› Forums › General Melanoma Community › Four months into keytruda/ lung problems
- This topic has 29 replies, 6 voices, and was last updated 8 years ago by
AB.
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- April 6, 2016 at 6:31 pm
Does anybody have any information about difficulty with a cough/coughing up blood And endless " bronchitis" while on Keytruda?
They postponed a couple of my treatments to put me through pulmonary exams and cardio exams and came to the conclusion I have bronchitis not pneumonitis which would be a side effect of the immunotherapy. But it won't go away. It's been about 2 1/2 months of and was coughing and pain in my lungs. My tumors are gone but I'm exhausted. We've tried all kinds of decongestants, steroids and whatnot. Nothing's working. Any insight would be appreciated. Thanks.
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- April 7, 2016 at 1:09 pm
I don't really know that this will be helpful as it sounds like you have had a lot of testing and treatments…but: Pneumonitis is a well known side effect from anti-PD1 and is treated with a break and steroids….which it sounds like you have already done. Have you been treated with albuterol nebulized breathing treatments (or at least an inhaler) and inhaled steroids like pulmicort or flovent? I ask because asthma is adults if often misdiagnosed as bronchitis. Additionally…it doesn't sound as though you were a kid with asthma (as I was) but I have a personal belief (substantiated somewhat by all my reading) that immunotherapy can exacerbate underlying problems that didn't trouble us much or at all before the immunotherapy (I'm thinking of arthralgias and arthritis, etc.). I had significant problems with asthma flares (and mild pneumonitis once) while on Opdivo. Now that I've been off for several years….my known asthma…is back to its usual self. So…if you haven't already….giving albuterol and an inhaled steroid a try may give you some relief…and wouldn't hurt! However, you may have already been there done that! I wish you well. Celeste
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- April 7, 2016 at 1:09 pm
I don't really know that this will be helpful as it sounds like you have had a lot of testing and treatments…but: Pneumonitis is a well known side effect from anti-PD1 and is treated with a break and steroids….which it sounds like you have already done. Have you been treated with albuterol nebulized breathing treatments (or at least an inhaler) and inhaled steroids like pulmicort or flovent? I ask because asthma is adults if often misdiagnosed as bronchitis. Additionally…it doesn't sound as though you were a kid with asthma (as I was) but I have a personal belief (substantiated somewhat by all my reading) that immunotherapy can exacerbate underlying problems that didn't trouble us much or at all before the immunotherapy (I'm thinking of arthralgias and arthritis, etc.). I had significant problems with asthma flares (and mild pneumonitis once) while on Opdivo. Now that I've been off for several years….my known asthma…is back to its usual self. So…if you haven't already….giving albuterol and an inhaled steroid a try may give you some relief…and wouldn't hurt! However, you may have already been there done that! I wish you well. Celeste
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- April 7, 2016 at 1:19 pm
FYI – I recently saw a melanoma specialist (cutaneous oncologist) at the Moffitt Center in Tampa. He told me that I should avoid steroids as much as possible as it stunts ones auto immune response when you have melanoma. (I had been on a short dose of steroids for a chronic cough).
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- April 7, 2016 at 1:19 pm
FYI – I recently saw a melanoma specialist (cutaneous oncologist) at the Moffitt Center in Tampa. He told me that I should avoid steroids as much as possible as it stunts ones auto immune response when you have melanoma. (I had been on a short dose of steroids for a chronic cough).
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- April 13, 2016 at 8:12 pm
It's such a relief to hear that I am not the only patient with bronchitis/cough. I will be having my 16th Keytruda infusion, and I have become more unwell as time has gone on. I've had my second bout of bronchitis. Both times they gave me antibiotics, but like you, it lasted about 3 months. My thyroid is now so low and my blood pressure is high, along with my blood sugar. I was also given an inhaler, which helps at times. Last time my oncologist mentioned taking a vacation, and I automatically said no, but now am rethinking.
Cheris
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- April 13, 2016 at 8:12 pm
It's such a relief to hear that I am not the only patient with bronchitis/cough. I will be having my 16th Keytruda infusion, and I have become more unwell as time has gone on. I've had my second bout of bronchitis. Both times they gave me antibiotics, but like you, it lasted about 3 months. My thyroid is now so low and my blood pressure is high, along with my blood sugar. I was also given an inhaler, which helps at times. Last time my oncologist mentioned taking a vacation, and I automatically said no, but now am rethinking.
