• The Long Waiting Game

    Apparently Megan’s doctor has a sarcastic sense of humor, or at least that’s what one of his nurses says. Funny, because so far, we haven’t seen that at all yet. Not sure what number appointment that’ll pop out, but like us waiting on next steps for treatment, I guess we’ll just have to wait and see.

    He started off the appointment telling us everything all at once. Nothing came through from the genetic testing that would help us pick a treatment path, Nexavar works well with hepatocellular carcinomas and generally helps people with liver cancer live longer but doesn’t always respond to fibrolamellar, there are clinical trials but none of them are really exciting currently, there is a dosage study at UCLA right now that could be an option, and immunotherapy is probably the best bet and it’s been PD1/FDA approved.

    So here’s the breakdown. If you read Megan’s last post, there were two top suggested treatments: Nexavar and Immunotherapy. The approvals are what is going to decide the order in which things are taken. It would be a stupid idea to do both of them at the same time, mainly because they’d wanna be able to make sure to check the progress on each one. Taking them simultaneously would make it hard to see which one was helping. From what it sounds like, it will take weeks for Immunotherapy to be approved, so while we’re waiting, they’ll likey put her on Nexavar and see how she does. We’ll get a base line CT scan next week so that they could track her progress. Once there is approval, they’ll switch over to Immunotherapy.

    After talking to the lovely Cheryl (our insurance advocate that Bob did a great job helping us acquiring as our ally), we were able to get the down load on how this process works. The process for getting Megan on certain drugs isn’t the same as getting her approved for a scan or a biopsy; the approvals for drugs actually run through the pharmacy. How quickly they go through the pharmacy depends on what status Dr. Finn labeled it as. As for immunotherapy, insurance usually doesn’t have any problem approving it as long as it’s for that specific type of cancer. So as long as we stay in the realm of liver cancer and not really go into experimental stuff, we shouldn’t have any problems. Hopefully.

    Jumping back to where we left off with Dr. Finn, we obviously had a lot of questions. The basics in terms of side effects, timeline, etc. were asked, but I (Danielle) had several of my own. The first one was why Megan wasn’t a good candidate for resection. From what I’ve read, this is one of the sure ways to remission and success, so when I heard that this wasn’t happening, I wanted an answer. The sum of it is that Megan has too many tumors. Her liver is covered, the masses are on both sides, and her lymph nodes are affected. Just removing the cancer won’t take care of everything else going on around it. Second question was if Megan’s tissue samples were being shared with any other studies or research. As noted in several past posts, there is little research out there and one of the reasons why is because they don’t have even samples to work with. By sharing Megan’s samples, maybe we can help and find something to help her in the process. Dr. Finn says that UCLA is happy to pass along whatever info a study needs, we just need to contact the study and see what they require (so more homework for me later). Third question was if we need to look into any familial testing in case of a transplant or any other tissue donation. Answer was quick, “Nope, it’s not a genetic thing. And she likely won’t need any donations”. Fourth was if Dr. Finn had any thoughts on the Simon’s research. He said yes, they have made great strides in the field in understanding how it works, but the problem is that they haven’t found a cure (sounded a bit negative to me, but he isn’t speaking incorrectly of their progress). And last but not least, the fifth question: thoughts on CBD oil? He said that doesn’t have any thoughts or opinions. It seems that when it comes to any alternative medicine, Dr. Finn seems to find it kind of hokey. When Megan’s mom handed him a paper on wheat germ extract, I watched his face carefully. He pulled his lip up into a sort of tight smile, the same that you’d see on a dad that was asked by their kid if Santa Clause was real. He was nice in taking the paper and read it over, but gently told us that he again has no opinion or thought on it but because it’s not well researched but seems that it could affect Megan’s hormones and how the cancer progresses, so it’s probably not a great idea.

    When it comes to alternative medicine and diets, there’s a lot. And there’s a lot that’s been suggested. CBD oil, essential oils, wheat germ extract, alkaline/kangen water, cutting out dairy, cutting out acidic foods/drinks, cutting out sugars… There’s a lot. Megan and I have had several conversations about it all. Some of it might be hokey, some of it just seems insane, trying to do all of them at once seems exhausting, but overall here’s what we’re thinking:

    • Our lovely friends Soomin and Natalia have started letting us come over to get Kangen water. It’s an easy change to make with our schedule, the only hard part is trying to make sure Megan drinks a gallon a day. Our opinion? Sure why not, can’t hurt to try it.
    • Our diet is going to change, but Megan isn’t totally on board with going super hard core. We eat mostly organic and are pretty healthy in general, but we are going to start being a little bit more attentive in some areas. Megan’s cutting out the coffee, I’m attempting to cook with more food that’s supposed to help keep her body healthy and fight everything cancer and I’m also attempting for the first time in my life to cook using methods and ingredients I have never used before (less/no dairy, omega 3s, whole grains, a lot of protein, a lot of veggies, a lot of raw – vegan mixed with paleo sort of deal). So far I’m doing well, I got Megan to eat beets and tofu 😉 lol However, Megan’s philosophy of living life to fullest means that every once in a while, a small splurge of ice cream wouldn’t hurt.
    • Anything THC related is out. Until we hit a point where it would help Megan with nausea or pain, right now is just not the time. Her work has random drug tests and she would never want to jeopardize her job or the people she sends flying out of the mountain. She has an amazing amount of self control when it comes to keeping her coworkers safe (she would never even do a mimosa in the morning even though she was working super late that same night). As for CBD oil without the THC, our doctor doesn’t advocate it and right now it’s just not a priority. So that’s on the back burner for now.
    • We might attempt essential oils simply because we have some and why not, but a consistent regimen might be hard to continue. We’ll see.

