› Forums › General Melanoma Community › If they put me on steroids
- This topic has 39 replies, 7 voices, and was last updated 8 years, 7 months ago by
casagrayson.
- Post
-
- August 29, 2015 at 1:25 pm
I'm taking Nivolumab. I've had very slow yet steady progress. Currently my liver is inflamed and my oncologist is talking about putting me on steroids Monday to reduce the swelling and take away the liver pain. I realize I should've asked her this question when I was there, but I just didn't. If she puts me on steroids, will she just write the prescription that I'll have filled locally? Or will this involve a hospital stay so they can be playing with the dosage and monitoring me closely?
just trying to make my plan for next week and don't know if I can plan one day for this or if I need to plan a little time in the hospital.
Any info is appreciated.
- Replies
-
-
- August 29, 2015 at 2:28 pm
Hey Thandster,
Great about the steady progress on nivo! Sorry about the liver problems. If your onc didn't admit you at the start of your symptoms (or recognition of the problem), I doubt she will now unless some other problem develops. I'm sure your labs and/or scans will be followed to check your progress and that may require additional visits. Of course, I can't know for sure…but that's my best guess! One more bit of reassurance for you…. Check out Brian P's thread below. Roughly it notes that while side effects to immunotherapy don't necessarily indicate you are having a better response to treatment…or not….treating the side effects with steroids or other meds does NOT diminish your chance at positive effects. Wishing you my best. Celeste
-
- August 29, 2015 at 2:28 pm
Hey Thandster,
Great about the steady progress on nivo! Sorry about the liver problems. If your onc didn't admit you at the start of your symptoms (or recognition of the problem), I doubt she will now unless some other problem develops. I'm sure your labs and/or scans will be followed to check your progress and that may require additional visits. Of course, I can't know for sure…but that's my best guess! One more bit of reassurance for you…. Check out Brian P's thread below. Roughly it notes that while side effects to immunotherapy don't necessarily indicate you are having a better response to treatment…or not….treating the side effects with steroids or other meds does NOT diminish your chance at positive effects. Wishing you my best. Celeste
-
- August 29, 2015 at 2:28 pm
Hey Thandster,
Great about the steady progress on nivo! Sorry about the liver problems. If your onc didn't admit you at the start of your symptoms (or recognition of the problem), I doubt she will now unless some other problem develops. I'm sure your labs and/or scans will be followed to check your progress and that may require additional visits. Of course, I can't know for sure…but that's my best guess! One more bit of reassurance for you…. Check out Brian P's thread below. Roughly it notes that while side effects to immunotherapy don't necessarily indicate you are having a better response to treatment…or not….treating the side effects with steroids or other meds does NOT diminish your chance at positive effects. Wishing you my best. Celeste
-
- August 29, 2015 at 6:12 pm
Dr. Weber from Moffit…. "Absolutely, do not take steroids when doing Immunotherapy…suppresses the immune system."
-
- August 29, 2015 at 7:14 pm
Nice anonymous. I'll listen to some nameless faceless post because I have every reason to believe you know what you're talking about. So I'll just let my liver continue to swell until it stops functioning. Then I'll be what???? DEAD!
thank you for such good info
-
- August 29, 2015 at 7:14 pm
Nice anonymous. I'll listen to some nameless faceless post because I have every reason to believe you know what you're talking about. So I'll just let my liver continue to swell until it stops functioning. Then I'll be what???? DEAD!
thank you for such good info
-
- August 30, 2015 at 7:17 pm
Yep. Steroids suppress the immune system. But sometimes the benefits greatly outweigh the risk. There are no absolutes!
-
- August 30, 2015 at 7:17 pm
Yep. Steroids suppress the immune system. But sometimes the benefits greatly outweigh the risk. There are no absolutes!
-
- August 30, 2015 at 7:17 pm
Yep. Steroids suppress the immune system. But sometimes the benefits greatly outweigh the risk. There are no absolutes!
