Pneumonitis
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Nel— hope you get answers from new MO.
I am on a home oxygen concentrator with a 25’ leash. I can’t get to the bedroom floors from the home concentrator.
I was released from the hospital with 3 oxygen tubes but find them difficult to take on a trip so I have a portable oxygen concentrator, too. The hose on it is short (7 foot) but the machine itself is very portable. It does not have the humidifier attachment though like the home unit has. I find my nasal lining dries out quickly.
I miss being able to go upstairs when I want.
Like you, my pulse Ox recovers quicker now than in January
Good luck to
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Nel, I hope your issue is propely diagnosed and treated soon! if it's pneumonitis, steroids might help (assuming they're not contraindicated with your treatment? That was my issue - if I needed steroids I had to come off immunotherapy so there was a lot of weighing pros & cons).
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Nel, I am not sure about a chest X-ray but a CT scan can sometimes pick up pneumonitis. I am not sure if it always does. My CT picked up my covid infection. Then, the next CT scan picked up a new infection that was probably drug-related pneumonitis. I hope you new onc is helpful tomorrow. ~Kar
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latest scans show PE from April has resolved and the infiltrates are getting BETTER!!
Maybe I won’t have to be on supplemental oxygen forever??
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Good news, Dodgers Girl! Let's hope that you can ditch the supplemental oxygen soon.
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DG, I'm happy for you! I hope the lung healing progress continues!
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I actually took off the oxygen tether for almost 3 hours and kept SpOs2 92 and higher. Noticed I was feeling rundown so put the oxygen on again and now feel better. It’s a start
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Yay Dodgers Girl! So happy to hear about your improvement and hope it continues.
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thanks everyone for the positive notes
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Tina,(and anyone else who may have some information) I am currently dealing with Ibrance Induced Pneumonitis. It has been getting worse for 3 months while they try to figure out what the "problem" is. They are only just coming around to admitting it is what I said it was 3 months ago. I fear that the length of time it is taking to figure it out is allowing more damage to be done at the expense of my long term health. I am current ly taking 100 mg of Prednisone...at my insistence that they increase from 40 mg. I have begged to be hospitalized because, in spite of stopping my Ibrance 2 months ago, their prednisone and Asthma inhalers, my condition is getting worse. I have been to the emergency room 4x only to be sent home with normal o2 readings. I cannot lay down at all, sleeping vertical like on an airplane every night.I have gone from being able to beat my husband in racquetball in May, to having to quit my driving job because I could no longer handle it and being basically invalid in 3 months. I live near (1 1/2 hours) St. George, Utah where I receive my medical care, but am in Arizona and 5 hours from Phoenix, 3 hours from Las Vegas. I am wondering if you have any more information I may be able to go on regarding treatments you received or perhaps doctors who really understand this condition. Thank you.
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Flyingkites - I am so sorry you are experiencing this. I live in Park City Utah and I'm treated in SCL at Huntsman. Maybe you can try an oncologist there at least until you figure this out (they take any insurance if you live in Utah). I had pneumonitis from everolimus. I took a month off from it and it cleared up. My immune system got stronger during the break and was able to fight the infection. I stayed on my SERD (like faslodex) tho. So maybe an oncologist would suggest you take a short break from Ibrance but stay on faslodex or letrozole. This would allow your immune system to get stronger and your white blood cells to increase so you could fight the infection. You should not need to feel so scared and horrible and go through what you are going through. ~Kar
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flyingkites, do you have a home SpO2 probe? If not, I would recommend you grab one from amazon so you can check your own levels.
Have you had imaging that correlates to pneumonitis as the issue?
I'm currently dealing with a small flare up of radiation induced pneumonitis - it's either triggered by a seasonal allergy or it's because it's around the 6month mark post the initial pneumonitis and that is around the time that some of the collagen becomes more permanently laid down and results in a more rigid fibrosis. Mine is very localized the lobe that was treated with radiation so it didn't set off panic alarms here. 50mg of pred oral for a week and then tapering by 10mg every 5 days. I'm about 1/2 way through the taper now.
I was told there is a window of opportunity for treating initial pneumonitis, and steroids do not help at a certain point once fibrosis is setting in. I had a consult with pulmonology/respirology and they did say that exercise (to whatever level I could tolerate) was considered a good intervention as it kept the tissue more pliable and would maximize the lung capacity and keep the 'stretch' in the alveoli. I never stopped doing daily walks & once they gave me the go ahead, I resumed my Zumba aerobic. When my pneumonitis was bad, the first 10 mins of aerobic exercise felt awful, like I'd have to quit any moment, but then it suddenly would get better & I could finish the session. I was doing 60min aerobics 3x a week during the really bad bout of pneumonitis I had in the spring. But I also often had to stop during a walk because i'd get so easily winded.
