My mum was diagnosed with stage IV melanoma, and she has growths on her lung, kidney, hip and on the outside of her spine. She’s BRAF positive and went on a combo of nivulomab and ipilumunab. After 3 months of treatment, she’s been scanned and she has new growths and a new legion. Our oncologist is now moving to targeted therapy. Does anybody have any experience or knowledge about these therapies, and potentially how good her chances are?
- November 26, 2021 at 11:52 am
Sorry you and your mom are dealing with this Stefan. She should respond well since she is BRAF positive. The only problem with targeted therapy is that the results are sometimes not durable – though there are folks who are maintained on them for years and years!!!! Sometimes, once targeted therapy has decreased the tumor burden, the patient switches back to immunotherapy to maintain those results and gain the desired durability as immunotherapy works best with a minimal tumor burden. Here is a primer I put together regarding current melanoma treatments that you may find helpful: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html
- November 26, 2021 at 4:04 pm
I wish you and your mom my best. Celeste
Wish you all the best, if you don’t mind me asking, how many tumour sites you have? Also how long have you been on the combo for now? It’s so nerve racking, everybody is touting immunotherapy and I’m beyond disappointed it didn’t work for her. Once again wish you all the best.
- November 27, 2021 at 3:28 am
Thank you so much Celeste, I see you on this forum responding to people on this platform all the time and you’re a real beacon of hope. My mum has just under three treatments with ipi and nuvo, she was having awful back pain which we thought was a consequence of the therapy but turns out it was a new tumour. When she went into the scan they found a fourth tumour there, however they only scanned her spine, so god knows how many there are all over the body. The consultation we had with the doctor after that was brief and abrupt – that it wasn’t working and that we’re going to switch. She didn’t mention switching back to immunotherapy, so that might be something I might bring up next time, and if you have any info on that it would be very appreciated. I’ve read some research that has correlated low tumour burden with high long-term targeted therapy response, and with the number of tumours she has, I’m deeply concerned. Unfortunately, I’m starting to believe the prognosis isn’t good, and that in the long term she might not make it.
- November 27, 2021 at 3:37 am
I would appreciate any info you have
thank you so much
First of all, Stefan – your doc should answer ALL you and your mom’s questions. They should also be a melanoma specialist or at least someone who has treated lots of melanoma patients. If you need to, you can always try to switch docs or seek a second opinion. That said – here are some points I think are important ~
- November 28, 2021 at 9:48 am
- We figured out that immunotherapy takes time to work and works best with a low tumor burden some time ago and is now pretty much accepted as fact.
- Same with the fact that while most BRAF positive patients have a rapid and sometimes complete response to targeted therapy, the effect is often short lived due to tumor work around and ways to avoid that must be utilized. Like: Switching to immunotherapy after tumor burden is decreased. Using an alternate dosing schedule (something along the lines of taking the med 2 days on and one day off, etc.)
- We know that targeted therapy works best if it is a BRAF/MEK combo. Here is a basic review about targeted therapy: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html
- There are several BRAF/MEK drugs – ie combos. Here are some reports about that: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=binimetinib
- Some patients are treated with targeted and immunotherapy COMBINED. Side effects can be tricky, but here are some reports: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=combining+targeted+and+immunotherapy
- Radiation is another option. It is not just for brain mets. We have learned that in addition to shrinking tumors and often decreasing pain, combining radiation with systemic therapy (targeted or immunotherapy) can provide greater response than any of the treatments alone. Just put radiation in the search bubble of my blog if interested in reports.
- Ditto for surgery. Surgery is unfun, but sometimes can provide relief and immediately decreased tumor burden. Lots of reports re surgery via the search bubble as well.
- Further there are more treatments available via clinical trials. See the list I put up in the thread below – “Success on Temodar”.
Your mother is facing a tough road, no doubt. But there are options and there is hope. Sadly, she will likely need your help in fighting for the access she deserves. She is lucky to have you in her corner helping her with that. Hang in there. Ask more questions as you have the need.
gopher38ParticipantI’m currently doing dabrafenib/tram. A little nerve-wracking because you’re a little bit waiting for the next shoe to drop … but grateful to have it as an option. I started with a similar-but-different combo called vemurabenib/cobi-something, which – unfortunately – put me in the hospital, so now I’m on dab/tram, which is working OK for the moment, and doesn’t have the same negative effect on me. Good luck. Warren
- November 26, 2021 at 7:16 pm
- November 28, 2021 at 12:30 am
I am only replying since no one else did to your last message – but essentially Celeste’s message and summary of treatment is the best information. We all want immunotherapy to work (and it is amazing if it does) but for some of us it does not – which is probably bad news – but in your mother;s case you can use targetted therapy as a back-up and that’s what your oncologist is doing. My understanding is that these targeted therapies are generally very effective (some people have side effects so be careful) but that as Celeste mentions, they tend not to be long lasting – they buy time and bring the tumour burden down. So maybe then immunotherapy can work. And in some cases targeted therapy turns out to be durable.
So this approach would seem to make lots of sense – let’s hope it works and that you can work with your oncologist on the next steps after that
I hope your mother will be OK
best wishes Mark
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