-
- August 30, 2015 at 10:53 pm
My main point was that my question was about planning my week and would I have to stay in the hospital. I in NO way suggested that I needed advice about the treatment and what to do. Will I be in the hospital overnight or not? I received one post that actually addressed the question I asked.
-
- August 30, 2015 at 10:53 pm
My main point was that my question was about planning my week and would I have to stay in the hospital. I in NO way suggested that I needed advice about the treatment and what to do. Will I be in the hospital overnight or not? I received one post that actually addressed the question I asked.
-
- August 31, 2015 at 3:10 pm
I certainly can't give you a definitive answer because I have never been in your situation, but I would assume this would just be an oral steroid that you take at home over the course of a week to ten days.
-
- August 31, 2015 at 3:10 pm
I certainly can't give you a definitive answer because I have never been in your situation, but I would assume this would just be an oral steroid that you take at home over the course of a week to ten days.
-
- August 31, 2015 at 3:10 pm
I certainly can't give you a definitive answer because I have never been in your situation, but I would assume this would just be an oral steroid that you take at home over the course of a week to ten days.
-
- August 30, 2015 at 10:53 pm
My main point was that my question was about planning my week and would I have to stay in the hospital. I in NO way suggested that I needed advice about the treatment and what to do. Will I be in the hospital overnight or not? I received one post that actually addressed the question I asked.
-
- August 29, 2015 at 7:14 pm
Nice anonymous. I'll listen to some nameless faceless post because I have every reason to believe you know what you're talking about. So I'll just let my liver continue to swell until it stops functioning. Then I'll be what???? DEAD!
thank you for such good info
-
- August 29, 2015 at 8:21 pm
Wow, anon's are sooooo smart!!! AND….up-to-date!!! Weber has been my oncologist since 2010. Guess who said this??????
"Drug related AE's to nivo were primarily low grade and the incidence of grade 3/4 drug related AE's was not affected by prior ipi. Nearly all grade 3/4 AE's resolved with steroids which did NOT appear to impact on tumor response."
Yep, Weber…that's who…along with a lot of other smart peeps who publish data under their name!!! Quote is within: Safety profile in nivolumab in patients with advanced melanoma: A pooled analysis. J Clin Oncol 33, 2015. Weber, Antonia, Topalian, Schandendorf, Sznol, et al. From ASCO 2015
Here's a link to that article and others: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-adverse-effects-from-nivo-and.html
And another out this month: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/immune-related-side-effects-from.html
Best of luck, Thandster! c
-
- August 29, 2015 at 8:21 pm
Wow, anon's are sooooo smart!!! AND….up-to-date!!! Weber has been my oncologist since 2010. Guess who said this??????
"Drug related AE's to nivo were primarily low grade and the incidence of grade 3/4 drug related AE's was not affected by prior ipi. Nearly all grade 3/4 AE's resolved with steroids which did NOT appear to impact on tumor response."
Yep, Weber…that's who…along with a lot of other smart peeps who publish data under their name!!! Quote is within: Safety profile in nivolumab in patients with advanced melanoma: A pooled analysis. J Clin Oncol 33, 2015. Weber, Antonia, Topalian, Schandendorf, Sznol, et al. From ASCO 2015
Here's a link to that article and others: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-adverse-effects-from-nivo-and.html
And another out this month: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/immune-related-side-effects-from.html
Best of luck, Thandster! c
-
- August 29, 2015 at 9:33 pm
Thank you for all the info Celeste. I was at my oncologist yesterday and she brought up the steroids and I was trying to avoid it because I was worried it would hurt the Nivo. So she agreed to re-check bloodwork Monday and decide then. Thing that sucks is that it's a 2 hour drive. I came back last night hoping things would improve so I didn't have to take the steroid, then this morning read Brian's post and your links there. I'm completely kicking myself for not just doing what she said. I've been stage 4 for about 3 months and she's pulled me back from deaths door a couple times already and still I question her. Oh well. I'll make another trip.
