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August 28, 2013 at 3:03 pm #21550
We have been struggling with our oncologists to try to get them to treat my wife with ipilimumab. She was 8 months on vemurafenib, progress, then received two doses of dacarbazine, then brain mets discovered (3 larger up to 3c, 12 smaller). Switched to temozolamide and started WBR.
Our oncologists are reluctant to treat her with ipilimumab after WBR since her progress with brain mets was fast (clean CT last of June, 15mets in mid August) and because she is positive for BRAF mutation, but as far as I did my homework, there’s more data and support to try to treat her with ipi even with brain mets and even with BRAF positive status – as long as the disese does not progress too quickly:
Given her history of treatments she is currently not eligible for PD-1 trials, because she needs to fail ipi first (at least after having received two doses) and stabilize her brain mets. Not even try to give her ipi would close so many doors for us.
I would appreciate your thoughts and experiences.August 28, 2013 at 4:32 pm #62368erinmay22Participant
I’m surprised they won’t do ipi? when I started Z last year the plan after 4/5 months was to switch to ipi anyway. It couldn’t hurt, right? It has been shown to penetrate the brain/blood barrier and show improvement for patients with brain mets.
There are clinical trials right now testing ipi and pd1 (and some of those patients have brain mets… that were stable for them to get in to the trial).
Maybe you need a 2nd opinion? Is there another hospital you can go to?
Best of luck!
ErinAugust 28, 2013 at 5:17 pm #62369BiljanaParticipant
Sorry to hear news about your wife, Andy. Her story reminds me of my own. I had just 3 months on Zelboraf and now progressing again. About your question, I also think you should try with IPI and do it as soon as you can. We will do the same. My doctor in Turkey suggested to start with combination of Temodal and Yervoy (chemo will give us some time so Yervoy could ‘kick in’). If I were you, I would insist on Ipi, change hospital and doctor if you have to. I also read that Ipi can be effective on stabilizing brain mets as well.
Let us know and good luck,
BiljanaAugust 28, 2013 at 6:17 pm #62370DonnaKParticipant
Hi Andy, My husband has innumerable rapidly growing brain mets and his oncologist (at Sloan Kettering) recommended WBR in combination with IPI. I thought the general idea is that after WBR, you have a window for IPI to work since the WBR should stabilize the brain mets. In my husbands case, something with the combination of WBR/IPI didn’t work for him, and he had to switch to dabrafinib, as he was progressing rapidly. However, it is entirely doable! As someone else mentioned though, if you have the chance to enter into a PD1/Ipi trial, I would jump on that opportunity. PD1 should work much faster htan the Ipi…
Best of luck!
DonnaAugust 29, 2013 at 8:09 am #62371
Thank you all for your replies
Donna, I wish all the best to your husband, he is lucky to have you.
Dear Biljana, I am really sorry about zelboraf,we are relly in somewhat similar situation. We will definitely insist on yervoy and also switch hospital if necessary – which is not an easy desicion coming from a small country with one oncological centre.Temodal any yervoy also sound as an interesting option – as you said for chemo to give us some time so Yervoy could ‘kick in’. Has anyone alse had this treatment, any experiences? Biljana, you will understand that (sorry pepole, a bit of local language):
Ne daj se, idemo napred Siguran sam, da si veoma snažna osoba (več po tome, da sama čitaš sve te stvari, koje uopšte nisu jednostavne). Možemo mi to:)
Dear Erin, I am so happy to see you reply:) You may not know it, but you are like a web star:) So many people read your blog, including me of course, follow you battle and wish you all the best. You are a source of inspiration and hope for so many!
Any yes I got second opinons, including one form MSKCC, both propose yervoy as long as we achive some stability so it can kick in. If only our doctors could have the….guts. There’s no hope of PD-1 trials unless we at least try yervoy.August 29, 2013 at 9:09 am #62372BiljanaParticipant
Hvala Andy .
About temodal+yervoy; I’m being treated in biggest Turkish oncology center and my doctor had few patients treated with this combination. According to him, it gives good results, but it is too early to make some general conclusion. I know Temodal’s statistics are not so great, but I used that drug for one year and it held my ,multiple liver metastases under control with minimal side effects, so I wouldn’t rule it out so easy. Plus, it passes blood brain barrier, so it can be helpful with brain mets as well.
Next week we’ll see doctor and make a plan, I will let you know about doses they will use.
BiljanaAugust 30, 2013 at 1:39 pm #62373
I just came accross this excellent article:
The Society for Immunotherapy of Cancer consensus statement on tumour immunotherapy for the treatment of cutaneous melanomaAugust 30, 2013 at 6:39 pm #62374erinmay22Participant
Andy – glad to hear you got some other opinions. Yes, stability is helpful since Ipi can take awhile to kick in. at my 12 week scans I was still having growth. 4 weeks later when they scanned me to get in to the pd1 trial, shrinkage! At that point I knew it because the pain in my abdomine was slowly going away and I could eat again!
And thanks! always nice to hear folks check out my blog! Hopefully it helps!
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