• 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!


  • 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.