Hello. I am trying to determine the best course of action when my oncologist disagrees with my neurooncologist on the possible use of Mvasi as a steroid sparing agent and taper my current dose of dexamethasone 8mg/day. I received SRS to 9 brain mets for 6 sessions, ending 9/3. I began 10 spinal radiation treatments for a T12 met on 9/10 and the last treatment is scheduled 9/22. My oncologist would like me to increase my dex to 10mg/day but I held dex at 8mg/day. My oncologist would like me to start immunotherapy 9/23. I have yet to receive a taper schedule from her. My nuerooncologist would like me to start Mvasi on 9/23 along with immunotherapy. Oncologist does not agree with this treatment plan as she feels risk is too high for possible hematoma. One brain met is hemorrhagic (I don’t think she is worried about the hemorrhagic brain met but simply general hematoma risk). I have a brain MRI scheduled 9/19. I have had decreased RUE grip, increased RUE triggering, increased LLE pain, increased LLE numbness, and increased headaches since 9/12. I was under the impression that the spinal radiation will cause symptoms to increase in the short term but eventually decrease simply as a normal course and have not been too concerned about the increased symptoms but both the onc and neuroonc insisted on spine radiation prior to immunotherapy due to these increased symptoms post SRS.
- September 16, 2021 at 2:16 pm
Has anyone done a fast (just over a week?) taper of dex 8mg/day to 2-4mg/day and any ideas on the risk/benefit of using Mvasi to aid in steroid taper to reap the best benefit from immunotherapy. I have NRAS+, BRAF- melanoma so targeted therapies seem to be few and far between should I not be able to tolerate immunotherapy. It seems best results at ipi+nivo come without steroids on board.Thanks for any help you can offer. Also, prognosis of 4-5 months with brain mets and just radiation? Wow. That kinda sucks. I’m an RN and working full time, ride my bike, feel great.
FWIW, my neuroonc is with a smaller organization, my onc is with a university-level and I have also established care at Mayo. I have requested input from the Mayo onc but have been waiting since Monday for a reply. Getting antsy. 🙂
- September 16, 2021 at 2:28 pm
Second question – I have established care with MD Anderson also (gotta love RN healthcare) and wondered if that was overkill; however, they have so many more clinical trials than Mayo and with BRAF-, NRAS+ I’m feeling like I don’t have a lot of options. Best hope is that I can tolerate ipi+nivo AND that it works. I’m fuzzy on prognosis but I keep seeing 4-5 months for brain mets and I’m neurologically intact other than pain, neuropathy, saddle anesthesia (continent though), fatigue after working a 12-hour shift, so I got that going for me. 🙂
The best and most important advice I can give you is to see a melanoma specialist – for both regular oncology as well as radio-oncology. Or at least one who sees/treats lots of melanoma patients.
- September 16, 2021 at 3:58 pm
I am glad you are proceeding with your radiation. It is important! However, we have learned that melanoma responds best when radiation is used in COMBINATION with systemic therapy like the ipi/nivo combo. Here are a zillion reports covering many years: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation
Here are a zillion reports broken down by radiation and brain mets (there is some overlap): https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+brain+mets
So, I would definitely not delay starting immunotherapy. Yes, there are those who are concerned that immunotherapy can cause complications when it comes to brain tumors and radiation. However, we have also learned that this is not valid – or certainly not worth the chance of waiting on melanoma to do its thing!!! Here is a report about that specifically:
I am not sure how much good the avastin would do. There may well be those here who have info on that. However, I can’t see that there would be any harm. If your docs should start in on waiting to be off or weaned down on steroids before starting immunotherapy – again – DON’T wait! I recently put this post together regarding immunotherapy and steroids: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2021/09/what-to-do-about-immunotherapy-if-you.html
I know it is a lot to take in all at once. For all that melanoma sucks great big stinky hairy green wizard balls – there is hope. Granted the truly dark ages of melanoma, when there were no FDA approved targeted or immunotherapies, was only pre-2011. But we have learned a great deal since then and many of us on this forum have outlived out assigned expiration dates. I was Stage IIIb in 2003. Stage IV with brain and lung mets in 2010. However, after lung surgery, SRS to the brain and a phase 1 trial of nivolumab – I am still alive and kicking and NED for melanoma since 2010.
Hang tough. Ask more questions as you have the need. There are many smart caring peeps on this forum. I wish you my best. Celeste
I understand that Immunotherapy + brain SRS=good outcome, however, my oncologist totally dropped the ball and didn’t even start on immunotherapy approval until well after I completed the SRS so that ship has sailed. I am on way too much steroid right now, during spine radiation treatments, to start immunotherapy, so that ship is waiting to sail. Thus, the reason for my post. I want to start immunotherapy ASAP but 8-10mg of dex a day is not going to work with immunotherapy. So I TOTALLY and COMPLETELY am on board with immunotherapy. My holdup is the massive amount of dex I’m taking and figuring out how to drop that ASAP.
