Today was a big day. Potentially, a good day.
I don't want to bury the headline, so here it is: I am very likely going to get the opportunity to be a guinea pig...and that is a good thing! The melanoma specialist (who we will call "guru oncologist" moving forward) at UCSF thinks that I am a great candidate for a clinical trial that essentially involves taking two of the most effective treatments for this disease at the same time (which, thus far, are showing to be more effective when administered together).
Here are the basics:
Ipilimumab is the first drug that was shown to be effective in combating melanoma. It has been used since 2010.
Nivolumab is another immunotherapy drug that, since 2014, has also been approved by the FDA for use after the aforementioned drug had been tried on a patient (and as I understand it, typically for patients with the BRAF 6 mutation, which I don't have).
This clinical trial I will/should be participating in (I still need to be formally accepted as a patient into the trial, but at the moment that doesn't seem to be a big concern), basically involves giving me both of these drugs at the same time. They call this "Ipinivo" for short. Look at me, already catching on to the cancer lingo.
The reason this is a clinical trial despite the fact that both drugs have been approved by the FDA for some time, is that the FDA has not yet approved the use of the two in conjunction with each other. The good news for the many metastatic melanoma patients out there is that FDA approval for this is expected soon, quite possibly by the end of the year.
For an easy to understand explanation of this, and other current melanoma treatment and research, check out this website. We've found it to be one of the easiest to digest and we're (relatively) sure it's reputable (#ResponsibleBlogging).
The treatments will be every three weeks for the first 12 weeks, and every two weeks after that (I think during the later part of the trial only Nivolumab is piped into the system). My treatments will be at UCSF with check-ups during the intervening weeks in Santa Cruz with the OG oncologist.
The big downside to this treatment option is that the side effects of both drugs can be more pronounced and are more common in more patients. These side effects can include colitis (I leave you to google that, it does not sound pleasant and can be very serious), pancreatitis, skin irritation, loss of ability to produce hormones (meaning the need for hormone replacement), and a couple of others. The good news is that I will not lose my hair. I know, such a strange thing to worry about when you have cancer, but if I am being honest, it matters to me.
For those of you who have been following along you may also be wondering what this means for my brain and my liver. If you are new this party, more information about these two issues is included in previous posts if you are interested.
My liver does remain a bit of an outstanding question. My recent blood tests show that it's functioning well. That is good not just for medical reasons, but it will also silence those of you joking about the impact of my previous wine consumption on this particular organ. As an aside, I am, and will remain, totally off the sauce for the foreseeable future. Sad truth, especially for the wine industry.
But I digress. The guru oncologist said he wants to look at my scans and blood work again and will consult with other doctors at UCSF about my liver, which he will do this Friday at something called the "tumor board." Yes, that is a real thing where the guru oncologist and his peers meet together to discuss cases and collaborate. He seemed to think we'd be able to move forward without doing anything specific treatment for my liver. But, if we need to do something he thinks we might be able to do targeted chemotherapy that would be injected right into the tumors.
With respect to my brain tumor, I have a choice between two treatment paths. I can either hold off on radiation for the moment and get started on the melanoma treatment quickly (i.e., next week). They have had some success with brain tumors shrinking as a result of the Ipinivo treatment. If it doesn't work for me, zapping my brain still remains an option down the line. This is important to me. As you can imagine I am a little uptight about having any tumor, no matter the size, anywhere, in my brain. Alternatively, I can have the radiation treatment next week as originally planned, but this would delay the melanoma treatment by three(ish) weeks.
My gut tells me to go the first route. Erick's gut says the same. OG oncologist agrees and guru oncologist was encouraging us in the same direction. So pretty much, with that level of agreement, it's settled -- especially since the brain tumor isn't impacting me in any way at the moment.
To say that I am excited to have this clinical trial be a viable treatment option is an understatement. I had heard about this trial through my ever-expanding network of melanoma survivors and through my own research and was hoping it would be on the table. Based on what I have read and heard, it sounds promising. Yes, please make me a guinea pig!