Thanks again for all of the info.
-
- August 29, 2015 at 9:33 pm
Thank you for all the info Celeste. I was at my oncologist yesterday and she brought up the steroids and I was trying to avoid it because I was worried it would hurt the Nivo. So she agreed to re-check bloodwork Monday and decide then. Thing that sucks is that it's a 2 hour drive. I came back last night hoping things would improve so I didn't have to take the steroid, then this morning read Brian's post and your links there. I'm completely kicking myself for not just doing what she said. I've been stage 4 for about 3 months and she's pulled me back from deaths door a couple times already and still I question her. Oh well. I'll make another trip.
Thanks again for all of the info.
-
- August 30, 2015 at 1:15 am
Husband (stage iv) has been on keytruda for 8os now with very slow response but non the less response. Had pretty significant pneumonitis of the lungs 2mos ago so so due to keytruda siDE effect. On high hose steroid for 6 weeks. The one lymph node that is the largest went from golf ball to tennis ball size on steroid. As soon as next infusion started after weened of ateeoid, node immediately shrunk down to golf ball again. Like u stated above, it was either steroids for him or death from lung infection….no brainer. Good luck to you… -
- August 30, 2015 at 1:15 am
Husband (stage iv) has been on keytruda for 8os now with very slow response but non the less response. Had pretty significant pneumonitis of the lungs 2mos ago so so due to keytruda siDE effect. On high hose steroid for 6 weeks. The one lymph node that is the largest went from golf ball to tennis ball size on steroid. As soon as next infusion started after weened of ateeoid, node immediately shrunk down to golf ball again. Like u stated above, it was either steroids for him or death from lung infection….no brainer. Good luck to you… -
- August 30, 2015 at 1:15 am
Husband (stage iv) has been on keytruda for 8os now with very slow response but non the less response. Had pretty significant pneumonitis of the lungs 2mos ago so so due to keytruda siDE effect. On high hose steroid for 6 weeks. The one lymph node that is the largest went from golf ball to tennis ball size on steroid. As soon as next infusion started after weened of ateeoid, node immediately shrunk down to golf ball again. Like u stated above, it was either steroids for him or death from lung infection….no brainer. Good luck to you… -
- August 29, 2015 at 9:33 pm
Thank you for all the info Celeste. I was at my oncologist yesterday and she brought up the steroids and I was trying to avoid it because I was worried it would hurt the Nivo. So she agreed to re-check bloodwork Monday and decide then. Thing that sucks is that it's a 2 hour drive. I came back last night hoping things would improve so I didn't have to take the steroid, then this morning read Brian's post and your links there. I'm completely kicking myself for not just doing what she said. I've been stage 4 for about 3 months and she's pulled me back from deaths door a couple times already and still I question her. Oh well. I'll make another trip.
Thanks again for all of the info.
-
- August 29, 2015 at 8:21 pm
Wow, anon's are sooooo smart!!! AND….up-to-date!!! Weber has been my oncologist since 2010. Guess who said this??????
"Drug related AE's to nivo were primarily low grade and the incidence of grade 3/4 drug related AE's was not affected by prior ipi. Nearly all grade 3/4 AE's resolved with steroids which did NOT appear to impact on tumor response."
Yep, Weber…that's who…along with a lot of other smart peeps who publish data under their name!!! Quote is within: Safety profile in nivolumab in patients with advanced melanoma: A pooled analysis. J Clin Oncol 33, 2015. Weber, Antonia, Topalian, Schandendorf, Sznol, et al. From ASCO 2015
Here's a link to that article and others: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-adverse-effects-from-nivo-and.html
And another out this month: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/immune-related-side-effects-from.html
Best of luck, Thandster! c
-
- August 31, 2015 at 6:24 am
Steroids (at least the one my son is on – Decadron) can be filled anywhere and will reduce the edema/swelling and is helpful for the rashes that are a common side effect. They will also give you increased energy and increased appetite. (my son gained 8 lbs in 7 days). This being said, steroids also interfer with Ketruda, making the treatment ineffective. I would think that unless the swelling is life-threatening, you shouldn't go on the steroids. Except our Dr. just said that ketruda could be still effective when patients have started it and then used steroids to treat rashes.
