› Forums › General Melanoma Community › Pneumonitis Treatment
- This topic has 21 replies, 3 voices, and was last updated 9 years, 2 months ago by
Maria C.
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- March 4, 2016 at 4:40 pm
Hi all –
I'm wondering if anyone else on this board has dealt with pneumonitis as a side effect from the ipi/nivo combo, and if so, how long did it last and what did your treatment look like?
I'm 6 weeks in with this side effect after my 4th and final dose of the ipi/nivo. At first I had a CT scan of the lungs, and there was a little activity but nothing too alarming. With the hope of not going on steroids that would prolong the first maintenance (nivo) infusion, I was given antibiotics at first to see if that cleared things up, then when it didn't I was given a short burst (1 week) of steroids which helped. A week after I got off them and was scheduled for the infusion, I had shortness of breath again followed by a wait & see period of 2-3 weeks. Still not clear so I got another CT scan earlier this week which showed lots of activity, and on Monday I will have to go for a bronchoscopy to identify whether it's inflammation or infection (possibly PCP).
Has anyone else had a similar experience? I was told by the pulmonary doctor today that treatment for this can last up to 6 months, which would delay my maintenance regiment significantly … a troubling thought …
Thanks for any insight others can offer.
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- March 4, 2016 at 10:17 pm
Hi Maria,
Not sure how much this will help, but its the first time I've seen it mentioned on the board. Yes, I too experienced severe shortness of breath soon after my 4th infusion of the ipi/nivo combo. It was pretty scary I must say, and later discovered this is a possible side-effect from the combo. My doc was quite concerned, and prescribed a strong dose of prednisone. I was going to start the prednisone the next day and ironically, my symptoms began to diminish that morning so I did not start the meds. A later CT of chest revealed a bunch of inflammation. Luckily I was able to stay on the nivo only as symptoms continued to slowly resolve themselves but it was a close call and I was almost denied further nivo treatments. I had also had radiation therapy not long ago and it was determined that the problem was more likely whats called radiation pneumonitis. I am still dealing with mild symptoms months later, with slight shortness of breath, and an intermittent hacking cough.
Gary
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- March 4, 2016 at 10:17 pm
Hi Maria,
Not sure how much this will help, but its the first time I've seen it mentioned on the board. Yes, I too experienced severe shortness of breath soon after my 4th infusion of the ipi/nivo combo. It was pretty scary I must say, and later discovered this is a possible side-effect from the combo. My doc was quite concerned, and prescribed a strong dose of prednisone. I was going to start the prednisone the next day and ironically, my symptoms began to diminish that morning so I did not start the meds. A later CT of chest revealed a bunch of inflammation. Luckily I was able to stay on the nivo only as symptoms continued to slowly resolve themselves but it was a close call and I was almost denied further nivo treatments. I had also had radiation therapy not long ago and it was determined that the problem was more likely whats called radiation pneumonitis. I am still dealing with mild symptoms months later, with slight shortness of breath, and an intermittent hacking cough.
Gary
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- March 4, 2016 at 10:45 pm
Gary, thanks so much for sharing. Is "radiation pneumonitis" related to gamma knife procedures for brain mets? What type of radiation did you receive?
I saw the pulmonary doctor on the team today and they are recommending a bronchoscopy for Monday to pinpoint exactly what all the actiivty around my lungs is all about. Could be inflammation but my oncologist is highly concerned it's an infection, particularly PCP, which is alarming. The difference in the CT scan of my lungs a month ago and the CT scan from earlier this week is significant.
Sorry to hear you are still dealing with symptoms so many months later, but at least you are back on the nivo. That's fabulous! I know that's where my oncologist wants me to go, but we can't do a thing until we find out what we're dealing with re: the lungs. If it is PCP, that will mean heavy-duty antibiotics which will have their own side effects. It's a scary spiral….
Sigh…
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- March 4, 2016 at 10:45 pm
Gary, thanks so much for sharing. Is "radiation pneumonitis" related to gamma knife procedures for brain mets? What type of radiation did you receive?
