The Dakotans

I went to Sioux Falls, South Dakota to meet with Dr. Brian Leyland-Jones of Avera Cancer Institute, who is a guru of combination therapy for cancer. The idea behind combination therapy, which is outlined in Dr. Vince DeVita’s outstanding book “The Death of Cancer” (people with cancer: READ THIS BOOK), is that cancer doesn’t just grow one way–it has LOTS of pathways it can take to grow, because cancer is smart as fuck. So if you block one pathway, it’s just going to use another pathway to grow. So, the idea behind combination therapy is to block multiple pathways, so the cancer can’t just get around the one drug you give it. Think of it as like you’ve got a serious bacterial infection and they give you a combination of antibiotics, like Augmentin, to make sure you really kill the bacteria and it’s not resistant to the one antibiotic you give it. Right now, the standard of care in metastatic cancer is to give one drug, then another, then another, then another, and eventually you run out of drugs and you die. This is why median survival is 33 months for metastatic breast cancer. Dr. Leyland-Jones and Dr. DeVita believe we can do better, and in fact, Dr. DeVita developed a protocol involving 4 different chemos all given at once to Hodkins patients. And guess what? Hodgkins went from a a death sentence to being frequently curable. Other doctors would say “Do your patients still speak to you after the hell you put them through?” And he says, “Yes, they send me pictures of their grandchildren 30 years later.”

So. I went to Sioux Falls for a consult, with the full blessing of #bestdocever to talk to Dr. Leyland-Jones about what combination therapy he’d recommend for me. As many of you know, I have a rare type of cancer: neuroendocrine breast cancer. Neuroendocrine tumors usually grow in the gut or the lungs–there’s only about 20 US cases of neuroendocrine breast cancer reported per year. The fascinating thing is, my cancer acts like neither a breast cancer nor a neuroendocrine cancer nor a neuroendocrine breast cancer. In fact, Dr. Leyland-Jones says my cancer is the most bizarre one he’s ever seen–there is literally no neuroendocrine breast cancer anywhere in the literature like mine. If you doubted that I’m a special snowflake, now there is scientific evidence that you’re wrong.

Before I went, I had both Foundation One and Guardant 360 testing. Foundation One tests a biopsy of an existing tumor (in my case, my liver) and Guardant tests your blood. Both of them showed that my cancer is heavily driven by a TP53 mutation–in fact, Dr. Leyland-Jones said he’d never seen such a high TP53 score before. (I am not just an oversharer, I’m an overachiever.) Currently there are drugs in trials for TP53, but nothing approved for any cancer type. In addition, I have a MEK amplification and an NF1 mutation.

The good news is, there are drugs for both MEK and for NF1. Those drugs are Cabozantinib and Trametinib. Cabo is approved for renal cell and medullary thyroid cancers. Tram is approved for melanoma. Neither is approved for breast or neuroendocrine cancers. They also recommended we pair those two drugs with Doxil (which is approved for breast cancer, it’s a chemo drug) and they think I will have good success on this cocktail.

Now here’s the problem. Since Cabo and Tram are not approved for my organ of origin, we’re going to have a hard time getting them approved by my insurance. We expect an initial denial and an appeal will have to happen. I have very good insurance but this is waaaaaaay outside the box so it’s entirely possible I won’t get approved for it. The next step after that would be to ask for the drug companies to offer it through their patient assistance programs. Those tend to have an income cap around $100,000, which means to qualify I’d likely have to legally divorce The Hubs, which comes with other consequences financially for us, not to mention WTF I love my husband and he loves me and we don’t want to get divorced WTF.

If we can’t get the drugs covered, the cost per month would be around $12,000. No I’m not making that up. In my 401K I have about $100,000, so that’d cover less than a year of treatment.

So. Now we start the process of trying to get access to the drugs. The patient advocate at Avera is a badass and when I told her I’m happy to do some social media shaming of whoever won’t pay for the drugs she said “I knew I was going to like you.” I’ll also be leveraging contacts at Novartis and anywhere else I have contacts. (Know anyone at Regence Blue Cross/Blue Shield here in WA? Because they’re the plan administrator for my insurance.) This will take several weeks at best. In the meantime, I’m staying on Cisplatin and Etoposide, the chemo cocktail that’s been fairly successful for me in the past and that I hope is doing some good work kicking butt for me right now.

I can’t say enough good things about the team at Avera. If you have MBC, GO SEE THEM. They have been running a trial for 2 1/2 years now in which they give as many patients as possible the full cocktail that their genomic testing suggests, and following patients who for whatever reason (health status, insurance fuckers) couldn’t get the full cocktail. These were heavily pretreated patients, on their 4th or 5th line of therapy. Of the patients that got the full cocktail, 2 1/2 years out, they’ve had a a 93% response rate (only 7% of patients progressed) and 30% are NED. Of the patients who didn’t get the full cocktail, all of them are dead. ALL OF THEM ARE DEAD. The other beauty of their approach is, you go see them for a consult, then your doc prescribes the cocktail, so you don’t have to go to Sioux Falls for treatment. You just need a doctor willing to think outside the box and prescribe something that isn’t remotely standard of care yet–knowing that, standard of care leads to 33 months median survival for us people with MBC.

Feel free to ask questions, I’m happy to answer them. And if you’d like me to hook you up with the Avera team, drop me a DM on Twitter and I’ll connect you.