Cheris
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- April 13, 2016 at 8:12 pm
It's such a relief to hear that I am not the only patient with bronchitis/cough. I will be having my 16th Keytruda infusion, and I have become more unwell as time has gone on. I've had my second bout of bronchitis. Both times they gave me antibiotics, but like you, it lasted about 3 months. My thyroid is now so low and my blood pressure is high, along with my blood sugar. I was also given an inhaler, which helps at times. Last time my oncologist mentioned taking a vacation, and I automatically said no, but now am rethinking.
Cheris
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- April 7, 2016 at 1:19 pm
FYI – I recently saw a melanoma specialist (cutaneous oncologist) at the Moffitt Center in Tampa. He told me that I should avoid steroids as much as possible as it stunts ones auto immune response when you have melanoma. (I had been on a short dose of steroids for a chronic cough).
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- April 8, 2016 at 7:41 pm
Thank you for your reply! I totally agree with everything you say. And I've asked my doctors, several of them, about an inhaler but they just keep handing me more prednisone. Not a fan of Prednisone! That, and they keep redoing the same tests. The pulmonologist did mention potential asthma but I had never had it before. Of course that doesn't preclude being a possible underlying condition, as you said. So frustrated. But thank you for confirming what I was thinking.
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- April 8, 2016 at 7:41 pm
Thank you for your reply! I totally agree with everything you say. And I've asked my doctors, several of them, about an inhaler but they just keep handing me more prednisone. Not a fan of Prednisone! That, and they keep redoing the same tests. The pulmonologist did mention potential asthma but I had never had it before. Of course that doesn't preclude being a possible underlying condition, as you said. So frustrated. But thank you for confirming what I was thinking.
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- April 8, 2016 at 7:41 pm
Thank you for your reply! I totally agree with everything you say. And I've asked my doctors, several of them, about an inhaler but they just keep handing me more prednisone. Not a fan of Prednisone! That, and they keep redoing the same tests. The pulmonologist did mention potential asthma but I had never had it before. Of course that doesn't preclude being a possible underlying condition, as you said. So frustrated. But thank you for confirming what I was thinking.
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- April 7, 2016 at 1:09 pm
I don't really know that this will be helpful as it sounds like you have had a lot of testing and treatments…but: Pneumonitis is a well known side effect from anti-PD1 and is treated with a break and steroids….which it sounds like you have already done. Have you been treated with albuterol nebulized breathing treatments (or at least an inhaler) and inhaled steroids like pulmicort or flovent? I ask because asthma is adults if often misdiagnosed as bronchitis. Additionally…it doesn't sound as though you were a kid with asthma (as I was) but I have a personal belief (substantiated somewhat by all my reading) that immunotherapy can exacerbate underlying problems that didn't trouble us much or at all before the immunotherapy (I'm thinking of arthralgias and arthritis, etc.). I had significant problems with asthma flares (and mild pneumonitis once) while on Opdivo. Now that I've been off for several years….my known asthma…is back to its usual self. So…if you haven't already….giving albuterol and an inhaled steroid a try may give you some relief…and wouldn't hurt! However, you may have already been there done that! I wish you well. Celeste
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- April 7, 2016 at 1:37 pm
Just a bit more info: While at first avoided due to the thought that steriods would impede a response by immunotherapy upon melanoma….we have long learned differently. Here is a webinar on how to treat side effects by two world renowned melanoma experts: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html
While one would NOT choose steroids unless absolutely needed…we have learned that for life threatening and debilitating problems like pneumonitis, colitis, and arthritis….steroids can save the patient's life, contain symptoms and allow them to continue needed immunotherapy once the flare has been controlled!!!! Additionally, INHALED steroids are pretty nifty as they work only in the lungs where they are needed without significant risk of systemic effects.
For what it's worth. c
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- April 7, 2016 at 1:37 pm
Just a bit more info: While at first avoided due to the thought that steriods would impede a response by immunotherapy upon melanoma….we have long learned differently. Here is a webinar on how to treat side effects by two world renowned melanoma experts: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html
While one would NOT choose steroids unless absolutely needed…we have learned that for life threatening and debilitating problems like pneumonitis, colitis, and arthritis….steroids can save the patient's life, contain symptoms and allow them to continue needed immunotherapy once the flare has been controlled!!!! Additionally, INHALED steroids are pretty nifty as they work only in the lungs where they are needed without significant risk of systemic effects.
