Update, Switching from Ipi/Nivo to BRAF/Mek advice please

Hey Zoe, sorry to hear the ipi/nivo combo isn't working for your husband yet! My husband and I were faced with the same problem last April except we're in BC. He was on ipi/nivo for about a week before our oncologist decided his cancer was just progressing way too fast and he had to switch to Taf/Mek instead. Like in your situation, this meant that we had to give up ipi/nivo altogether since there was no funding for my husband to go back on ipi/nivo once Taf/Mek failed.

In my husband's case we really had no choice because the cancer was just going totally bonkers — couldn't breathe and required home oxygen, was unable to walk, stopped eating for a few days, etc. Taf/Mek saved my husband's life! It was really miraculous. Within 2 weeks he was completely off home oxygen and able to walk around again. Life almost went back to normal for a little while.

In your case, it sounds like your husband is still doing (relatively) okay and could afford to do one more treatment and see if that does the trick. So I'm not totally sure what you should decide to do.

I will say that some people on this board have found really good responses to the BRAF inhibitors, some for many years! So that is possible. But it's probably true that most people don't enjoy those long responses. My husband's response to Taf/Mek only lasted 3 months.

However, there might be other options if/when Taf/Mek fails for your husband. At least in BC, my husband was able to go on pembrolizumab (Keytruda) after Taf/Mek. The province is covering his pembro treatments. I'm not sure if this is an option in Ontario? But you might be able to ask your oncologist about that. Pembrolizumab is similar to nivolumab.

My husband and I have also decided to privately pay for low-dose ipilimumab, so between that and the province-covered pembro that's something like the ipi/nivo combo (except a little easier in terms of side effects, since he only takes 1/3rd of the ipi). This is very expensive and I know we're really lucky to have the family support and resources to help us do this. But if that's at all an option for you, if Ontario can pay for pembro and you can cover the ipi, then that's basically going back on the combo again afterwards.

There is not as much research on the ipi/pembro combo as there is on ipi/nivo, but our oncologist was supportive because a) pembro works like nivo, and there is lots of research about ipi/nivo, and b) my husband is going on a lower dose of ipi than what people get with ipi/nivo, so side effects should not be as bad as with ipi/nivo. Also, she knows we are pretty desperate for more options for my husband.

At least, this is how we've been handling my husband's pretty similar situation here in BC. Good luck, I know these decisions are really hard.

Dear Zoe, we are absolutely in the same situation as you and your husband.
My father has two large tumors on his scar (tennis ball size) and many metastases balls arround. He took 4 rounds of keytruda (pembro) and we still don’t have any results. He is after radiotherapy now, in big pain. He is unable to walk, sit.. He can only lay.. We are hopeless, but we can see, that those two big tumors shrinked a little bit after radiotherapy and small metastases started to dry, some of them got black and fall down..
We asked our parents onkologist if keytruda won’t work, what will be next and he told us, there is nothing more to do.. You are verry happy to live in so developed country, full of possibilities…
We are going to ask our doctor to swich him to braf/mek, but what is the right decision ??
Nobody knows perfectly what will work for different person.
Our onkologist says that we have to wait until the sixth round of keytruda to see if it works..
I know some ppl, imunotherapy stared to work after high dose of radiotherapy and those big skin tumors disappeared.
I know some ppl who changed immunotherapy to targeted and their skin tumors disappeared very fast.. But they appeared again..
It depends..
Our case seems very poor, but there is something nobody can take us.. Its belief.. My dad is so strong and fights..however he is in horrible pain..

Wish you good luck.. You are not alone.. And there are many ppl who kicked this cancer’s butt..
Take care..
Veronika

Zoe, just to add a little bit more to what cjm22 and veronika have given you is the idea from the early days of immunotherapy trials. Dr. Weber who was one of the first oncologisit to treat melanoma patients with Ipi back around 2001 or 2002 always gives this piece of advice " you have to be patient with the patients" it takes time for immunotherapy to work for some patients. Stopping ipi+ nivo after 2 treatments doesn't make a lot of sense especially with the situation that you describe that it wouldn't be an option to go back to again after targeted therapy. Targeted therapy is a fantastic option but for the majority it won't be durable or long lasting because melanoma will mutate around it. Something to consider is the TIL's program at Princess Margaret in Toronto run by Dr. Marcus Butler. Here is a pretty good link on this topic.https://www.youtube.com/watch?v=fNa4YxIaEDs

Zoe – my husband has been on Braf(Tafinlar)  since 2013 with intial reduction in tumor size and several years of long term stability.  He did have two brain mets during this time.  In an attempt to get his brain to cooperate, his oncologist added Keytruda and now has no evidence of disease in his brain or body.  I hope this works for your husband.  Take care.

Ann

Hi Zoe – Hope this helps, not complicates!!

We are in ON and my sister (BRAF+) was treated at Juravinski in Hamilton and is still under care there with her onc. She is NED but when she finished treatment, we specifically asked what happens in the event of recurrence and her onc told us that all treatments would be available to her again, including Taf/Mek, which was a surprise because, though my sister responded to it really well, she developed a gr 3 allergic reaction and it had to be discontinued. That was under clinical trial.

She went on to ipi-nivo combo, also under clinical trial and had 2 treatments before the ipi caused eye damage (and brain mets were discovered and treated) – the immunotherapy continued but nivo-only for 24 infusions. At that point, the trial ended and though her onc told us my sister may not be allowed to continue treatments, she was looking for options. The nivo did continue, without any interruption and, ultimately, it was OHIP that paid for it.

And that's what we've been told – she will be allowed any treatment that is now approved in this province as a "main stream" or "first-line" treatment. She was an excellent responder (luckily) to every treatment … I don't know if that has a bearing on any treatment decisions >> I've tried to clarify a number of these types of questions in the past, to no avail.

Wishing you and your husband the best possible outcomes!!

Barb