They Can’t Handle the Truth

So, you all know that I’m a co-founder of METUP, and I’m proud of the work they do. I’ve stepped away from active leadership in the group because of treatment, and the current leadership is a group that is incredibly capable and dedicated. But despite stepping away a bit, I remain deeply committed to METUP and its mission: changing the landscape of metastatic cancer through direct action.

What does that mean, direct action? Well, sometimes it’s having a die-in next to the Liberty Bell on Congress’s doorstep. Other times, it’s holding signs in front of a breast cancer symposium remind researchers that we’re not dead yet. And, it’s also going to social media to complain when someone who’s supposed to be helping cancer patients is doing the opposite, and demand that they start doing right by us.

That doesn’t always make us friends. When we point out that Komen spends a tiny portion of their budget on research and a huge portion of their budget on “public health education” that includes $40 million in marketing, does that make Komen happy? I doubt it. But it’s the truth, and it’s a reason why MBC continues to kill 40,000 Americans every year. When we point out that Novartis made $11 billion in profits last year and charges exorbitant prices for cancer drugs, does that make Novartis happy? My guess is no. But it’s the truth, and it’s a reason why people die of financial toxicity.

I don’t think any lives are saved when patient activists won’t talk about these issues. And literally the only goal of my advocacy is to save lives. And if it’s not another organization’s goal, well, then I think they’re part of the problem and not the solution. So METUP and I and other patients will continue to call out bullshit when we see it.

Which brings me to what’s been going on for the last year, and how it’s recently turned out. I want to take a moment to say that what I’m saying now, I’m not saying on behalf of METUP. I’m saying it in my own voice and I’m expressing my own opinion and it’ll come with a hell of a lot of swearing, because I’m mad as fuck. So, don’t read this blog post as commentary from METUP. It’s commentary from me.

Jennie Grimes and other METUP members and I decided it would be a good idea for METUP to apply for membership in the Metastatic Breast Cancer Alliance back in February 2015. We were encouraged to apply by the head of one of the member organizations, and we thought we could bring an important voice to the Alliance that we felt wasn’t strong enough: the voice of patients. There are very few patient members of the Alliance; Metastatic Breast Cancer Network is a member, and a few of the other members have metastatic patients as their representative to the Alliance. But at the Alliance meeting I attended in December 2015, the patient voice was noticeably absent from the room–especially patients whose health was unstable. In addition, we felt we could bring our strength in lobbying and policy work to the Alliance, which doesn’t have any member organizations with lobbying experience, beyond what Pharma does.

So, we filled out the application, and about a month later, Jennie and I had a conversation with two members of the executive board. They discussed our application and we discussed METUP’s mission and advocacy strategy, including our commitment to demanding change when we see a problem that’s harming people with cancer. We committed to never criticizing the work of the Alliance publicly, but we made it clear we would continue to criticize the actions of the member organizations when we felt we needed to do so. The two executive board members said they would discuss our application with the rest of the board, and let us know within a few weeks whether our application had been accepted.

The following month, April, was the Living Beyond Breast Cancer MBC patient conference (an event I always encourage patients to attend if they’re able!), and several of the Alliance’s member organizations were there. A representative of one of the organizations came up to me and begged me not to let METUP join the Alliance. Through tears, this person said “I’m afraid if you join, they’ll try to silence you, and we need your voice.” I said that if that happened, we’d just quit the Alliance, and the person said, “But that would destroy the Alliance’s image in the mets community. People look up to you and Jennie, you’re rock stars to the community, and if you leave, people will think the Alliance isn’t doing good work, and it is.” I told the person I’d think about it.

And I did, and I discussed it with the rest of the METUP leadership, and we decided not to withdraw our application. We still felt that the Alliance needed a stronger patient voice at its table, and we still wanted to see the Alliance begin to lobby and advocate for policy changes. So, we patiently waited for a response to our application. And we heard nothing.

June brought the ASCO Annual Meeting in Chicago, and with it the many patient advocates who attend. Jennie and I sat down with the person who initially encouraged us to join the Alliance to find out what the holdup was. This person said, “Oh, does METUP still want to join? We weren’t sure you did.” WHAT THE FUCK. Jennie assured the person that we did, and said “METUP has clearly done its due diligence. When are you going to give us an answer on our application?” The person assured us that we’d hear within a few weeks.

