I got Covid back in December, I am finally getting some attention. I have an appointment with a lung specialist next week. The good news is that I am breathing much better and have had fewer emergencies. Sadly, I had to stop treatment (Everolimus) on my own 3 weeks ago, but I think that helped my lungs improve. The ER last Friday gave me antibiotics for the new infection and an inhaler (which helps!). Tomorrow, I will be starting Verzenio. While no doubt the 'fog' was from Covid, I think the newer infection is from the Everolimus (pneumonitis as many of you have mentioned). ~Kar
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I got an appointment with a lung specialist this Friday afternoon but guys... It's a phone appt!
I mean wth. We're having a 3rd wave covid outbreak but i need my lung capacity measured.. I really want to get away from my subjective assessments of shortness of breath and get some objective benchmarks.
Oh well. Maybe it's just for the 1st specialist appt.
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Moth, thank you so much for all the info you included....wow. So appreciative!!
Not sure what a phone appointment will do with a lung specialist but sure hope something good comes out of it. Keep us posted.
KarPC— glad the CoVid fog part is improving. Hope the antibiotics helps quickly. I was on 2 different antibiotics in the hospital. I think they helped clear up some of my pneumonitis.
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I had a chest xray today & then did some lung function tests - which I think I was failing because she asked me to do them over & over, to take a break & try again etc. I struggled with taking the deep breath and then blowing hard into the tube... she said she thought the respirologist might request more lung testing. Apparently this was the 'short' test and there's a longer one. Sigh. I have a telehealth appt tomorrow with the respirologist and they will tell me the results and I'll see what they think. I'm worried they'll want me back on oral steroids
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Moth, sorry to read about today’s tests. Ugh
Yes, there is a longer breathing test. I am scheduled to take it in early May. Supposed to involve more walking around and testing. I don’t expect to do very well but will try.
I can definitely says that I took breathing for granted in the past and definitely do not take breathing for granted now.
Fingers crossed that steroids are not part of your plan.
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Thanks DodgersGirl! turns out I was an anxious panicky baby for nothing. Respirologist is not too concerned and doesn't want to restart steroids. He'll recheck again after my CT on May 1 and I will be having the long lung function test - but it sounds like they more just want to have a good baseline measurement. He said he would let my symptoms drive my treatments so as long as my SOB isn't problematic, I can carry on
jeez, this cancer stuff. It's always something coming at us. My allergies are finally easing up - whatever the huge trigger was in March is obviously finishing up - so I'm doing much better.
I hope your breathing continues to improve DG!
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Moth, yay to no steroids! Good to hear you are doing better.
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Moth- that is great news!! So happy for you.
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Update— had appointment with pulmonologist this week. Given aa full breath test first. This test concluded by doing short “laps” in the hallways of the doctor’s offices area. First lap was without oxygen.
At the end of first lap, my SpO2 levels dropped to 81. Tech said that was a quick drop. She put me on oxygen and we sat while SpO2 levels returned to mid90s. Then walked 2 more laps. Did better on oxygen but B/P took a hit. More sitting and resting
Next, had office visit with pulmonologist
He agreed I will most likely be on Eliquis for life. Said it was likely I could produce more blood clots since I produced one. Said being a cancer patient increased blood clot risk as did having a port.
Also will remain on oxygen for now. Might not come off. Sigh. Talk about being tied down like a dog on a leash
I go back in 3 months to see if there is improvement
My infiltrates in lungs are a lot better but functionality of lungs aren’t producing enough oxygen when doing anything above sitting in a chair. And even when watching tv, if not on oxygen, my SpO2 slowly drops into the 80s.
Had an overnight pulse ox test this week, too Not sure what’s next at this point
Cancer is stable right now so that was the Good News!
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DG - well it's a good thing that the cancer is stable but I'm still mad for you - what a sucker punch to have the lung & PE issue from treatment. What a bastard cancer is. I hope you continue to improve and can ditch the O2 eventually.
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DodgersGirl - Thanks for updating us. Wonderful to hear that your cancer is stable. Darn, I am so sorry to hear about what you are going through. I know how scary that sudden drop in oxygen can be. After 4 months, my lung issues finally got much better. I hope the same happens to you in time. Please keep us updated. ~Kar
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I have mets in and around my lungs. I have been home on oxygen for 3 months - yep feel very tied to the house. Was initially told by my oncologist office that I could not get oxygen as there was a shortage due to covid. Well OK now. 2 days later i was admitted tot he hospital with trouble breathing Sent home with oxygen.
When I am sitting my spo2 levels remain above >90. If I am just sitting for any length of time I often take the oxygen of, just for a break. If my #s stay above 90, I figure I am ok. I am up moving around they go < 90 but seemm to rebound pretty quickly Levels from the right hand are typically lower and do not rebound as quickly.
I am on enhertu and pneumonitis can be an issue. Coughing can be an issue, but has decreased. Seeing a new onc tomorrow. Questions ; chest xray to help in determiining pneumonitis, cancer issues or a virus of some sort.
Frustrated with not being able be as active around my house, not being able to easily get out (damm those tanks or miserable) overall just not living my life the way I would prefer.
That we may all be breathing healthy soon
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