I saw the pulmonary doctor on the team today and they are recommending a bronchoscopy for Monday to pinpoint exactly what all the actiivty around my lungs is all about. Could be inflammation but my oncologist is highly concerned it's an infection, particularly PCP, which is alarming. The difference in the CT scan of my lungs a month ago and the CT scan from earlier this week is significant.
Sorry to hear you are still dealing with symptoms so many months later, but at least you are back on the nivo. That's fabulous! I know that's where my oncologist wants me to go, but we can't do a thing until we find out what we're dealing with re: the lungs. If it is PCP, that will mean heavy-duty antibiotics which will have their own side effects. It's a scary spiral….
Sigh…
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- March 4, 2016 at 11:09 pm
Hi Maria,
My radiation was directly to the torso. Several very large subcutaneous tumors that were causing lots of problems, with pain, and disfigurement. I was warned prior to treatment, that lung damage is not uncommon when treating in the direct vicinity of lungs. So this was not such a surprise with the benefit of 20/20 hindsight.
Gary
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- March 4, 2016 at 11:09 pm
Hi Maria,
My radiation was directly to the torso. Several very large subcutaneous tumors that were causing lots of problems, with pain, and disfigurement. I was warned prior to treatment, that lung damage is not uncommon when treating in the direct vicinity of lungs. So this was not such a surprise with the benefit of 20/20 hindsight.
Gary
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- March 5, 2016 at 1:10 am
My husband had pneumontis from Keytruda treatment back last July. I cant remember how many infusions he had but he had started them in Jan 2015 and had to stop temporarily in July for pneumonitis which can be a side effect from the autoimmune theray.
He was put on high dose steroid that tapered off and by 6 weeks was off them and continued back on treatment right asay without another issue with the lungs. The high dose steroid caused terrible insomnia but he said he felt like superman while taking them. We had gotten so much done around the house that 6 weeks after months of him felling like crap.
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- March 5, 2016 at 1:10 am
My husband had pneumontis from Keytruda treatment back last July. I cant remember how many infusions he had but he had started them in Jan 2015 and had to stop temporarily in July for pneumonitis which can be a side effect from the autoimmune theray.
He was put on high dose steroid that tapered off and by 6 weeks was off them and continued back on treatment right asay without another issue with the lungs. The high dose steroid caused terrible insomnia but he said he felt like superman while taking them. We had gotten so much done around the house that 6 weeks after months of him felling like crap.
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- March 5, 2016 at 1:50 am
Pooerkpb – I know that "superman" feeling, lol – the first time I was thrown on steroids (when I got uveitis after the first infusion) I suddenly had all these crazy plans I was going to do – take a good-bye-to-the-world cross-country road trip, start a blog (not just any blog, but partner with some Big Immunotherapy Group), and other grandiose to-do's. I'm 2 days back on them now and while I am breathing easier and have renewed energy, my mind isn't quite spinning like that first time 🙂
I will keep all posted about the results of the bronchoscopy – if it's an infection (treated with antibiotics) or inflammation (staying on steroids) – in case this is helpful to someone down the road.
Cheers –
-
- March 5, 2016 at 1:50 am
Pooerkpb – I know that "superman" feeling, lol – the first time I was thrown on steroids (when I got uveitis after the first infusion) I suddenly had all these crazy plans I was going to do – take a good-bye-to-the-world cross-country road trip, start a blog (not just any blog, but partner with some Big Immunotherapy Group), and other grandiose to-do's. I'm 2 days back on them now and while I am breathing easier and have renewed energy, my mind isn't quite spinning like that first time 🙂
I will keep all posted about the results of the bronchoscopy – if it's an infection (treated with antibiotics) or inflammation (staying on steroids) – in case this is helpful to someone down the road.
Cheers –
-
- March 5, 2016 at 1:50 am
Pooerkpb – I know that "superman" feeling, lol – the first time I was thrown on steroids (when I got uveitis after the first infusion) I suddenly had all these crazy plans I was going to do – take a good-bye-to-the-world cross-country road trip, start a blog (not just any blog, but partner with some Big Immunotherapy Group), and other grandiose to-do's. I'm 2 days back on them now and while I am breathing easier and have renewed energy, my mind isn't quite spinning like that first time 🙂
I will keep all posted about the results of the bronchoscopy – if it's an infection (treated with antibiotics) or inflammation (staying on steroids) – in case this is helpful to someone down the road.