If your exercise intolerance is really disappearing as you describe I'd want more diagnostics, scans, blood work to rule out what else is happening. Keep us posted!
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Hi Flyingkites,
I agree with Moth that this will be a long long recovery for you. I would encourage you as did Moth to get a home O2 probe. That will be reassurance to know your O2 sats are within normal limits. You should really really try not to go into the ED unless you absolutely must. With your BC diagnosis & the condition of your lungs, you are so vulnerable to lots of bugs.
Your prednisone & albuterol are your best treatments. However, at 100mg/day of prednisone, you will need to taper very very slowly over a long period of time. Do you by chance have allergies? Allergies or irritants (like smoke) will make pneumonitis worse. I so agree with Moth about exercise. The damage caused by the pneumonitis makes the alveoli stiff. It is the same concept as bone restoration with impact exercises - it helps to preserve the bone. A gentle but resistance aerobic exercise will help to expand and hopefully repair those alveoli.
I wish you all the best,
Jane
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I stopped Ibrance 2 months ago on my own accord, because the cough was getting bad. i have never had allergies, asthma or breathing problems. I also did get an O2 sensor. I don't keep records, as I think they already have me pegged as a hypochondriac enough already to not run around with O2 records... insert violent eye roll here. The Ox numbers are usually in the low 90s, and go into the 80s on low exertion. When I go to the emergency room or Dr...I go all "Michigan Frog" on them. (Looney Tunes
) Things calm down, the coughing calms Ox numbers normal, so they send me home. It is at night that things get really crazy. I can't lie down in any position. In fact I need to sit forward a lot of the time just to keep the spasms down. Last Sunday my lungs would not stop spasming...looks almost like dry heaving, but suppressing a cough. I went to ER and they gave me a Duoneb and nebulizer treatment that stopped the spasms and made me "normal" for a few hours...and then sent me home. ER is for stabilization...not hospitalization unless they can't stabilize. So once stable, they send me home. What they are missing is the crackling and wheezing and coughing through the night, because I am better when I am up. Even slow pacing is better than any kind of sitting. But eventually that gets exhausting. I can't get them to admit me to a hospital because they keep telling me that I have to go through the ER, and ER keeps sending me home. (BTW...4th Neg COVID test results today..it's NOT COVID related) I have had a bronchoscopy, echocardiogram, breathing test, overnight ox test and many blood tests.. All things basically point to Ibrance pneumonitis. They also have me scheduled to see a cardiologist and have an Endoscopy (because they keep calling it GERD..and I want to park a tractor on their chest every time they say it.) on Tuesday next week. I am exhausted from getting no restful sleep for months, I am exhausted from trying to breathe normally, I am exhausted from trying to convince DRs that this is serious and life threatening and that I should be on higher doses of Prednisone and I should be in the hospital. Most recent prescription from Pulmonologist was a new Nebulizer med and Breo. I used them today and it didn't help at all after a couple of hours. I called the Medical Assistant and she told me they take up to 3 weeks to work. I felt like going postal!!! Told her if they think meds that will take up to 3 weeks to work is what I am needing now, they clearly have NO CLUE what they are dealing with and that they are making a life threatening wrong decision regarding my care. She told me to go to ER!!! So, I made a decision today, based on the literature I have read. It is my understanding that I should be on about 2x as much prednisone as they are prescribing. I read 2-4mg/kg body weight and they have on only 1mg/kg. So after discussing with my hubby..we decided to double it on our own. I know that may be risky, but I don't know what else to do. PS. I love the advice to exercise. I have been considering doing Yoga and light stretching. I think I sometimes find the same about pushing through the first few minutes and things getting better.
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oh gosh I'm worried about you.
according to Lexicomp, for prednisone "High dose: 1 to 1.5 mg/kg/day (usually not to exceed 80 to 100 mg/day)." https://www.uptodate.com/contents/prednisone-drug-...
I really don't think it's a good idea to increase the pred that high. Also careful with online recommendations because steroid dosages between formulations for pred, methylpred, dexamethasone etc are not equivalent...
If you're satting in the low 90s at rest that is still ok. Nursing doesn't intervene with oxygen at sats above 92. For COPD pts, 88 and over is considered ok.
