• Rollercoaster

    Megan may love rollercoasters, but this is one ride she is ready to get off!  It has been overwhelming for her and Danielle, things changing daily, sometimes hourly.  I will try to reconstruct the past few weeks:

    10/14 First immunotherapy.  Followed that evening by a trip to ER with severe pain.  Pain diminished, ultrasound showed nothing and she was released at 2 am.

    10/17 Last time Megan was well enough to go to work.

    During the week she developed among other things: flu like symptoms, including fever (sometimes very high), chills, aches, diarrhea, etc.

    10/22 Was a major effort on the part of Megan and Danielle, but at Megan’s insistence they make a 1.5 hour drive (one way) to attend Gupta and Erin’s wedding.  M&D were so happy to be a part of their celebration, sure hope the pictures are good.

    10/24 Symptoms continued to worsen, Dr. Finn’s office wanted her to come in for an appointment.  It was decided she should be admitted to the UCLA Santa Monica hospital.  Between fighting with insurance company and waiting for a bed to open, Megan began to feel worse.  Her heart rate was up and she was vomiting.  She was told to go to ER, after waiting in at the dr. office for nearly 6 hours.  Once finally admitted, did blood work (twice) and a plethora of other tests, daily.  Began treating all her symptoms.

    10/25 No signs of infection, doctors think all symptoms were related to immunotherapy.  Fever continued off and on, rash would come and go.  Some back pain.  Medications for all the symptoms.  Danielle spent a second night with her in the hospital.  Normally no side effects from immunotherapy appear until at least after six weeks of treatment.  My daughter, the trail blazer.

    10/26 Thought she would be released and I decided that I needed to be in CA with my girls.  High fever returned, so they decided to keep her another night.  I flew into LAX instead of Long Beach and went to the hospital.  She was not doing well at all when I got there, fever high, ice packs all around her, curled up in a little ball. Not what a mother wants to see.  Worst part is that my kiss did not make it all better.  Sent Danielle home to get a good night’s rest in a bed while I stayed with Megan.  So grateful Danielle is part of our family!

    10/27 Fever continues to come and go, she now has thrush and a sore throat, so she is not eating.  Her diet is basically ice chips and applesauce. Her mouth is extremely dry, as are her eyes.  They decided to let us go anyway, checking out at 4 pm, with a terrible drive ahead for Danielle to get us to Long Beach.  Took about 2 hours to get home.   Dropped Megan and Danielle off and I went to pick up Megan’s 7 prescriptions!

    For the next several days she continued off and on with fever, very fatigued, dry mouth and eyes and throat getting worse, not eating much of anything other than ice chips, applesauce and sometimes a protein shake that Danielle makes for her.  Megan compared a normal sore throat pain as a 3, this pain was an 8!  Almost everyday someone stopped by to visit her.  Even though she wasn’t very sociable, the visits were always welcome, thanks to those of you who were able to stop by.

    11/1 Appt with Dr. Finn.  He reminded her immunotherapy is non-toxic so this wasn’t supposed to be happening.  He thinks the pain in her throat is an ulcer on her uvula, and that it’s quite possible that she has more down her throat.  She has an appt with an ENT Dr on Thursday, at 4:30 in Santa Monica.  If it is a virus, which is what Dr. Finn thinks it will just have to run its course.  He gave Megan an RX for lidocaine, which she said is by far the worst thing she has ever put in her mouth and unfortunately did not numb the pain much. She has lost 14 lbs in 8 days.

    Dr. Finn thinks this is all related to immunotherapy.  His main goal right now is to get her symptom free.  She has her next appt with him in two weeks.  He will order CT scan and re-evaluate her treatment plan.  I too want to see her symptom free, so I continue to stick around until that happens, or until they throw me out.  Hopefully she is at her worst with the ulcer in her throat and tomorrow I can start on a wonderful task – Fattening her up!

    Thank you for all your positive thoughts, cards, flowers, presents and visits.  They all make a difference so please keep them coming.

  • 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.