• Today was a good day

    Almost two months after her first dose of immunotherapy, it was time for a new round of scans and an appointment with Dr. Finn at UCLA. As you all know, Megan’s had a rough last few weeks, main symptoms being dry eyeballs, low energy and not producing saliva. At last month’s doctors appointment, we were kind of just told to hang in there. With her getting better slowly, we weren’t sure what we were hoping for.

    There was one thing that we kept secret. I guess it was because we didn’t want to get our hopes up or jinx things, but we also didn’t want people to get too excited. Megan hasn’t been able to feel the tumors in her belly. If you’re just catching up on things, that’s how Megan found the masses in the first place, which led to biopsies, which then led to a cancer diagnosis. Considering that she had lost 20lbs, there was the obvious possibility that her masses have gone into hiding and weren’t able to be felt anymore. But then again, there was a small ray of hope that something major had changed.

    Fast forward to the day after the CT scan (today), we headed to UCLA to meet with Dr. Finn. After waiting nearly an hour he popped his head in to apologize and said he would be with us soon, but wanted us to know Megan’s tumor had shrunk dramatically. He then closed the door and went to see his other patient. It was a moment we regretted not recording or throwing up on FB Live.

    Needless to say we were shocked and thrilled. When he finally made his way to us, he gave the details. The large tumor, Timothy is now half the size it was at the last scan. The other sizable tumor shrank 30%. The speckles of cancer in the liver are nearly gone. He cannot explain it and he wasn’t expecting it. Needless to say he was extremely excited about the results considering that it was just after one dose of immunotheraphy (nivolumab). He explained that with immunotherapy there is so much that isn’t known. His best guess is that the treatment was a spark that jumpstarted her immune system to kick into hyperdive and kill everything off. Hopefully this will continue without having to have another dose. If it does, it just might happen that Megan and the Tims will be the topic of a paper written by the famous Dr. Finn. Now we just watch her fight those tumors.

    In other Megan news:

    • She has gained enough weight back and looks good, although doesn’t have many clothes that fit.
    • Her eyes continue to be a big problem. They are very dry and sensitive to light. Dr. Finn is going to refer her to an ophthalmologist at UCLA. She is not producing any saliva so constantly has a dry mouth and it makes it difficult to eat.
    • Megan will have another scan Jan 23 and follow up with Dr. Finn on the 24th. It is our hope that she will continue to destroy these tumors. This is the best news we have had in a long time and the best Christmas present we could hope for.

    Now tears are of joy! We are so proud of my lovely daughter/wife for her tenacity, bravery and attitude. A huge thank you to all of you for your love and support, keep those good vibes headed our way.

  • 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.