For the next several months, we repeatedly emailed this person asking when we could expect a response on our application, with no response. Finally I got fed up and contacted Marc Hurlburt, head of the Alliance, to find out when we would get a response on our application. He said he was on his way to to Europe for a major cancer conference, but would call me the following week after he’d had a chance to speak with some members of their executive board members and find out what was holding up our application. I thanked him. And never heard from him again.

Meanwhile, we watched quite a few other organizations gain membership in the Alliance. Tigerlily Foundation, Male Breast Cancer Coalition, The Cancer Couch Foundation…but nothing about METUP. 

Finally, our new president, April Knowles, took over the duty of trying to find out if we were ever going to receive a response to our application. She spoke with Alliance members at the San Antonio Breast Cancer Symposium, but still didn’t receive a final decision until this month: the answer was no. After dragging out a decision on our application for a year, after promising repeatedly to give us a response soon, after we met all the requirements of membership, they rejected the only metastatic patient advocacy group engaged in direct action. 

And, did they give us a letter explaining their decision? No. Did they apologize for the incredibly unprofessional way they’d treated us by failing to decide on our application for over a year? No. Did they promise to ensure patients in active treatment will be represented in the Alliance in other ways? No. Instead, they decided that saving their precious egos from criticism when they do shitty work is more important that actually listening to people with metastatic breast cancer. They decided that hoarding their own power is more important that collaborating with the people they claim they’re helping.

Why would they make this choice? Well, my belief is that it’s because their pharma overlords were uncomfortable listening to the truths about their industry. Since pharma pays for all the Alliance’s work, it’s unsurprising that the Alliance hasn’t done anything to increase research into metastasis, to reduce exorbitant drug prices, or to improve compassionate use access for the many patients who don’t qualify for clinical trials. 

Instead, since the landscape analysis that came out over 2 years ago, they’ve worked on a lame public awareness campaign–because awareness sure has done a lot to save breast cancer lives for the last 30 years–and a patient information brochure with information that was already available from dozens of breast cancer organizations, including several of the Alliance members. If we were in the room, there’s no way we would have said, “Sure, an awareness campaign is a great idea and I’m sure it’ll save a lot of lives. Also, redo all the work that already exists on patient information because that’s a great use of your time.”

When we applied, Jennie and I knew we had a LOT more to offer the Alliance than they had to offer us. We already work with and have good relationships with respected breast cancer organizations like Metavivor and The Cancer Couch Foundation and Living Beyond Breast Cancer and Tigerlily Foundation. We don’t need the Alliance for networking because we do that ourselves. We also don’t take pharma money, so we didn’t need a connection to them to ask for funding. No, what we had to offer was much more valuable than what we would have gotten from them. We would have brought them instant street cred with the metastatic community, been able to help them lobby government, and given them a solid understanding of the real needs of people with MBC.

The Alliance members rejected all that in exchange for making sure nobody hurts their feelings.

You know, the thing that pisses me off the most in the world of cancer is that too few people keep their eyes on the prize: saving lives. There is nothing more important than saving lives. No ego, no money, no fame, no power is more important than a single human life. And if you have money and power and you spend it making yourself look good instead of trying to save lives, you are immoral. Period. We don’t have time for infighting and keeping our mouths shut so no one’s feelings are hurt. PEOPLE ARE DYING. WE ARE DYING.

So, fuck you, Metastatic Breast Cancer Alliance. We see you for what you are now: an organization that refuses to listen to patients and only cares about its own self-aggrandizement. I sincerely hope your member organizations who AREN’T more concerned with their own power than they are about saving lives will speak out about the way the Alliance has treated METUP, and demand that the Alliance do better in the future. Because, METUP stands ready to work with any organization that genuinely wants to save lives. 

Combination Therapy update: Progression

Well, I really hoped this wouldn’t be the case, but the combo therapy failed me. Although my brain has remained stable (which is no mean feat), I’m having lots of progression in bone, and some in liver and lymph nodes. I’m pretty disappointed and so is #BestDocEver–we both had high hopes for this treatment, and given the long list of side effects I’ve had on it, it’s a blow to realize that I put up with all that with no benefit.

