› Forums › General Melanoma Community › Effect of steroids on outcomes for melanoma patients on immunotherapy??
- This topic has 9 replies, 5 voices, and was last updated 5 years, 9 months ago by
Bubbles.
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- July 21, 2018 at 1:57 pm
Because this is super important for so many of us (and I don't want any of you to freak out if you should see either of these reports in any sort of dramatic headline!!!!) I put together this post:
I am far from the end all/be all here!!! But, I have put together "my take" on what these two reports are saying, with my overall conclusion being this:
'…When something seems simple in melanoma….we should realize, "NOPE! Melanoma gonna be crazy! You'll see!!!" Still, these are only two studies among YEARS of other research that indicates treatment of side effects caused by immunotherapy, with steroids, did not diminish the good response in patients with melanoma. And, like the first report above, we have some indication that side effects may even be an indicator of a good response AGAINST melanoma. Additionally, if you are dealing with a potentially deadly side effect…and you die from it because it went untreated….how good is your outcome going to be then???? However, I do think these results tell us that we should continue to look at this issue and be as conservative in management of side effects with steroids (ie doing so only when really needed and with the lowest effective dose) as possible!'
For what it's worth…. Check out the reports if you are interested. Hang tough and have a great weekend!!! – c
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- July 22, 2018 at 2:17 am
I have been through the ringer lately with Nivo monotherapy AE's. Between colitis, acute myocarditis, diabetes, and now severe joint swelling and pain, it has been a tough four months. I have been on high dose steroids 3 times and infliximab once only to have problems return when weined. I am now prescribed Actemra that my healthcare team believes will fix the problem without neutralizing the immunotherapy treatment. MDA requests you join a "study" every time a side effect is documented and apparently infliximab (by far my best relief of symptoms) does not have a good track record for staying NED according to my rheumatologist.
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- July 22, 2018 at 3:51 pm
So sorry for all that you have gone through. You certainly have to treat side effects in order to survive THEM, so it really does put melanoma peeps who have significant side effects between a rock and a hard place. There are a couple peeps who had to take infliximab on this forum ("Jubes" is one). She has done very well. She did develop one solitary tumor after immunotherapy and after infliximab. However, she had surgery to have it removed and has remained disease free since with no further treatment (as I recall…you can look up her posts). So who is to say what caused that tumor? Unfortunately, melanoma peeps are still canaries in the coal mines. Hang in there. c
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- July 22, 2018 at 1:51 pm
Hi Celeste, I tried to find data on the first trial (retrospective by Faje) but could only get the preview to the article, you wouldn't happen to have the full article that I could take a look at? What I found at the bottom of the preview was a link to data that wasn't very detailed and showed only 20 patients in the low dose group, which isn't a very big sample. The other question I had was how much steroid was considered high and also did these patients have other treatments after the ipi since only about 20% have long term success, I would assume they moved on to something else. I was looking at the checkmate 067 data to see if there was any talk of this kind of pattern and didn't find anything. They did say that most IRAE's of the grade 3/4 level resolved within 3 to 4 weeks except endocrine that may led to long term hormone therapy but they didn't give a steroid level or amount in the article. Of the 315 patients who had ipi monotherapy 5 or 2% had grade 3/4 Hypophysitis, it would be nice if the data showed if they continued on to another treatment or response rate but it doesn't go into that level of detail. In the Supplementary appendix of "Table one" in the article below it gives all the details of checkmate 067 trial. Take Care!!!Ed https://www.nejm.org/doi/full/10.1056/NEJMoa1709684
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- July 22, 2018 at 4:06 pm
Those are the very questions I had, Ed! No, I don't have the complete article, but will share it should I find it. We have years of data…I have things dating back to 2015…that note no impact on outcomes for those who have been treated with steroids to manage side effects vs melanoma peeps on immunotherapy who have not. So, I don't want anyone to panic over this vaguely presented study. (I have found that when the abstract leaves this many questions unanswered, the real paper is lacking in serious data! But, that doesn't stop some outfits from putting out eye catching headlines!) Additionally, I have followed the data regarding side effects as they relate to outcomes for years. I mean, I think if folks have to suffer hypophysitis, they DESERVE to have a good result ! HA! However, thus far, the data has only been able to tease out skin rash and vitiligo as side effects definitively associated with better outcomes. So, we shall see. I would assume, and it seems to be the case from what folks say on this forum…not to mention what all the Melanoma Big Dogs advise…that docs are treating folks with steroids and other drugs to manage immune related side effects…only when needed and at the lowest possible doses – cause that makes sense! Keep digging you awesome sleuth you!!! love ya! c
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- July 22, 2018 at 7:03 pm
Celeste, as always, interesting info. For the many folks surviving post ipi-nivo, I wonder if there are any that didn't have some side effect requiring prednisone along the way. Not that you were suggesting otherwise, but I would not hesitate for a moment to use prednisone as needed. As you suggest, I would aim to keep the dosage as low as possible and taper off as soon as possible–but more in an effort to avoid the long term effects of prednisone versus jeopardizing treatment effect. The long term effects can suck, but they are not as sucky as active melanoma.
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- July 22, 2018 at 10:40 pm
Absolutely and steroids don't inhibit the immunotherapy action as once thought. I saw that on http://www.melanomaforum.org
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- July 23, 2018 at 1:05 am
Well, if it was on Melanoma forum .org then it must be right, right??? Or another way to look at it Anon, is let's not let Science research get in the way of opinions.
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