Second Opinion and Six Month Scans

About two weeks ago I had a chest CT and a second opinion. The appointment was an online video chat, and went well. I had a ton of questions to ask, and we went through them all. My mom also joined in on the call. So onto the details...

He was very happy to provide me with good news. The nodule seems to have shrunk, or at least didn't grow rapidly. He was very surprised. After receiving my last scan in December he thought this was a recurrence. In fact, he said later in the appointment that he expected this to have grown with possibly more spots show up. To him the results were somewhat of a miracle. He asked me who's all praying for me twice during the appointment.

There is one caveat to this though. The scan wasn't at the same detail that I usually have. At Penn I have 1mm cuts, and this most recent one was done at 5mm. This is an issue because it's possible that the scan is underestimating the nodule's size. This was one of the first things that my oncologist mentioned to me when going over the results. My oncologist will contact the hospital down here in Virginia to make sure I get better images next time. 

Mostly everything he agreed with when it came to the care I received at Penn. I would have been treated the same. He also wouldn't have given me chemo after recurring. Chemo would have stayed the same after the low necrosis rate following surgery. He did point out that there was a new study done in 2016 that raises the importance of the necrosis rate following surgery. Based on that study I had a poor response to chemo. In the study, patients who had a 0-50% necrosis rate had a five years survival rate of 49%. Mine was somewhere in the range of 20-40%. I'm almost at five years since diagnosis so I have beaten the odds so far. It levels off around 13 years where survival is around 37%. Below is a graph from the study. Some hospitals have started treating patients with a poor response to chemo differently. I might have had a few more months of chemo if I was treated today. Those extra months would have been with different drugs than what I received. And that leads to my next point.

The drugs that they are giving to patients with a poor response to chemo are Irinotecan and Temozolomide. They are a popular cocktail as a first line treatment in recurrences. If I have to go back on chemo he suggests I go on a trial utilizing these two drugs with an experimental drug named Vigil. It's an immunotherapy treatment. He suggests this because he believes my immune system is very strong, and is probably one of the reasons I recurred so late. He even suggested that my immune system could be keeping this nodule at bay given that it is Ewing's. The only bad part about this trial is that the closest hospitals that offer it is the Cleveland Clinic which is where he is located, and Memorial Sloan Kettering in New York. I would need to travel there every three weeks to get an injection of the trial drug. My oncologist didn't have much to say about the trial. He doesn't want to get too far ahead of ourselves yet. We'll have a meaningful discussion if we have to. He did say he would likely put me on IT also. I was told that the side effects aren't even close to as bad as what I had before. They are both oral chemotherapy drugs, so no sitting in a chair for a five hour drip. I would be able to continue to work and do all of the normal things I do. I was happy to hear this because when I think about going back on chemo I think about what I went through and that was really terrible.

I asked about getting more imaging studies done like PET or bone scans, and he doesn't think they are necessary. Ewing's usually goes to the lungs when it comes back, and with only having one small, slow growing spot come up so late, it's probably no where else. I would have symptoms if it spread to bone. If the nodule grows, he suggests getting more imaging tests done. He has no reason to believe that I have a local recurrence considering how well the arm surgery went, but said there is a very small chance, though unlikely, that a local recurrence to my arm could be the source of these lung nodules. I really hope not.

The appointment helped relieve a lot of the doubts I had with my care. The recurrence brought all of my doubts about my care to the forefront along with many new ones. My case is more complicated than ever now, and I didn't want to have any regrets about not seeking help elsewhere.

So what is this nodule? No one knows yet. My oncologist is still not worried about it. The second opinion doctor is a little more on the cautious side, but still positive. My best bet for now is getting another scan in mid March, and taking it from there. It'll be more detailed this time, so a more definitive answer will be able to be made. I will forward the scans to Cleveland as I will be keeping him in the loop with my care. If the scan is good I will move back to 3 month scans.

Some other things to mention. I finally got my car back from repairs. Everything, including the rental car was covered by her insurance, so everything worked out well. I finally went and got a Virginia driver's license, and all of the car title and registration stuff done. I was living in between scans like I have the last couple of years. I didn't want to waste my time with getting that done only to have to do it all over again in PA. Like back in college, I would wait to take my college loan out for the semester until after the scan in the break. So that's exciting. I'll get my Virginia license and license plates in the mail soon. I'll be a true Virginia resident y'all.

Next update will be late March. Take care. Please keep me and all of the other sarcoma warriors in your prayers.