• 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.


  • Just a little info

    Megan here. We got a bunch of info on a few different routes we can take for treatment. The genetic testing didn’t really help us as far as leaning towards a type of treatment, unfortunately. The two treatments we’re looking to explore first are: nexavar- a pill I’d take twice a day, may have a few side effects (some people get terrible blisters on their hands and feet- eek!), and I’d take it indefinitely, as long as it’d keep the tumors from growing, at a low cost of $5000 a month (that’s if insurance won’t cover it). Or immunotherapy- I’d go in once a week for an injection, wouldn’t have a lot of icky side effects and it’d only cost about $10,000 a month (again, with out insurance)! WOOOO. 

    There’s a lot of paperwork and junk, so it’ll be a couple of weeks before I start on anything. They took blood from me today and are getting another CT scan approved to use for baseline- I’ll probably get that next week. 

    My lovely wife will update with more later, but I know some of you have been waiting patiently for news so there ya have it.