I think the symptoms you're describing are similar to Grade 2 pneumonitis which would be treat with oral steroids. Grade 3 requires hospitalization with IV steroids but usually in between that jump to hospitalization & IV steroids, they instead add supplementary O2 by nasal prong (as a board member on this thread has had to do). My understanding is they're looking for consistent <88 at rest before adding a home O2 therapy.
I honestly think the thing you need is a CT or MRI of the chest to rule out progression of disease and confirm this is pneumonitis. That's the thing I'd push for - imaging.
What is your oncologist saying?
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Oh gosh, Flying. You have so many misconceptions. Please, please do NOT increase you're Prednisone! You have already suppressed your hypothalamic-pituitarity-adreanal axis. The risk of this is becoming at risk of a fatal adrenal insufficiency. After a certain dosing point - about 80mg/day, you will not receive any further benefit. You have suppressed whatever ability for your body to meet a crisis.
Why are you against keeping O2 sat logs? Your physicians really want to correlate what is happening & at what time. By trying to add in your exercise really helps. You are deliberately trying to keep your providers in the dark. Why do you do that?
I KNOW drugs & I know a few doses of Breo will not make any difference in what you feel. It is a chronic medication and indeed will take weeks to work. You may not even notice a difference until, wait for it, you do. It is a subtle improvement, not overwhelming. Why are you so impatient? Do you not understand how they work? If so, you need to educate yourself.
You also DO NOT need to be in a hospital! They are overrun by very very sick people & someone who is predisposed to a pulmonary infection does NOT want to be there.
Flying - do what your physicians instruct you to do. I can pretty much promise that your's & your husband's education do not surpass that of a pulmonary physician who has spent more than a decade treating patients like yourself with severe pulmonary disease.
Stay smart & stay well,
Jane
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Why am I so impatient???? I have struggled with every breath for weeks!! I need to know that we are not treating asthma, we are treating an acute case of pneumonitis, one that could kill me, because their treatments ARE NOT WORKING and I am getting worse. I have been on Grade 2 treatment for over a month with only worsening symptoms. I have had 3 CT scans showing ground glass opacities and tree-in-bud. I am keeping no secrets from my Physicians as I have assured them that they are not getting at the right conclusion. If they had hospitalized me 2 months ago when I first requested it, they would have me stable by now, but instead things are getting worse. I only have case studies and this: https://themelanomanurse.org/pneumonitis-toxicity-... as reference for treatments. According to it, when grade 2 treatments are not working you move into grade 3 with hospitalization, IV steroids, etc. They refuse. They have never seen how severe things get when I try to sleep. They only just are acknowledging that it might be pneumonitis caused by Ibrance something I have been insisting on for months. Perhaps the total lack of sleep is causing me to lose my mind, but I really feel at a loss for what to do. One pulmonologist, BTW told me that it couldn't be pneumonitis caused by Ibrance because it would not be getting worse after I stopped the Ibrance. That was my first clue he has no idea what he is talking about and I gave him an education.
BTW..back in 2015 when I was initially diagnosed and did Chemotherapy, I had a Dr who wouldn't listen to me when I told him I had a cough and something was wrong. I kept telling him I was sick and he eventually got mad at me and told me that I was done with chemotherapy and that he would not give me another dose because I couldn't handle it mentally. I was distraught, because it was like my Dr abandoned at a very vulnerable time. For days I felt terribly sick and wondered what to do. Finally I told my husband I needed to go to a hospital that day...either mental or regular. I was able to find a different ONC who put me in the hospital when I told her I needed to go to a hospital. 10 days later they had me diagnosed with PCP (a very serious condition), stabilized and home again with prophylactic Bactrim to prevent recurrence.My Dr told me it was good I insisted on the hospital, because I would have gotten really bad that weekend. Weeks later I finished my chemo. I have trust issues for a good reason. These doctors are not correct and they are allowing me to deteriorate when they really don't know what to do. My ONC told me I am his first Ibrance Pneumonitis patient. So, I guess I am not willing to die as their guinea pig.
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You couldn't handle it MENTALLY??? What an unbelievable thing to say. I'm so sorry you're going through all of this. Not being able to breathe (or "just" being SOB) is frightening.
I sincerely hope they (whoever "they" are) find out what the hell is wrong with your lungs and get it treated!!!
Carol
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flying - I am so sorry no doctors have been able to help you. It’s wrong and I hope you can find the doctor who is willing to figure this out for you. I understand the frustration- I had ground glass nodules and the tree thing for months after having COVID. I would have these episodes of very low oxygen saturation and I once passed out and this went on for months. I wasn’t getting any help from my doctors at first and of course by the time I got to ER after having a bad episode I would be much better and they would send me home. I really understand the frustration. I agree taking the steroid at a higher dose is not a good idea. I think you need to find a doctor who will follow thru with you on this. My heart breaks for you that you are going thru this but I believe you can find someone who will help you.