My son has to be on steroids because he has over 40 brain mets, all of them swelling , putting pressure on his brain, causing a heart-breaking decline both cognitive and physical(strength,balance,coordination). Everytime we try weaning him off the steroids he declines. We were trying to wean him off because he is getting th infusion, too. He went on steroids the 2nd day after his 1st infusion, and has to stay on them because it is the only thing that keeps the swelling down.
Best to you,
SarahAt. .
-
- August 31, 2015 at 6:24 am
Steroids (at least the one my son is on – Decadron) can be filled anywhere and will reduce the edema/swelling and is helpful for the rashes that are a common side effect. They will also give you increased energy and increased appetite. (my son gained 8 lbs in 7 days). This being said, steroids also interfer with Ketruda, making the treatment ineffective. I would think that unless the swelling is life-threatening, you shouldn't go on the steroids. Except our Dr. just said that ketruda could be still effective when patients have started it and then used steroids to treat rashes.
My son has to be on steroids because he has over 40 brain mets, all of them swelling , putting pressure on his brain, causing a heart-breaking decline both cognitive and physical(strength,balance,coordination). Everytime we try weaning him off the steroids he declines. We were trying to wean him off because he is getting th infusion, too. He went on steroids the 2nd day after his 1st infusion, and has to stay on them because it is the only thing that keeps the swelling down.
Best to you,
SarahAt. .
-
- August 31, 2015 at 6:24 am
Steroids (at least the one my son is on – Decadron) can be filled anywhere and will reduce the edema/swelling and is helpful for the rashes that are a common side effect. They will also give you increased energy and increased appetite. (my son gained 8 lbs in 7 days). This being said, steroids also interfer with Ketruda, making the treatment ineffective. I would think that unless the swelling is life-threatening, you shouldn't go on the steroids. Except our Dr. just said that ketruda could be still effective when patients have started it and then used steroids to treat rashes.
My son has to be on steroids because he has over 40 brain mets, all of them swelling , putting pressure on his brain, causing a heart-breaking decline both cognitive and physical(strength,balance,coordination). Everytime we try weaning him off the steroids he declines. We were trying to wean him off because he is getting th infusion, too. He went on steroids the 2nd day after his 1st infusion, and has to stay on them because it is the only thing that keeps the swelling down.
Best to you,
SarahAt. .
-
- August 31, 2015 at 6:26 am
Steroids (at least the one my son is on – Decadron) can be filled anywhere and will reduce the edema/swelling and is helpful for the rashes that are a common side effect. They will also give you increased energy and increased appetite. (my son gained 8 lbs in 7 days). This being said, steroids also interfer with Ketruda, making the treatment ineffective. I would think that unless the swelling is life-threatening, you shouldn't go on the steroids. Except our Dr. just said that ketruda could be still effective when patients have started it and then used steroids to treat rashes.
My son has to be on steroids because he has over 40 brain mets, all of them swelling , putting pressure on his brain, causing a heart-breaking decline both cognitive and physical(strength,balance,coordination). Everytime we try weaning him off the steroids he declines. We were trying to wean him off because he is getting th infusion, too. He went on steroids the 2nd day after his 1st infusion, and has to stay on them because it is the only thing that keeps the swelling down.
Best to you,
SarahA. .
-
- August 31, 2015 at 6:50 am
I didn't realize i posted my response 2 times.. Can you delete a post? Also, I saw that (Bubbles?) had a link and I tried to creat a link and wasn't able too. Thirdly, I'm a newbie. I've only posted or replied a coupleof times- my keyboarding sucks so it's hard to spend the time, but have had wonderful responses. I love what I read, and hearing other stories. Thank you all for that.
