• 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!