What’s come out of this for #BestDocEver and me is a belief that traditional breast cancer drugs will never work on my bizarre rare neuroendocrine breast cancer. Literally every breast cancer drug I’ve been on has failed me, and the only ones that have given me any benefit are ones used on neuroendocrine cancers. So, we’re done with treating my cancer with breast cancer drugs. From now on, I am a neuroendocrine cancer patient.

Since my genomic testing showed that crazy high TP53 mutational burden, we’re hoping to find me an experimental TP53 drug, either via a clinical trial or compassionate use. That’s going to take time, so in the meantime I’ll be starting on carboplatin with irinotecan, a neuroendocrine chemo combo. Whatever the side effects of it are, it can’t possibly be as bad as the combo therapy was. 

Of course, there’s always a monkey wrench in the works, and in my case, it’s the flu. Because of course that’s what I need right now, influenza, amiright? It’s kicking my butt. I’m tired as hell and I have horrible coughing fits. So, we’ve had to postpone the start of the new chemo until next week. Everyone keep your fingers crossed that it goes away quickly!

I also want to say this: even though this combo didn’t work for me, I still believe that genomically-driven combination therapy is the future of cancer treatment. I’m still encouraging patients to get genomic testing, and to reach out to the folks at Avera about trying a combination therapy. Don’t let one failed treatment scare you off–remember how bizarre my cancer is, and how difficult to treat it’s been all along.

So, that’s the news. The little bit of hair I’ve got is going to fall out again soon, and if carbo does what it did in 2015, I’ll probably need a few blood transfusions.  But hopefully it’ll keep things in check until I can get my hands on something better. That’s always the goal, right? Stay alive until you something better comes along.

How’s combination therapy going, you ask?

Well then, let me give you an update! I started the full combination of drugs recommended by The Dakotans on November 30. I was two weeks into my Doxil cycle, and my CEA (a tumor marker that has been tracking my disease pretty well for the last year) was 49, close to my high for the year. Two weeks later, my CEA was down to 39. That’s pretty fantastic for a span of just 2 weeks! I’m really hoping scans next month will show some improvement.

Now the downside: side effects, because every treatment has them. Mine have been kinda weird. Since starting on the Doxil, my hands have been shakey, and before we added Avastin and Mekinist, I got a wicked case of thrush, and started to get a bit fatigued. Luckily Nystatin helped with the thrush because THAT shit was AWFUL. It hurt to swallow anything at all–water, ice cream, yogurt, anything. Horrible. I’ve also noticed that I get really cold the first week or so of Doxil. Like, I need a hat and a big sweatshirt and some blankets all at once. 

Since adding the Avastin and Mekinist, I’ve been having a lot of lightheadedness and dizzy spells, and I’m hypotensive (that means low blood pressure, for those not savvy with the medical jargon). Despite drinking a ton and having IV fluids twice in two weeks, and having all my blood work (including potassium) come back normal, I just seem to have a lot of symptoms of dehydration, not just the lightheadedness. Like, everything about me seems dry–my skin, my mouth, my nostrils, my lips, my eyes…I’m just dry as a bone. So, I’m using eye drops, lotion, and lip balm all the time. A friend suggested I get more fat in my diet to help combat the dryness, and I may try that too.

I’m also pretty fatigued. What started as minor fatigue on Doxil has gotten worse. It’s still not cisplatin/etoposide bad, but I’m only going out when it’s something important, like the electoral college ceremony yesterday. (Yes, I’m a presidential elector, in a blue state, and I voted for Hillary. You may have seen a clip of me on Good Morning America reading off the vote totals for our state.) Like, if it’s something I can do from home, I’m doing it from home, usually in bed, under a blanket.

So. Not insignificant side effects, for sure. But, given the drop in tumor markers, I mean, it seems to be well worth it so far. The scans will tell, though. If they show progression, obviously we’ll have to find a new treatment. If not, we’ll stay the course. And, of course, I’ll keep you all posted!

Denial, Part 3: VICTORY!

When last I spoke to you all, my insurance had denied me approval for my combination therapy. Let me take in the way-back machine before I bring you up to date.

