Immunotherapy!

Hi all! It’s been a bit since I last updated on my health, so I thought I’d share what’s going on. I’m currently sitting in a infusion chair at my oncologist’s office because today is my first day on my new treatment: Keytruda and Yervoy. If this post suddenly turns weird like I’ve lost neurological function, somebody buzz the nurse for me, will you?

As you may have seen on Twitter, I had gamma knife on my brain last month, because I’ve got a zillion tiny mets in there. OK, not a zillion, but like, 50? Now, most doctors would do whole brain radiation with that many brain mets, but I flat out refuse to do WBR unless it’s an absolute last resort. I don’t have any symptoms from my tiny mets, and WBR can cause cognitive issues. So fuck that, we’re saving that for when I really need it. Instead, we zapped 26 of those little fuckers in my brain, the ones that were growing and/or were likely to cause symptoms if they grew. It went fine, although now I have a couple bald spots from the mets that were close to the surface. Right now my hair is curly so it hides the bald spots.
Then I had 5 days of traditional radiation on my lung met (actually a cluster of lymph nodes in there rather than the lung tissue itself) that’s given me a chronic cough, as well as the met in my humerus. It’s at the very top of my humerus and it was causing a bunch of pain. 5 days was short enough that I didn’t have skin problems from the radiation, though fatigue has been a challenge. Then again, when isn’t fatigue a challenge for me?

And, now I start on Keytruda/Yervoy! Immunotherapy is supposed to work even better after you’ve had radiation, and Keytruda’s the drug that cleared Jimmy Carter’s brain mets, so I’m really hopeful it’ll work as well for me. Often immunotherapy drugs like Keytruda and Yervoy don’t work great on breast cancer because it tends to be less immunogenic. In fact, there was some pretty disappointing data out of ASCO this year on Keytruda in triple negative breast cancer. But we all know my cancer doesn’t work regular breast cancer, because it’s neuroendocrine breast cancer. And, cancers with big mutational burdens like mine tend to respond better to immunotherapy than those with low mutational burdens. I read a study recently about a woman with metastatic neuroendocrine ovarian cancer, and radiation plus Keytruda got her to NED in 4 months, and kept her NED even after she went off Keytruda due to side effects. I desperately want that to be me.

Getting the drugs was an administrative headache, of course. Since neither drug is approved for breast cancer, I had to go through the patient assistance process again. Merck’s process was super easy and fast and we had approval for Keytruda pretty quick. With Bristol Meyers Squibb, there were some paperwork headaches, plus a complication created by insurance. So, my insurance doesn’t require preauthorization for Yervoy, which means they’d pay for it–BUT. Because I’d be getting it off label, it’s entirely possible they’d come back later and try to get their money out of me. And I can think of a lot of things I’d rather spend $55,000 on than Yervoy. Like two years of my mortgage payments. But, the financial person at my oncologist’s office is tough and smart and she handled getting my insurance to realize they didn’t want to pay for off-label drugs, which got BMS to give me the drug for free.

So, that’s where I’m at. Everyone keep you fingers crossed that I’m one of the lucky ones who responds to immunotherapy. And, as always, I’m so grateful for all the support I get from all of you! Your words really mean a lot to me.

Murderers

Tomorrow Congress may vote on a change to our country’s health care system that will kill people with cancer. That’s not hyperbole, it’s the truth. The new healthcare bill is even worse than the one that’s being voted on tomorrow. It’ll allow our insurance companies to charge cancer patients like me hundreds of thousands of dollars more just to have health insurance. It’ll allow insurance companies to refuse to cover my son, who was born premature. The members of Congress who vote for this bill are aware of exactly what it will do. They know that if this bill passes, millions of Americans will die for lack of health care. 

In the law, a murderer is someone who knowingly, deliberately takes an action that takes someone’s life. Voting yes on this bill makes people murderers. They are attempting to kill me, to kill other people with cancer, to kill other people with disabilities, to kill other people with illnesses. Their motive is money–we cost too much to keep alive. We are not worth the money that insurance companies must spend on us. 

If your member of Congress is considering voting for this bill, I beg you to call them today and tell them what you think of it. Tell them they are murdering your friend Beth Caldwell with their vote and you will make them pay for that vote. Use your voices to rise up and destroy this bill that will slaughter millions of Americans. And if they won’t listen and they vote for it anyway, you must follow through on your promise and use your votes and your voices to ensure they lose their power. A murderer has no place running our government.