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FlyingKites,
I have no answers for you. When I stopped taking Ibrance, my pneumonitis diminished and my overall health improved steadily. I had no further treatment for it, but am now well aware that "rare" drug reactions can happen to any of us, and that oncologists are not necessarily looking for them. I will be interested to see what my new scans indicate next month.
I wish you the best.
Tina
P.S. Please don't self-medicate.
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FlyingKites— it took some time for my doctors to consider my low oxygen saturation was pneumonitis from Afinitor. I tracked my oxygen saturation and watched I continue to drop. I started Afinitor in October and by November I could no longer go to bed to sleep as oxygen saturation really dropped. I was afraid I would fall asleep and not wake up.
In early January I was put on Prednisone for a week and felt so much better. Jumping for joy as I felt I could be active again! A few days later after completing steroid treatment, my low pulse ox returned. It got as low as in the low 70s.
Oncologist sent me to ER via an ambulance. ER put me on oxygen and I felt so much better right away.
I got CoVid tested again in ER (4th time in 2 weeks). Negative. Was told my lungs looked like CoVid but pulmonary doctor listed to my tale and said he would treat me as if it was pneumonitis, saying we would know in a few days.
I was put on IV steroids (high dose) which sent my blood sugar thru the roof. Insulin shots were started (new to me. Blood sugar never been so out of control). And he placed me on 2 IV antibiotics. I remained on oxygen, too. Each day, my chest X-rays showed improvement. He said it did look like it was pneumonitis.
Pulmonologist got me to a point I could continue to finish both antibiotics by pill and steroids by pill so IV was removed. Released from hospital in January with oxygen.
Here it is 9 months later. I am still on oxygen and still can’t go to bed to sleep. Oxygen saturation is in 90s. Upon exertion or breathing on my own drops oxygen saturation to low 80s.
Chest X-rays show much improvement. They tell me I just need to be patient as every day things improve.
Sucks to be attached to a tube to home oxygen concentrator and sucks I have to sleep in a recliner (at least it is a zero gravity so I do feel like I am all stretched out to sleep). Pneumonitis is no joke.
I agree with everyone here. You need to monitor your oxygen saturation and note activity at the tracking time
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DogersGirl...I can totally relate to that fear of thinking I would not wake up. Especially when taking the sedating cough meds (codeine) or even ativan. I feel like my lungs will fill up and I won't wake to clear. Funny thing, my O2 levels do drop at night, but my heart does a lot of compensating. So today we walked slowly around the block and my O2 showed low 90s, but heart rate 130-140. My husband's O2 was 93, heart rate 69. I think this is one thing they are missing. I usually have a low heart rate in the 50-60s at rest...so when I am in ER and my HR is 90 and O2 is 93 it appears I am fine, but actually my heart is working extra heart to compensate. It is shocking they took 2 months to get you on steroids. I can't help wondering how much faster the recovery if they would have put you on steroids in November before extra damage was done. I keep thinking the same of my situation. If they had taken me seriously 3 months ago, I wouldn't be so bad now. As an aside...today has been a relatively good day. i really believe that the decision to up my prednisone to 200 mg was a good one. I am spacing it out throughout the day and that makes a difference between just taking one big dose. I even got about 5 miraculous, 90 degree angle, hours of sleep last night. I am surprised at the difference...like maybe 50% better than yesterday...which was a bad day. I am sure my Drs will read me a riot act for doing it, but I think it was a good thing to do even if it means months of slow taper. Like they say...If you can't breathe, nothing else matters. Thank you for sharing your story and giving a bit of validation. It helps. I hope you are improving every day and one day soon you will find your health back to "normal" .
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flyingkites— when I exert without oxygen assist, my heart rate jumps up to 130. That is why I have to wear the oxygen at home. Just walking to the kitchen without oxygen on drives my heart rate up. Pulmonologist said my heart is working overtime to keep up my oxygen saturation. Wearing the oxygen keeps my heart rate in normal range while exer
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Thank you KarPC, I have been considering going up to Huntsman. I have heard good things. I have family in Utah as well as Phoenix, so even with a 5 hour drive either way, I could do both. Do you have a good Oncologist that you trust up there?
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Flyingkites - My oncologist is retiring soon and not taking new patients but I've heard Dr. Ward is great. I've worked with Dr. Vaklavas when I was in a clinical trail and he is great.