Back in June, I attend the American Society of Clinical Oncology Annual Meeting, aka ASCO. While there, I went to the Novartis booth to ask a question about Affinitor, which I was taking at the time. But nobody at the booth could answer my question, because I wasn’t a doctor. This has to do with FDA rules about pharma providing information to patients that might be medical advice, but it was still pretty frustrating that they hadn’t sent anyone who COULD speak to patient advocates. So, I tweeted about it, with a picture of me in front of their booth.

Novartis immediately responded to my tweet asking me to email them so they could talk to me about it. And their director of patient advocacy called me, and apologized that they hadn’t had anyone there who could speak to me about their drug. She said they’d never had a patient advocate come up their booth at ASCO before, so they hadn’t thought to have someone there could answer patient questions. And she assured me that they were rethinking this now that more patient advocates are coming to medical conferences. It was nice that my tweet resulted in such an immediate response.

Fast forward to my struggle to get my drugs…the fabulous patient advocate at Avera, who deserves a Nobel prize of some sort, helped me file for patient assistance through Genentech, maker of Avastin, and Novartis, maker of Mekinist. She filed the paperwork on a Friday, and on Monday I got a call from Genentech. They spoke to me for about 2 minutes confirming basic information about me, and then said “You’re approved. We’ll send the drug to your oncologist’s office.” I was elated to say the least! 

Then came Tuesday evening. I got a text from #bestdocever saying Novartis had turned me down for patient assistance, because we were above their income cap. This is exactly what I had feared would happen. I started tweeting about it and googling similar drugs to see if maybe there was a different drug we could try to get access to. The Hubs and I started talking about getting legally divorced so I’d fall under the income cap. I slept poorly that night.

Wednesday morning I woke up ready to fight, and I began tweeting again and mentioned that I was filing an appeal of Novartis’s denial decision, as did several of my friends and followers. Two hours later, I got a call from that nice director of patient advocacy who had reached out to me in June. She said she saw I was appeal and she was so glad that I was, and that a whole team of people was going to work on my appeal to expedite it, and she wanted me to know that they were going to work hard on it. I reiterated my frustration that if I divorced my husband, I’d qualify under their income caps, and she said that they certainly don’t want to put anyone through that. I thanked them for expediting my appeal and for reaching out. 

But I kept up the tweeting, because clearly it was having an effect. I mentioned that Novartis made $17 BILLION in profits last year. I explained that their drug is $6,000 a month, which is three times our mortgage. I talked about not wanting to divorce the husband I love. I said I wasn’t ready to die.

At 2:30, we sent in my appeal paperwork. And at 3:30, I got the call from Novartis that my appeal had been granted and I was approved to receive Mekinist. I declared victory on Twitter and thanked Novartis for granting me my drugs. It was a fantastic way to start the Thanksgiving weekend.

What have I learned from all this? Well, insurance companies don’t seem to give a shit about horrible things people say about them on social media. They completely ignored everything we tweeted or posted on their Facebook page. But pharma companies DO seem to care about negative publicity. And pointing out the profits they make and the cost of their drugs, and the crazy things that patients have to go through to qualify for support, seems to motivate them to do the right thing.

I plan to use what I’ve learned to help as many patients as I can get access to the drugs they need to keep them alive. If you or someone you know is having trouble getting access to drugs, please contact me. I intend to use my social media platform and my contacts in whatever way I can to help patients get the drugs they need. That includes holding insurance and pharmaceutical companies to account for their actions–for high drug prices, for bureaucratic hassles, for decisions based on profits and not patient lives. In fact, right now my friend Champagne Joy is waging her own campaign to get her combination therapy drugs. Her insurance company, Cigna, which made $2.3 BILLION in profits last year, is refusing to cover her drugs. You can help her out by tweeting about it, using the hashtag #SaveChampagne.

This battle has been won, but there are more battles to be fought, and I won’t stop fighting until all patients can access the drugs that they need.

Denial, Part 2

If you’ve been following me on Twitter, then you’ll know already that the Blue Cross Blue Shield Federal Employee Program denied my appeal of their denial of my combination therapy. Again the reason for the denial is that in metastatic breast cancer, these drugs aren’t standard of care, so they consider them “investigational/experimental.”