Click on this link for a list of key members of Congress you should be calling. Fill up their phone lines demanding that they refuse to vote for this murderous legislation, and reminding them that their constituents will not vote for a murder next year. Keep calling until you run out of breath in your body. My very life depends on it.

The One Not There Next Year, redux

For those who missed it, my last post was about how treatment would be keeping me from going to the Living Beyond Breast Cancer Thriving Together conference this year, and how we never know who will be too sick/too broke/too dead to attend next year’s conference, and how we’re scared it’ll be us. I wrote about how a friend of mine had cried at last year’s conference and said “I’m the one who won’t be here next year,” and how, in the end, it was me who wouldn’t be there, and her who would be–she had made plans to travel there with her mom as her caregiver.

The best laid plans.

That friend was Mandi Hudson, of Darn Good Lemonade, and she died this week. 

I don’t have words. I didn’t realize it was possible to feel this empty.

And ironically, my platelets were too low for chemo last week, so my schedule is bumped by a week, making LBBC weekend a real possibility for me instead of a pipe dream. So, I booked myself a ticket and a hotel room, both refundable in case my body refuses to cooperate, and I’m planning to be there. If there is anything Mandi has taught me over the years, it’s to not let this disease steal more from us than absolutely necessary–to figure out a way to do the things that are important to us, even if they seem difficult. And seeing my friends, some of whom I’ll never see in person again, is important to me.

Lately I’ve been listening to the Hamilton soundtrack nonstop (The Girl loves The Schuyler Sisters) and the song Wait For It keeps running through my head. “Death doesn’t discriminate between the sinners and the saints, it takes and it takes and it takes, and we keep living anyway, we rise and we fall and we break and we make our mistakes…and if there’s a reason I’m still alive when so many have died, I’m willing to wait for it. I’m willing to wait for it.”

I’m still waiting for it. But I’m writing like I’m running out of time.

If you’re anywhere near Philadelphia on April 29, even if you can’t come for the LBBC conference, please come meet up with me and METUP for the third annual Philly die-in. You can find event details here

The One Not There Next Year

The annual Living Beyond Breast Cancer Thriving Together Conference, for people with metastatic breast cancer, is happening next month. The 2015 conference is where I met so many of my favorite metsters, and where the very first MBC Die-In happened. I met even more of my favorite metsters at the 2016 conference last year. It’s a fantastic event, life-changing really, and I highly recommend it. If it’s at all feasible for you to go, don’t think, just go!

I really want to be there this year. I keep trying to come up with ways to make it happen given my health situation–The Hubs said he could maybe come along so I have someone to push the wheelchair and haul the luggage and take me back to the room when I’m too tired to participate anymore. But the further I get into chemo, the more I realize it’s probably not feasible for me to fly all the way across the country and expect to be able to do anything other than lay in bed for 3 days.

Yesterday I went to see The Girl’s first dance recital–she’s in a class for preschoolers called Creative Ballet, and the show was ADORABLE–and had to spend the rest of the day laying down. The other time I’ve gotten out of the house since chemo? Thursday I spoke at a press conference on Trump’s #deathbudget and how the cuts to NIH will literally kill me. Both outings required my wheelchair because I couldn’t have walked as far as I would have needed to in order to participate. After Thursday, I spent the next 48 hours entirely in bed other than to pee. Both outings were COMPLETELY WORTH IT. If we don’t keep advocating for us, we’ll all die. If I wasn’t at The Girl’s dance recital, knowing the next one isn’t until next year…well, I never would have forgiven myself.

I think sometimes people don’t realize just how physically limited I am right now. When I say I’m not capable of flying across the country, I’m not looking for suggestions for how I might be able to go–I’ve thought up every idea there is already, believe me. I actually mean I’m not physically able to make the trip. (Hey LBBC: I so so so wish the mets conference was more centrally located instead of in Philly. A 3 hour flight I might be able to do. And it’d cost less too!) LBBC’s conference is right up there with the dance recital and a press conference in terms of importance to me. If it were possible, I’d be there.

