Relapse #3

Things have not gone well since my last update. I recurred again, and have been scrambling to get treatment setup. It's been a really stressful month, but now that I have a concrete plan I feel like I'm in a much better spot to post an update.

This time it is a nodule on my left lung. A single pulmonary nodule like the last two relapses. I have already taken care of it so here is what happened.

• It was there in August. Missed by the radiologist, and was 6mm. I had surgery a month later for the spot in my right lung to get on Vigil trial. Had they found this nodule I would have likely been on the Vigil trial because I only needed one more vial of vaccine. As you'll see below it might not have been a great fit anyway as the chemo portion did not work.
• Also missed in November, and it was 8mm. Found a spot on my liver which was new, but likely to be a hemangioma (no problem there).
• Finished chemo in February, and had a CT scan. Still growing and now 1 cm. Missed again by radiologist. Hemangioma on liver still worried me, so asked for an MRI to ease my doubts.
• MRI at end of March verifies that liver spot is a hemangioma, but radiologist finally sees the lung nodule. Now 1.1 cm. Some doubt was made about this because MRIs are unreliable for lung scanning, but CT afterwards validated that this was a likely met.
• After consultation with Cleveland Clinic a decision was made for radiation. The nodule was in a difficult spot and would require a lobectomy. Recovery time would be much worse than my past two wedge resections, and radiation provides an 85-90% local control rate compared to 80-85% for surgery in this particular case.
• Decided to have radiation at Penn since they have a really great radiation department, and I could stay at home in Pennsylvania for the week to rest.
• May 14-20 I had Stereotactic radiation performed on the left lower lobe nodule. The nodule is dead.

If I had to describe this whole process in one word it would be "frustrating." How could so many very competent radiologists miss this nodule? It grew throughout the chemo. I really struggled throughout the IT regimen, and it wasn't even helping me. That is so upsetting. Had it been found earlier I could have pivoted to a different regimen, and avoided the pain and lost time.

It was a struggle after recurring to get a plan setup as well. My calls and emails to my treatment teams at both Penn and VCU weren't getting me anywhere. I waited for over a week at Penn with no response so I just setup an appointment with the radiation oncologist myself without a referral. Communication at VCU wasn't good either. I called everyday one week and never got a call back. I had to setup an appointment to be able to discuss something that could have been done over email/phone. Very inefficient.

The only hospital that I really can't be frustrated with is the Cleveland Clinic. I emailed my oncologist there, and I had a virtual visit setup within the week. That Monday my case was presented at the multidisciplinary tumor board, and the plan to go with radiation over surgery was decided. In other words, my whole treatment plan was decided in just a few days. I even texted him on another day and he personally called me later that same day to ease my doubts with the treatment plan he recommended. I wish I lived in Cleveland just so I could get my treatment there. I have more confidence with the Cleveland Clinic than the other hospitals involved in my case by far right now. 

As I've stated here in the past, at this point in my care it is extremely important to see a doctor with as much Ewing's recurrence experience as possible, and no one beats my oncologist at the Cleveland Clinic. There is no standard treatment for recurred Ewing's, so treatment will be based off of the doctor's instincts. 

I'll get another post on here about my experience with the radiation treatment. I'd rather keep it separate from this one. As for the chemo plan I will be going on Doxil + Temsirolimus. It will be for 6 months. Doxil will be once a month, and Temsirolimus will be once a week. This regimen is supposed to be more taxing on my body than IT. Doxil is a new version of the "Red Devil", but it doesn't damage the heart. Temsirolimus is a drug that has been shown to sensitize cancer stem cells to chemotherapy. It is believed by my care team that the original therapy five years ago eliminated the fast growing Ewing's cells, but what has been problematic for me is these subpopulations of chemo resistant, slow growing Ewing's cancer stem cells that survived. The approach here is for the Temsirolimus to sensitize the cells, and the Doxil to sweep them up. It sounds great on paper, hopefully it works.

How do I feel about recurring again? Horrible. Almost as bad as the first recurrence for me. I understood when I recurred the second time. I did not believe in not doing chemo with the first recurrence so it kind of proved my bias with wanting chemo at the time. I think that is why this recurrence feels worse. I did chemo and it did not work. The nodule continued to grow unfazed. I put myself out there more this time and still got beat. Also, it went to my left lung, so it is spreading further. I have not had a clear scan since December 2016. I'm both physically and mentally tired. I just want to move on and not worry about this anymore, but it just feels like I'm so far away that I'll never get there. My oncologist still feels positively about my case, but from my point of view it is hard to. Hopefully this treatment plan works.

Lookout for a post soon about the radiation treatment I had. Take care!