Here’s where the problem lies: I don’t have regular breast cancer. I have neuroendocrine breast cancer. Neuroendocrine breast cancer is very rare–about 20 reported cases per year in the US–and there is no diagnostic code for it in the insurance billing systems. There is no standard of care for neuroendocrine breast cancer because it’s so rare. Let me say that again, because this is important: there is no standard of care for my rare cancer. Literally every treatment for it is investigational/experimental.

My cancer didn’t respond to any of the standard treatments for regular ER/PR+ breast cancer, not one of them. The only thing it’s responded to is chemo and even then, it’s been hit and miss. Now we have genomic testing that shows that I have genetic mutations (NF1, BRAF, MET) that have drugs to match them, drugs that have a chance of effectively targeting my cancer and keeping it from killing me so quickly.

But because my rare cancer doesn’t have a code in the insurance billing system, because it’s coded as just breast cancer, my insurance company has refused to pay for the drugs, calling them investigational/experimental and not standard of care. Which is exactly what every other treatment for my cancer is: investigational/experimental and not standard of care.

So basically, my claim has been murdered by bureaucratic crap. The only thing I can do at this point is appeal to the US Office of Personnel Management (because it’s a federal employee plan) and ask them to overturn the denial. This would require a hearing, which means I’d need a lawyer. And in the meantime, I still don’t have the drugs.

This brings us to our current efforts to get me these drugs: applying for patient support programs with the drug manufacturers, Novartis and Genentech. The patient advocate at Avera Cancer Institute has helped me apply for both. Now, Genentech (maker of Avastin) has a pretty good program and we’re hoping to qualify under their income cap after they consider things like child care costs and medical expenses. Novartis (maker of Mekinist) has a lower income cap than Genentech and I’m not sure I’ll qualify without divorcing the husband I love so that I become, on paper, a single mom of two kids living on my disability pension and SSI. 

On top of the obvious emotional nature of getting a divorce when you’re happily married just to try to stay alive, a divorce would cause financial upheaval for us–my husband is currently on my insurance plan, so he would have to get new insurance through his workplace, whose plans aren’t as good as mine, and this would be an added cost for our family. In addition, his survivor benefits upon my death will be impacted unless we carefully word our divorce decree. Again, we’d need a lawyer to handle all this for us, which is another cost. And a divorce takes time; you can’t just go to court tomorrow and walk out of there divorced. Time is not something that I can waste.

So, if Novartis doesn’t approve us under the program, we’re also considering buying drugs in Canada. I haven’t researched any of this yet but old folks have been doing it for years, so why not me? We’re only 2 hours from the border. Or, maybe we do a GoFundMe, because in 2016 that’s how we’re all financing our healthcare apparently.

There’s a question that needs asking: why are these drugs so expensive? Genentech’s parent company, Roche, had a net income of about $9 billion last year. Novartis’s net income in 2015 was $17 billion, up $7 billion over over its 2014 figures. Meanwhile, patients are dying because they can’t access these companies’ drugs without bankrupting their families. Or divorcing the husband they love.

As I’ve said, I’m still hopeful that Genentech and Novartis will come through for us without putting us through a divorce we don’t want. And above all, I want to express how grateful to everyone, from the folks messaging me and tweeting at me with words of support, to the amazing patient advocate at Avera, to my team of doctors. All of this effort to try to save my life leaves me speechless. There aren’t words to describe what you all mean to me.

I promise to keep you all posted about how everything goes down. I’m hoping to have a quick response from Novartis and Genentech and I’ll be sure to let you know when I hear from them. Until then, keep tweeting encouraging notes to both companies, using the #SaveBeth hashtag. We need them on my side right now. Be kind to them, and hopefully they’ll be kind to me!

Denial

My insurance company, the federal employee Blue Cross Blue Shielf plan aka FEP Blue, denied the drugs for my combination therapy. They’ll pay for doxil without even a preauthorization necessary, but they denied authorization for both of the immunotherapy drugs. We went with Avastin over the cabozatinib hoping they’d approve it, but they didn’t. 

So, now we appeal. It took a week for FEP Blue to send me the denial letter for the trametinib, and because it’s an oral drug, I have to be the one to file the appeal, so we couldn’t get started on that process until this week. The Avastin appeal has to be filed by #bestdocever and he didn’t get the denial until this week either. Because it’s not like it’s important to get this information quickly when the patient has terminal cancer.

