Latest Scans – Back To Kicking Cancer’s Butt!

Matt had an oncologist visit yesterday to review the latest scans and have several qualification procedures done which were needed in preparation for the upcoming clinical trial we are hoping to enroll Matt in.

Matt’s oncologist first reviewed scan results with us and overall there has been significant improvement! The spots on the lung have shrunk greatly, and the spot on the sacrum which was glowing brightly with the last round of scans now is just a dim glimmer. For those not familiar, the brighter the spots which appear on a scan the more active the cancer. So dim is good. It’s been 14 months since the last good scan so it’s been a long time coming.

The MRI showed no activity going on in the head region which is also good news as Matt has had active cancer there several times in the past as well. This chemo regimen seems to be making some good headway on destroying these cells. Radiation is still planned and hopefully that will kill off even more of these cancerous cells.

We then discussed the upcoming clinical trial. Matt had several things scheduled yesterday including a blood draw, a bone marrow aspiration under anesthesia, an EKG, an echocardiogram and a hearing test. That’s more procedures in one day than some have had in a lifetime. Some of these were qualifiers for the clinical trial and some were just for baseline measure. The EKG, hearing test, and bone marrow aspiration were all needed as part of the clinical trial but would not disqualify him based on results.

The ones that would potentially disqualify him were the kidney function (based on blood test and/or urinalysis), the scans (must have stable disease), and the echocardiogram (heart function). As the day progressed, we checked off all those boxes one by one. I told him I would figure a way to drag him past the finish line if I had to. Didn’t have to. He did it all on his own.

And after a very, very long day HE QUALIFIED!

So what’s next? We start the actual clinical trial on Monday. It officially opened up here in Tampa on Tuesday. Matt’s entire care team have gone above and beyond to bring this trial here so Matt could enroll. There were a lot of moving pieces and tight deadlines, but they made it work. We are extremely grateful for having a group so dedicated to his care. In fact, Matt will be PATIENT #1 on the trial. It will be the same chemotherapy regimen he has been on with a 21 day cycle (5 days in a row in clinic getting chemo treatment and 16 days off). This will happen for a total of 4 more cycles. In conjunction with this Matt will be taking a drug known as DFMO every day during that 21 day cycle. More on this drug in another post. The goal is to have clear scans after this fourth cycle and then be on DFMO as maintenance therapy. Here’s a link to the actual trial. Clinical Trial BCC023 Matt will be in Cohort 1.

The only downside here is that the DFMO is 11 pills in the AM and 10 pills in the PM. They can be crushed and mixed into food or a drink which is most likely what we will do. On the upside, the drug will be entirely funded by Beat Childhood Cancer who is sponsoring the trial. We are very thankful for this as well because, if I’m mathing correctly, this drug and the dosing Matt needs would cost somewhere in the neighborhood of $10,000 per week out of pocket. We’ve been trying to gain access to this drug through insurance over the past several years but continually got denied as it has not been FDA approved yet for Ewing Sarcoma.

As I mentioned earlier, radiation is still on the schedule. The sacrum area needs 15 days of radiation and there’s still some radiation that will need to be done to the lung area. However with this new set of scans maybe the amount of days to radiate can be scaled back a little. Fingers crossed.

Overall, things are moving in the right direction once again. We’re excited to have Matt start this clinical trial and feel it’s a big step to getting him back to remission.

There’s a small chapel nestled amongst all the offices and surgical rooms at one end of the hospital. It has several rows of chairs and an altar. Shortly after Matt was diagnosed over 4 years ago I visited that chapel. I sat in a chair all alone in the back row and prayed hard for Matt. As the cancer kept returning over the years I often wondered if I was ever heard. I hadn’t returned to that chapel since then because Matt was mostly being treated at the other end of the hospital over the years. Until last week. I visited that chapel again after they took Matt back for his scans. Four years later I sat in the same chair alone again and prayed even harder for cleaner scans and just a chance for Matt to get into this clinical trial.

Prayers lifted. Prayers heard. Prayers answered.

We continue to thank all of you for your continued prayers and well wishes for Matt as he continues down this cancer road. It’s a road filled with a lot of bumps, curves, and obstacles. And our GPS seems off at times. But Matt keeps on driving right on through all of it. Thank you all for riding along.