• 18 Months and Counting

    It’s been a little while since our last post, mainly because there hasn’t been a whole lot to post about. What’s great is that things are still shrinking, just slower than they did a year ago. As you guys know, Megan’s first, last and only dose of Opdivo was in October of last year. While she dealt with a bunch of side effects, after the first dose, all of her tumors shrunk around 50% or were almost non-existent. Every time she’s gone in for a scan, they shrink a little less and less. We made a chart below to kind of show when treatments were, shrinkage and how her health faired during it. What we noticed was that her side affects coincided with how much Opdivo was still in her system. The longer the time from her first dose, the less drastic the side effects. Dr. Finn thinks that it has something to do with the combo of the Nexavar and the Opdivo; the thought being that the chemo prepped her body to be able to use the immunotherapy successfully.

    MegansTumorSizeChart-01CLICK HERE FOR LARGER VIEW

    In recent talks with a Fibrolamellar fighter about her online research, a similar reaction to a chemo/immunotherapy combo seems to have occurred with another patient in Jerusalem. From his post, a combo of 5FU-INF and Opdivo (5FU-INF [1 week on-1 week off] + Opdivo once a month, 5FU-INF treatment for couple of months and then the Opdivo) helped stabilize things for 9 months. Since they added the Opdivo, they claim there were no new tumors, growths in existing nodes, and there was slow reduction in tumor size. Side effects were mild colitis with pain.

    While Megan wasn’t on INF (we actually haven’t even heard about it), the combo and reactions sounded similar to Megan’s. Not sure how much of a connection, but worth looking into. Maybe chemo helped bring certain proteins in the cancer cells to the surface so that the immunotherapy could attack things directly? It’s also really important to note here that everyone reacts differently. While Megan had both the best and worst reactions, others might not have such a drastic result.

    Lately I’ve been working with the FibroRegistry consulting on their social media content as well as how they distribute their data, and I have to say, some really exciting things are happening. If you or a family member have Fibrolamellar and you haven’t had a chance yet, please check them out and consider taking their survey. Unlike other surveys, their survey collects over 75,802 data points. Combine that with 100+ participants and we have a pretty good pool of information that could help researchers and doctors find a cure. This year we’ll be focusing on sharing that information with the Fibrolamellar community. Hopefully that’ll encourage others to take the survey and generate even more information for the future.

    In the meantime, a brief update on us/Megan. Bad news first: The main reason it’s taken so long to get us posting is that we’ve been dealing with some news Dr. Finn dropped on us in November. In talking with him about his opinions on getting some genetic testing done he nonchalantly (in true Dr. Finn form) told us that he doesn’t think Megan should ever get pregnant. It was a major dream crusher and really broke our hearts a bit. But we’ve done a lot of talking and thinking and healing on it and have agreed to just wait to figure out family life for another year or so, since long ago we thought we wouldn’t start a family for 3-5 years anyway. OK, ON TO THE GOOD STUFF! Megan is doing great! She’s working out everyday, she’s able to go to work and pull her weight, the range of foods she can eat has increased (we can eat Mexican food again!) and she’s in high spirits. She is still dealing with some side effect aftermath (lots of visits to the dentist), but is overall doing pretty good! We are headed on a trip to Africa with the group With My Own Two Hands at the end of the month and couldn’t be more excited about it! Our first time traveling with them was three years ago (that’s actually where we got engaged :D). The last time we considered going was when Megan was going through treatment, which would have been a bad idea considering how many hospital visits occurred in that time frame. Obviously we’re feeling much more optimistic now-a-days and we can’t wait to get back there to spread some joy and help the amazing people of Kenya out a bit!


  • 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.