People, including Oncologist, said not to go on steroids while you take katruda, so I can't tell you how RELIEVED I am to hear it doesn't interfer with tumor response. (i didn't understand someof that info, though, too medical) I have been so fearful for my son, because several drs. have written him off, or so it seems, with their sad "there is no hope" looks when they see the scans.
SarahA.
-
- August 31, 2015 at 6:50 am
I didn't realize i posted my response 2 times.. Can you delete a post? Also, I saw that (Bubbles?) had a link and I tried to creat a link and wasn't able too. Thirdly, I'm a newbie. I've only posted or replied a coupleof times- my keyboarding sucks so it's hard to spend the time, but have had wonderful responses. I love what I read, and hearing other stories. Thank you all for that.
People, including Oncologist, said not to go on steroids while you take katruda, so I can't tell you how RELIEVED I am to hear it doesn't interfer with tumor response. (i didn't understand someof that info, though, too medical) I have been so fearful for my son, because several drs. have written him off, or so it seems, with their sad "there is no hope" looks when they see the scans.
SarahA.
-
- August 31, 2015 at 6:50 am
I didn't realize i posted my response 2 times.. Can you delete a post? Also, I saw that (Bubbles?) had a link and I tried to creat a link and wasn't able too. Thirdly, I'm a newbie. I've only posted or replied a coupleof times- my keyboarding sucks so it's hard to spend the time, but have had wonderful responses. I love what I read, and hearing other stories. Thank you all for that.
People, including Oncologist, said not to go on steroids while you take katruda, so I can't tell you how RELIEVED I am to hear it doesn't interfer with tumor response. (i didn't understand someof that info, though, too medical) I have been so fearful for my son, because several drs. have written him off, or so it seems, with their sad "there is no hope" looks when they see the scans.
SarahA.
-
- August 31, 2015 at 6:26 am
Steroids (at least the one my son is on – Decadron) can be filled anywhere and will reduce the edema/swelling and is helpful for the rashes that are a common side effect. They will also give you increased energy and increased appetite. (my son gained 8 lbs in 7 days). This being said, steroids also interfer with Ketruda, making the treatment ineffective. I would think that unless the swelling is life-threatening, you shouldn't go on the steroids. Except our Dr. just said that ketruda could be still effective when patients have started it and then used steroids to treat rashes.
My son has to be on steroids because he has over 40 brain mets, all of them swelling , putting pressure on his brain, causing a heart-breaking decline both cognitive and physical(strength,balance,coordination). Everytime we try weaning him off the steroids he declines. We were trying to wean him off because he is getting th infusion, too. He went on steroids the 2nd day after his 1st infusion, and has to stay on them because it is the only thing that keeps the swelling down.
Best to you,
SarahA. .
-
- August 31, 2015 at 6:26 am
Steroids (at least the one my son is on – Decadron) can be filled anywhere and will reduce the edema/swelling and is helpful for the rashes that are a common side effect. They will also give you increased energy and increased appetite. (my son gained 8 lbs in 7 days). This being said, steroids also interfer with Ketruda, making the treatment ineffective. I would think that unless the swelling is life-threatening, you shouldn't go on the steroids. Except our Dr. just said that ketruda could be still effective when patients have started it and then used steroids to treat rashes.
My son has to be on steroids because he has over 40 brain mets, all of them swelling , putting pressure on his brain, causing a heart-breaking decline both cognitive and physical(strength,balance,coordination). Everytime we try weaning him off the steroids he declines. We were trying to wean him off because he is getting th infusion, too. He went on steroids the 2nd day after his 1st infusion, and has to stay on them because it is the only thing that keeps the swelling down.
Best to you,
SarahA. .
-
- You must be logged in to reply to this topic.