For what it's worth. c
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- April 7, 2016 at 5:33 pm
My husband developed mild case of pnuemonitis after 5 mos of Keytruda last year. Cough, shortness of breath that wouldnt go away. He was a ridiculous high dose of prednisone for 6 weeks and his pneumonitis was mild. The damange to your lungs this type of thing can cuase certainly outweighs not being on prednisone if that ends up being what it is. FYI….his tumors grew while on streroid but the lung issue was nothing to mess with for sure. It went away after teh 6 weeks and treatmetn started up again. I think he was on 120mg 2x day for a while before tapering down.
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- April 7, 2016 at 5:33 pm
My husband developed mild case of pnuemonitis after 5 mos of Keytruda last year. Cough, shortness of breath that wouldnt go away. He was a ridiculous high dose of prednisone for 6 weeks and his pneumonitis was mild. The damange to your lungs this type of thing can cuase certainly outweighs not being on prednisone if that ends up being what it is. FYI….his tumors grew while on streroid but the lung issue was nothing to mess with for sure. It went away after teh 6 weeks and treatmetn started up again. I think he was on 120mg 2x day for a while before tapering down.
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- April 7, 2016 at 5:33 pm
My husband developed mild case of pnuemonitis after 5 mos of Keytruda last year. Cough, shortness of breath that wouldnt go away. He was a ridiculous high dose of prednisone for 6 weeks and his pneumonitis was mild. The damange to your lungs this type of thing can cuase certainly outweighs not being on prednisone if that ends up being what it is. FYI….his tumors grew while on streroid but the lung issue was nothing to mess with for sure. It went away after teh 6 weeks and treatmetn started up again. I think he was on 120mg 2x day for a while before tapering down.
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- April 8, 2016 at 7:46 pm
Re: Four months into keytruda/ lung problems
Sfern5 – (4/8/2016 – 3:43pm)
Thanks again! Excellent information! I'm going to try and get the inhaler instead of the oral steroids. They're very tough on me. But you're right, it's better then the other choices. You've been very helpful! Ty
Cancer, Schmancer.
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- April 8, 2016 at 7:46 pm
Re: Four months into keytruda/ lung problems
Sfern5 – (4/8/2016 – 3:43pm)
Thanks again! Excellent information! I'm going to try and get the inhaler instead of the oral steroids. They're very tough on me. But you're right, it's better then the other choices. You've been very helpful! Ty
Cancer, Schmancer.
-
- April 7, 2016 at 1:37 pm
Just a bit more info: While at first avoided due to the thought that steriods would impede a response by immunotherapy upon melanoma….we have long learned differently. Here is a webinar on how to treat side effects by two world renowned melanoma experts: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html
While one would NOT choose steroids unless absolutely needed…we have learned that for life threatening and debilitating problems like pneumonitis, colitis, and arthritis….steroids can save the patient's life, contain symptoms and allow them to continue needed immunotherapy once the flare has been controlled!!!! Additionally, INHALED steroids are pretty nifty as they work only in the lungs where they are needed without significant risk of systemic effects.
For what it's worth. c
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- February 27, 2017 at 2:10 am
Help! I am having the same problem. I can't get better, and would rather be dead than live like this the rest of my life. My quality of life is terrible. I want from tri-athlete to try- to get out of bed, and my oncologist just says it's not related. I really need another oncologist too.
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- April 27, 2017 at 2:31 am
Follow up : NED and felt great from 3/1- now!
I knew 2 weeks after my 1st infusion, on 2.3.17, that it was working. The ping pong sized lymph nodes on both sides of my hip/upper inside of leg had shrunk.
keytruda side effects have been minimal- can only do 2 hours of cardio band yoga daily- that's 1 less hour- I'm not as fast, a little achy at times and a little itchy.
3 infusions later- I'm NED. I had 5 tumors in my right leg the size between a plum and a tennis ball and they, as well as the lymph node cancer is all gone.
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Thanks again! Excellent information! I'm going to try and get the inhaler instead of the oral steroids. They're very tough on me. But you're right, it's better then the other choices. You've been very helpful! Ty