I’m very grateful to have the team at Avera in my corner right now. Their patient advocate has written tons of these appeal letters, so she’s helping out with the appeal process. She’s also appling to Genentech (maker of Avastin) and Novartis (maker of trametinib) on my behalf to seek support via their patient assistance programs. I’m hopeful we’ll be able to get them to help without me going through the charade of legally divorcing my husband so I fit under their income caps.

Here’s the thing. When I look at the data on this treatment approach, and I see that the 30% of patients who couldn’t get combination therapy are all dead, and that 93% of the patients who got combination therapy are alive? Yeah, I don’t just see numbers. I see people. I see my friends. I see Michelle and Jill and Holley and Carolyn and Sarita and Adrian and Ishuan and Jean and Vickie and Jody and Maria and and and…and I think “What if they lived long enough for combination therapy? Would they be alive right now?”

I’m not gonna lie, I’m pretty depressed right now. I’m putting on a brave face most of the time, but it’s not fatigue keeping me in bed right now. It’s a sense that I’m fighting an uphill battle to stay alive. And I can’t help thinking, if it’s this hard for me, an attorney who knows how to navigate systems and has the ability to demand the best treatments, what hope is there for the broader cancer community to stay alive? What hope is there for my friends who are too sick to fight their insurance companies? 

When healthcare decisions are made based on costs and not on saving lives, this is the outcome. We see it happening all over the world, not just here in the US–talk to anyone in the UK about how NICE has made it impossible for them to get access to the cutting edge drugs that are standard of care in the US. But here the disparities between rich and poor, between savvy and unsavvy consumers, feel particularly cruel and despicable. It especially hurts when you realize that the annual cost of my drugs is about the same as one day of pay for an insurance company CEO. 

Does all this make you angry? Does it make you want to help? Good. It SHOULD make you angry. It SHOULD make you want to help. Here’s what I need from you. I want you to share this blog post around social media. Post it on the FEP Blue Facebook page. Tweet it at @fepblue on Twitter. And use the hashtag #SaveBeth. 

Tell them what you think of their decision to deny me the combination therapy that could keep me alive long enough to see The Boy start middle school. Tell them what you think of their business model that puts profits ahead of patient lives. Tell them that I’m not ready to die. Tell them that I deserve to live. Beg them for my life. 

URGENT ALL CAPS ACTION ALERT

You guys, we have work to do, TODAY. I need you all to call your Congressional Representative’s office, and tell the person who answers the phone this:

“I am calling to ask the Representative to sign onto the bipartisan Dear Colleague Letter to the National Cancer Institute regarding metastatic cancer research, sponsored by Rep. Peter King and Rep. Chris Van Hollen. It is imperative that we get more Congressional representatives to sign this letter immediately in order to save the lives of the 540,000 Americans who die each year of metastatic cancers.”

Don’t know who your representative is? No problem. Just call 202-224-3121 and they’ll put you through to the right office.

We need to get as many signatures as possible on that letter to ensure the letter has the maximum impact, and we need them in the next 36 hours. Don’t wait–CALL TODAY. 

I’m Old

It’s official, you guys: I’m old. Not because I’m 40–that’s solidly middle-aged, in my opinion. No, I’m old because I live like an old person. No, seriously, I do. Let’s go through the good and the bad of being old, shall we?

GOOD: All my life I’ve watched commercials for adjustable beds and thought “Damn, that looks amazeballs, I want one of those.” So last year we bought one, because I spend a TON of time in bed because of treatment-related fatigue. And guess what? IT IS SO MUCH MORE AWESOME THAN I EVEN DREAMED IT WOULD BE. Want to watch TV in bed with the kids? Adjust to Zero G. Want to eat lunch in bed? Adjust the head higher. Want to go to sleep? Adjust to flat. Husband snoring? Adjust to Partner Snore setting. Me snoring? He adjusts to Partner Snore setting. Why on earth didn’t I get one of these things sooner? Worth every penny, my friends.