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Last night I fell asleep at 8-ish and actually slept on my left side on the couch (not vertical)I slept soundly for 5 hours!Amazing improvement.Woke up at abut 1:00, coughing, crackling and wheezing…not as bad as last week. I believe the 200 mg of prednisone is working .I saw an amazing difference on Saturday and some better on Sunday. I found on Sunday that when the spasming gets hard, it is probably time to take another dose of prednisone. Afterward the spasming gets better. I also took .5 mg Ativan (to reduce my tendency to keep thinking about my anger at the doctors) and some 300 mg Gabapentin before sleeping. After being up a couple of hours, I was able to again sleep/rest for a couple of hours. It is the best sleep I have had in a long time.
Called My Onc to discuss getting another CT Scan to see progress of lungs.His MA called back and told me Dr. wants me to work my treatment through the pulmonologist.
So I called the pulmonologist's MA.Told her that I needed a CT scan weekly until my lungs are back to normal .I also informed her that I had increased my prednisone to 200 mg and saw improvement.She noted that I sounded better than when we talked on Friday. She later called me back and said Dr thinks I need Monthly CT scans and that while 200 mg dose of prednisone would be the correct does for Grade 2 pneumonitis, He. does not believe that I have that and that he no longer wants to treat me as a patient.Told me to find a 2nd opinion.
Then I called my Onc's office to inform them that I no longer have a pulmonologist. Dr's dropping like flies. They refuse to even call the problem penumonitis. They are treating sudden, adult onset, asthma...not pneumonitis. They are doing so at the risk of my life. This is scary stuff that the Drs seem to know little about.
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flying kites - I am so sorry you are going thru this. It sounds very scary. I hope you find a doctor who can help you soon.
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I think I finally got a doctor who may be able to help me. I went to a new Pulmonologist and he called my ONC and told him to get on board with this being Pneumonitis caused by Ibrance. He told me he could tell I was scared. He admitted that they didn't know how to treat it, but told me he would be consulting with other specialists and he would research and even call Ibrance and find out how to treat it. He even hugged me and told me I would not die on his watch. I cried. Finally!!! Someone with some compassion and validation that it is what I have been begging them to treat all along. I believe this delay has caused great harm which could have been avoided if they had put me in a hospital for quick and proper assessment and treatment. I feel so angry and scared. I want all those doctors to suffer...badly like I have and have someone ignore them and treat them like they are freaking out about a cold sore when they feel like they might be dying. (but those thoughts are not productive and only cause stress, so I try to keep them back, just being real.) Even now, they never check to see how the new meds they throw at me are working, have side effects. They don't check to see if I am doing better. I am working on getting a new medical team in Scottsdale and even at the Mayo Clinic. But everything takes so much time and I think in this case time is of the essence. So frustrating.
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Flying, I'm SO glad you found a doctor who listened to you! It's unbelievable that it took so long.
Did you ever watch The Golden Girls? There was an episode where Dorothy was suffering with fatigue and malaise and everyone wrote her off until she found a doctor who diagnosed her with Chronic Fatigue Syndrome. She was so relieved to have a "name" for why she was felling so bad. She went to a restaurant with her pals and saw the same doctor who basically told her that she was crazy.
She went up to him to sort of tell him off. When he starts to brush her off again, the guy's WIFE tells him to shut up and listen! It was priceless and is of my favorite episodes.
I'd like to ask a question here, too: What are your 02 sats? I'm just curious if anyone here tracks them, and when it becomes a problem for you. Mine usually hovers around 98%, but yesterday and the day before it was down to 92%. I'm not particularly SOB, but occasionally I feel like it's hard to get a deep breath in. Just curious...
Carol
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That's the problem. All they go by is my O2 stats. When I am in ER or at DR they are at 90+. I think they hover in the low 90s in general. The problem is the damage to my lungs. Last x-ray showed worsening infiltrates and they don't even address. I want them to follow this protocol...which seems thorough. https://themelanomanurse.org/pneumonitis-toxicity-grading-and-management/#1508959583534-0-9 . I just talked to a pharmacist about the high dose of prednisone I am taking along with other meds and he is shocked that my Drs are allowing this treatment, which is not taking care of the problem, to continue without hospitalization. This is more than just about O2. The longer they allow this damage to continue unabated, the more damage is done. Yet I feel helpless to get better help. Even the new doctor, with his validation, won't see me again for another week. I have an appt with my former ONC in Scottsdale on Monday. She was very good, and I am hopeful she will see the urgency in this. Maybe I will finally get the treatment I need, even if I have to drive 6 hours to get it. Fingers crossed.
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