    So there it is. The very long gist of it. Megan’s next appointment at UCLA is on September 27th and her next CT is on the 8th. As usual, please feel free to hit us up with love and encouragement. A lot of people have been asking us if we need anything, and while we are totally grateful for everything we’ve received and everyone following her story, the biggest thing we can ask for right now are good vibes and inspiring thoughts for Megan. Until next time… D out.


  • The Rarest of the Rare

    So me being me (Danielle that is), I’ve been digging hard when it comes to whatever I can find online. Studies, research, foundations, charities, medical breakthroughs, therapies, memorials, blogs, facebook groups… And I am insanely amazed with how much information does not exist surrounding Fibrolamellar. There are less than 10 official groups on facebook that relate to some sort of foundation or mass gathering of people affected by this type of cancer. When it comes to studies, a consistent thing that keeps coming up is that 1 in 5,000,000 people get this disease and only a few hundred in the US are diagnosed a year. This means that when it comes to research or clinical trials, there’s a small number of people that can help contribute and because of lack of expenses for travel lack of financial backing for these studies, several studies include numbers under a hundred. It’s unreal.

    When it comes to support, there’s an incredibly small number of foundations. While there are a couple that seem to have a large following, most are independent memorials and charities for lost loved ones or people currently going through it. The most official so far (the only one that pops up for several pages on google) has been the Fibrolamellar Cancer Foundation. They have a whopping 1,759 people who have liked their facebook page (no offense to anyone from there reading it). I’m just in awe of how small this world seems. Yes, this is rare. Yes, it makes sense that there hasn’t been a whole lot of facetime for it because of how small it is. Yes, it’s hard to round everyone up when there are so little to round up.

    I’m not going to lie, earlier this week I felt insanely defeated and so incredibly unintelligent. I can usually find anything I want online with a little digging, but man, to have dug all the way to the bottom and to realize that there’s nothing else has been a total blow to my spirits. BUT, I do have to say, I did find some gold (even if it wasn’t a lot of it).

    Dr. Sandy Simon and Elana Simon

    I came upon an interesting set of researchers. A woman named Elana Simon was diagnosed with Fibrolamellar when she was a pre-teen, beating it years later. As she got older, she decided she wanted to pursue research on her cancer. Their goal is to pursue and understanding of this cancer using gene sequencing. Over time, they were able to find consistent genetic mutation in most of their patient studies; meaning that they may have found the common link. After this first round, they realized a few things: 1. There isn’t one database that documents all Fibrolamellar cases and 2. They need more participants and tissue samples in order to help push the data towards a cure. So they decided to start something called the Fibrolamellar Registry. Out of most of the research that I’ve done, I feel like they’re onto something. If you wanna read through an insane Reddit interview they did (it’s a little crazy but really informational if you get through it all) you can find that here. And if you wanna hear more about the breakdown of their study, Elana can explain it all to you here:

    Immunotherapy and Cell Therapy

    Right now, there is no “cure” for this type of cancer when it comes to treatment. When Dr. Finn was saying that there is no direct route when it comes to treatment, he’s telling the truth. There isn’t one type of chemo that does the trick, and because of that, people have been looking elsewhere for answers. A couple of them (which I find super interesting) are Immunotherapy and Cell Therapy. Here’s the general breakdown. This type of cancer is part of that person in the literal sense that it is not this outside entity that entered their body, it’s made from their DNA. Using this logic, the idea is to utilize each individual person’s genetic constructs to fight back. And easy way to understand this was an article in the New York Times: Setting the Body’s ‘Serial Killers’ Loose on Cancer”. Basically, the idea is to take that person’s blood, modify it so that it has a weapon to specifically fight the cancer cells, reintroduce it back into that person’s system which then kills off the cancer. From my understanding, it’s somewhat of the same concept for immunotherapy (weaponizing the immune system to fight back). What’s crazy about this is that so far, cell therapy is only working on a small number of blood cancers and has yet to make any way with others like breast cancer or other organ cancers. As for immunotherapy, there seems to be some trials that are hopeful for results. What makes this complicated is that it is again based on genetics and has to be applied to each person individually. There are obviously side affects and it’s not 100%, but they could be hopeful treatments. Right now Megan’s results are being sent for genetic testing, which could mean that if they find something that corresponds with this type of therapy, these could be an option. Note: If some genius scientist/researcher is out there reading this and is saying to themselves how much I’ve got it wrong or how much of a dumbass I am, please email me because I want to understand and this is what I’ve got so far. I want to get it right!

    So after finding this small, small amount of info I have, I still feel like I haven’t done anything. I’m gonna keep digging and keep looking; I hope there’s more to find. I’ve got some ideas percolating, so we’ll see how they play out, but I know there’s more I can do right now and much more that I can offer even though I’m just a designer. Anyways, to update everyone, our next doc appt is on August 26th. Hopefully we’ll have a gameplan by then. Until then, hit up Megan at the email below. She’d love to hear from you!