- September 16, 2021 at 8:42 pm
I found this study in your list https://jitc.biomedcentral.com/articles/10.1186/s40425-018-0371-5#Abs1 which concludes, “Dexamethasone blocks naïve T cell proliferation and differentiation by attenuating CD28 co-stimulation. Because co-stimulation is essential for successful T cell priming and expansion, these data suggest that corticosteroids impair response in immunotherapy treatment-naïve patients” which is my exact situation. “Steroid alternatives may need to be considered for patients with intracranial tumors who wish to enroll on immunotherapy trials. For example, blockade of vascular endothelial growth factor by bevacizumab reduces edema by normalizing tumor vasculature.”
I read the positive effect of ipi on dex suppression but the overall outcome is still decreased it appears.
Thanks so much
My opinion and far more importantly, that of many melanoma researchers differs regarding immunotherapy and steroids. YES! You CAN take immunotherapy and steroids. YES! You CAN still attain a good response if doing so! In fact, many folks on immunotherapy MUST take steroids while on said therapy in order to tolerate it!
- September 17, 2021 at 10:38 am
My response to the report I believe you reference was this: <b>First and foremost, this study was done by looking at cells in a petri dish and poor little real live mice. And, it seems as though the limiting effects created by dexamethasone (a steroid) on T cells was present when the cells were treated with anti-PD-1 but not when treated with ipi (Yervoy).</b>
Certainly, it would be best if no one on immunotherapy required the use of steroids, or it we had a better drug to deal with the conditions for which we use them. But, there is also this (along with many, many additional similar reports on my blog and in the literature): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/03/patients-with-preexisting-immune.html
In this study, folks with melanoma AND pre-existing immune conditions requiring a variety of immune suppressing meds were treated with immunotherapy. The researchers found –<i><u><b>All flares of preexisting autoimmune disorders or irAE were managed by immunosuppressive and/or symptomatic therapy and did not require termination of PD-1i therapy. tumour responses (32% in group A and 45% in group B) were unrelated to occurrence of autoimmunity.</b></u></i>I don’t blame you for wanting to diminish your dex dosage as quickly as you can. However, I would not let that be a prohibiting factor in attaining care that could get my melanoma under control. Still, we all have to do what we think is best for us as individuals. I wish you my best. celeste
Thanks so much Celeste. I know I’m coming off half crazed 🙂 and it is probably because the team I thought was going to lead the way has been in stasis all week and I”m getting no input from the melanoma oncologist and my primary oncologist is breast cancer (but she is at my workplace, which makes GETTING immunotherapy incredibly easy – she comes in early so I can come straight from work (I work 12-hour overnight shifts)) and that’s what I’ll do Friday, the first day of immunotherapy.
- September 17, 2021 at 11:19 am
My biggest issue is the amount of dex (I’m now on 10mg/day, which is over 67mg equivalent of prednisone, which seems to be what the studies base their OS numbers on) and I’m NRAS+. I feel I don’t have targeted therapies. I’m very concerned about giving myself my best shot at immunotherapy (ipi+nivo, and my onc wants to do the lesser amount) and to me that means going in LOW on dex, which has a long half-life so just tapering isn’t going to be enough IMO. ANd as of today I have 7 days to taper from 10mg/dex day to 2-4 for my best shot.
Maybe I’m borrowing trouble. I don’t know. I’ve been having RUE issues this week and my onc wants me to get an emergent MRI tomorrow if the increase in dex doesn’t fix that but she did say she is absolutely committed to ipi+nivo starting next Friday. So I guess I’m going in on the low dose and hoping for the best and maybe I’ll be in the percentage that responds and all this will have been for naught. 🙂 I live for backup plans though so this is a huge lesson in patience I guess.
I’m also hoping the Mayo melanoma onc will have some input on Avastin and I can just emergently stop the dex and go on Avastin and open myself up to hemorrhage issues 🙂 but I’m getting an MRI brain Sunday (which is before I could start Avastin) so we’ll see what’s going on in the old noggin.
Thanks again for all your input!
JudiAUParticipantHard tapers off dex are HARD. I was on 40 mg and tapered in a month (long story) and went into sepsis and lost a toe nail. This was with my (unrelated) brain tumor.
- September 17, 2021 at 1:47 pm
There are a lot of disagreements about how steroids can be used with immunotherapy. I was on 20 mg of hydrocortisone for most of my immunotherapy. I started after wild fevers after two rounds of immunotherapy. I started steroids, took a break from immunotherapy to have a large brain met resected and then radiated, and then within weeks returned to immunotherapy.
Have you considered getting a third consult with a melanoma specialist?
(FYI brain has been tumor free ever since)
I can’t get into my company melanoma onc until end October but I actually have an appointment with MD Anderson at the end of this month with their melanoma person. They won’t do evistis with my state so I have to go in person. I suppose I could try to get in before next Friday with them and see what they say….
- September 17, 2021 at 2:42 pm
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