Cheers –
-
- March 5, 2016 at 1:10 am
My husband had pneumontis from Keytruda treatment back last July. I cant remember how many infusions he had but he had started them in Jan 2015 and had to stop temporarily in July for pneumonitis which can be a side effect from the autoimmune theray.
He was put on high dose steroid that tapered off and by 6 weeks was off them and continued back on treatment right asay without another issue with the lungs. The high dose steroid caused terrible insomnia but he said he felt like superman while taking them. We had gotten so much done around the house that 6 weeks after months of him felling like crap.
-
- March 4, 2016 at 11:09 pm
Hi Maria,
My radiation was directly to the torso. Several very large subcutaneous tumors that were causing lots of problems, with pain, and disfigurement. I was warned prior to treatment, that lung damage is not uncommon when treating in the direct vicinity of lungs. So this was not such a surprise with the benefit of 20/20 hindsight.
Gary
-
- March 4, 2016 at 10:45 pm
Gary, thanks so much for sharing. Is "radiation pneumonitis" related to gamma knife procedures for brain mets? What type of radiation did you receive?
I saw the pulmonary doctor on the team today and they are recommending a bronchoscopy for Monday to pinpoint exactly what all the actiivty around my lungs is all about. Could be inflammation but my oncologist is highly concerned it's an infection, particularly PCP, which is alarming. The difference in the CT scan of my lungs a month ago and the CT scan from earlier this week is significant.
Sorry to hear you are still dealing with symptoms so many months later, but at least you are back on the nivo. That's fabulous! I know that's where my oncologist wants me to go, but we can't do a thing until we find out what we're dealing with re: the lungs. If it is PCP, that will mean heavy-duty antibiotics which will have their own side effects. It's a scary spiral….
Sigh…
-
- March 4, 2016 at 10:17 pm
Hi Maria,
Not sure how much this will help, but its the first time I've seen it mentioned on the board. Yes, I too experienced severe shortness of breath soon after my 4th infusion of the ipi/nivo combo. It was pretty scary I must say, and later discovered this is a possible side-effect from the combo. My doc was quite concerned, and prescribed a strong dose of prednisone. I was going to start the prednisone the next day and ironically, my symptoms began to diminish that morning so I did not start the meds. A later CT of chest revealed a bunch of inflammation. Luckily I was able to stay on the nivo only as symptoms continued to slowly resolve themselves but it was a close call and I was almost denied further nivo treatments. I had also had radiation therapy not long ago and it was determined that the problem was more likely whats called radiation pneumonitis. I am still dealing with mild symptoms months later, with slight shortness of breath, and an intermittent hacking cough.
Gary
-
- March 10, 2016 at 4:54 am
Just circling back for the record and in case this is helpful to someone else down the road….the results of my bronchoscopy showed no signs of infection (particularly the PCP that was in question). It's inflammation and I am to stay on predisone until I can wean off and get on the nivo maintenance plan. Doctors monitoring closely (weekly) for blood draws, new emerging side effects, and overall appearance.
Am feeling for the first time in weeks that I will finally move on from this episode….plan in place and in motion…
-
- March 10, 2016 at 4:54 am
Just circling back for the record and in case this is helpful to someone else down the road….the results of my bronchoscopy showed no signs of infection (particularly the PCP that was in question). It's inflammation and I am to stay on predisone until I can wean off and get on the nivo maintenance plan. Doctors monitoring closely (weekly) for blood draws, new emerging side effects, and overall appearance.
Am feeling for the first time in weeks that I will finally move on from this episode….plan in place and in motion…
-
- March 10, 2016 at 4:54 am
Just circling back for the record and in case this is helpful to someone else down the road….the results of my bronchoscopy showed no signs of infection (particularly the PCP that was in question). It's inflammation and I am to stay on predisone until I can wean off and get on the nivo maintenance plan. Doctors monitoring closely (weekly) for blood draws, new emerging side effects, and overall appearance.
Am feeling for the first time in weeks that I will finally move on from this episode….plan in place and in motion…
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