Every year, there’s someone who was at last year’s conference who’s not there the next year. There will be a lot of friends of mine who won’t be there this year because they’ve died. I cry whenever I think of any one of them–the thought of all of them not being there this year causes me physical pain. Every year I leave the conference, I go to the airport, sit in a bathroom stall, and bawl, wondering which one of my friends, old or new, will be the one who’s not there next year? Which one will I never see again, because they’re too sick to travel, or worse?

Last year at the conference, one of my friends had just gotten some news of progression, and she cried and said “I’m the one who’s not going to be here next year.” And I hugged her and told her that I will always love her, whether she’s here or not. Now it’s looking like she might be the one to be there this year, and I’ll be the one who isn’t. If I’m not there, which of my friends will I never get to see again? Which will never get to see me again?

Worst Wife Ever Moment: March Madness

Hello, my name is Beth, and I’m a college basketball addict. I get a little twitchy when the season is over as I go through withdrawal. And when the season starts back up again, I’m giddy, but not even remotely as giddy as I am when the tournaments begin. For those not in the know, we call tournament time March Madness. This is when I go on a college basketball bender.

I became an addict in college, when I was in the pep band. (I played the flute. Next question: do you still play? I mean in theory I still could, but I haven’t in a looooooooong time, so I’m guessing my skill level at this point would be somewhere around middle school band.) Being in the pep band means you’re part of a Band Family that spends a ton of time together and has all the drama and love that a real family has. It also means you go to a zillllllllllllion basketball games with your Band Family. So, a lot of my favorite memories from college involve watching basketball, both women’s and men’s games. Which means there’s all sorts of positive emotions that I associate with college basketball, which of course feeds my addiction.

Right now we’re really just at the start of my bender. It’s Championship Week, when each of the college sports conferences has their championships. Today The Hubs took The Kids to Emerald City Comicon, so I’ve spent most of the day watching women’s basketball games, including watching West Virginia upset Texas in the Big 12 semifinal. I’ve been a West Virginia fan since college, because lots of folks from our band were friends with folks from the WVU band. So, anytime West Virginia is playing against a team that isn’t from a school I attended, I root for them. It was rad watching those two teams battle it out right up to the end of that game. AND, I loved that their Mountaineer mascot at that game was a woman.

I’ll be honest: this is an addiction I have no intention of recovering from. I intend to spend every March for the rest of my life trying to convince my kids to get into college basketball, and if they don’t, well, I guess that means that The Hubs is going to have to do some serious single parenting on game days. And during March, almost every day is a game day.

A good example: last night was the Duke-UNC game, a huge rivalry game. I camped out on the couch with some cheese fries (that The Hubs made) and a glass of wine (that The Hubs poured me) and watched the game. When The Girl asked me to play princess play doh with her, I was like “I’m watching the game, want to watch it with me?” And of course she’s like “Uh, no, I want to play princess play doh” and I’m like “Then ask Daddy to play with you because I’m watching the game.” Which meant that Daddy got to play with a prince made out of play doh. Did I mention he also made dinner for everyone?

Poor guy. 

At least I’ve managed to get The Boy interested in basketball. He plays some, including in an afterschool club, so I’m excited to see if I can get him to switch from being obsessed with the NFL to being obsessed with college basketball. I like watching football, I guess, but I really need someone to dig on college basketball with me. The Girl says she’s really not into sports, which makes me so sad because she’s probably gonna be tall, so imagine what a great basketball player she could be! Le sigh. So, it’s all about The Boy right now. He’s agreed to watch the Selection Sunday show with me next weekend and to fill out a bracket.

Which gave me a great idea: why not encourage my fellow college basketball addicts to be come Worst Wives/Husbands Ever and obsess over the Big Dance with me? So, here’s that you’re gonna do: Download the ESPN Tournament Challenge App and sign up and create a bracket. (It’ll be blank for now because there we won’t know who’s in the tournament until Selection Sunday. If you sign up after Selection Sunday, you can work on your bracket right away.) Then, there’s a link that says “Create/Join Group”and you want to click on that, and then search for Brackets With Beth and join our group.

Is there a prize for whoever wins? No, because I’m cheap. But apparently if you do well compared to everyone else on the ESPN app, ESPN will give you some sort of prize? I have zero shot of winning that–I couldn’t even win my office pool, let alone a pool that includes the entire country–so I haven’t event looked at what the prize/s is/are.

Now go turn on your TV and watch some college basketball, and make your spouse take care of the kids! 

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!