BAD: Since I’m still on cisplatin/etoposide (we’re still waiting for approval–or not–of combination therapy), I’m spending about a week of every 3 weeks too tired to do much of anything but laying in bed. Like, we’re talking so tired that the Hubs has to run me a bath because a shower isn’t feasible and that’s after several days without bathing at all and I smell HORRIBLE. It sucks being reliant on other people to do things I used to do for myself.

GOOD: I’m retired. I’M RETIRED YOU GUYS. Y’all still going to work? Hahahahaha suckers! Best perk of my terminal cancer by far. I missed being a practicing lawyer at first, but now? So happy I decided to take that disability retirement. So grateful it was a possibility for me, too. I figure that working for the feds instead of at a private firm, I made about half what I would have, but now I’ve got a fatty life insurance policy, a fatty health insurance policy, and a livable disability retirement package, and I probably would have had none of that working at a law firm. 

BAD: No longer having much in common with my peers. Y’all bitching about your husbands not pulling their weight? It’s the opposite in our house–I’m the one not pulling my weight. Worried about your bodies not looking so hot anymore as you age? Yeah, I have no breast. Bags under my eyes are the least of my woes. Feeling nostalgic about your kids growing up too fast? I’d give anything for my kids to grow at twice their current rate, so I can be here for more milestones. This is why I avoid kid birthday parties, I just can’t do small talk anymore.

GOOD: I give no fucks. Old people? We give no fucks, man. We gave away all our fucks a looooooong time ago. We’re out of fucks. The fucks are all gone. There are no more fucks to spend. So when some jerk tries to tell me I’m pushing too hard for cancer research or I shouldn’t swear so much or whatever else, I don’t give a fuck. It’s very liberating to give no fucks. It reduces my stress level immensely.

BAD: I spend a lot of time thinking about death. When you’re old, and your friends are old, you have to watch a lot of them die. Which is made all the more traumatic knowing that I’m going to die the same way. I guess I lied, I do have a fuck to give about that. That’s my only fuck left, though.

GOOD: Let’s end on a good one. Being in a city, I am living in a golden age of delivery services. Too fatigued to go to Costco? No problem, there’s an app for that. Need lunch and you’re too tired to stand up long enough to make something? There’s an app for that. Did you run out of scotch? THERE IS AN APP FOR THAT. Just today I had an amazing bagel breakfast sandwich and a fresh orange juice delivered to my house from a local deli. I didn’t even have to get out of my pajamas for it.

You guys, I’m old now, so I’m going to give some advice because that’s what old people do. Old will come for almost all of you, even if it comes earlier than you thought it would. Be prepared for the bad that comes with it, but embrace the good too. And live as well as you can, no matter how old you are.

I’m 40! It’s Fabulous!

You guys, it’s my birthday! I MADE TO 40!!! I was hoping to have a big blow-out birthday like I did for 30 (rounded up my girlfriends and went to Mexico on a cruise–man, dual income no kids was a good time, amiright?) but of course I’m back in chemo world again, so that’s not possible. But I thought of something better anyway, because back in 2006 I didn’t have a blog, and I hadn’t founded a grassroots organization committed to changing the landscape of metastatic cancer through direct action. 

So here’s my big birthday wish, and I need all of your help to make it come true. I want you to go to metup.org, and click on the donate button. It’ll take you to a donation page for METUP’s fiscal sponsor, Social and Environmental Entrepreneurs. (We’re proud to be a project of SEE and very glad they’ll be filing all the tax paperwork for us next year instead of us having to file it!) And then I want you to donate, but not just any donation amount because it’s my 40th birthday. 

So, donate $4. Your latte costs more than that.

Or $40. That’s like 4 bottles of wine. I know it’s a sacrifice but I also know how much wine you drink.

Or $400, #bestdocever who just got back from a vacation to JAPAN.

Or $4000. Yeah I see you tech worker high roller driving a Tesla to work in my husband’s office. Don’t pretend like you don’t have the cash

Or $40,000. Hi Joan Lunden’s staffer who is so nice when we DM on Twitter! OK, at least retweet this one, will you? 

Or $400,000. Shut up, it could happen. No YOU’RE being delusional.

You get the idea. 4’s. Because 40 is FABULOUS. Or it will be, if you make my birthday wish come true!

DONATE HERE!!!

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.