Since my last post I have had two sets of scans.
I had my first scan in March, and with that came uncertainty. It appeared to have grown on the scan, but my primary oncologist, and surgeon from last summer remained skeptical of this being a recurrence. My oncologist in Cleveland believed it to be a recurrence. His opinion was that it would need to be taken care of sometime this summer.
My most recent scan has now put both of my oncologists in agreement. It's now 99.9% likely to be another recurrence. It is now measured at 9x8 mm, up from 6.8x6 mm in December. Luckily it is growing slow for Ewing's, and at least nothing else has come up on the scans yet, but it is still terrible news. This will need to be taken of, and will be soon.
The best option for me after consultation with both of my oncologists is to enroll in the Vigil trial (https://clinicaltrials.gov/ct2/show/NCT03495921). It was originally slated to start taking patients at the end of June, but has been pushed to the end of July. I had a virtual visit with my oncologist in Cleveland this past week, and right now the plan is for me to go to Cleveland on July 31st. I will have a bunch of tests/scans/appointments the following day, and I will have surgery August 2nd if I can be fit in. If not, I will have to wait for surgery on August 6th. I plan to be in Cleveland from the 31st through August 11th. After that I'll be back in Pennsylvania for a week to recover, and then I hope to go back home to Virginia.
The trial will be comparing two different treatment groups. Group 1 will receive the Vigil vaccine along with Irinotecan and Temozolomide chemotherapy. Group 2 will only receive IT (Irinotecan and Temozolomide), but if a patient progresses or recurs they will be moved over to group 1. There will be an equal number of patients in each group, so hopefully I'll be lucky and get the Vigil vaccine. IT would have been the treatment prescribed to me by Penn anyway. The chemo will be 5 days every 21 days. The Vigil vaccine will be 1 day every 21 days. The chemo will go for 9 months, and the vaccine will be from 4-12 cycles. The number of cycles I receive of the vaccine depends on how many vials are able to be produced. They are thinking anywhere from 6-12 vials will be made in my case. The chemo is all oral, so I will not need to miss any time from work for infusions. The side effects aren't as severe as last time, but the big ones are nausea, and diarrhea. I've been told that I will need to have a high protein diet, with lots of probiotics, and should start that now to condition my gut. Greek yogurt and kefir were both suggested to me.
The trial will be comparing two different treatment groups. Group 1 will receive the Vigil vaccine along with Irinotecan and Temozolomide chemotherapy. Group 2 will only receive IT (Irinotecan and Temozolomide), but if a patient progresses or recurs they will be moved over to group 1. There will be an equal number of patients in each group, so hopefully I'll be lucky and get the Vigil vaccine. IT would have been the treatment prescribed to me by Penn anyway. The chemo will be 5 days every 21 days. The Vigil vaccine will be 1 day every 21 days. The chemo will go for 9 months, and the vaccine will be from 4-12 cycles. The number of cycles I receive of the vaccine depends on how many vials are able to be produced. They are thinking anywhere from 6-12 vials will be made in my case. The chemo is all oral, so I will not need to miss any time from work for infusions. The side effects aren't as severe as last time, but the big ones are nausea, and diarrhea. I've been told that I will need to have a high protein diet, with lots of probiotics, and should start that now to condition my gut. Greek yogurt and kefir were both suggested to me.
In a sad kind of way I'm kind of relieved. I no longer have to worry whether I recurred again or not. I will be receiving systemic therapy which I wanted last summer. It felt wrong not doing chemotherapy last year. Since it came back it looks like my gut feeling was correct. When the spot showed up in October I never really bought that this wasn't another recurrence. Maybe I should be pushing for my doctors to be more aggressive with my treatment. We could have avoided waiting these past few months, and avoided the risk of it spreading more. What I will be doing now is what I felt I should have done last summer.
It's really frustrating that I just can't be done with this already. Its been five years since I had my first appointment to check out the pain in my arm. It's crazy to think that I've been in the cancer game for 20% of my life. Moving away to college was great for me. It was time for me to redefine myself, and not be reminded of what I went through so often. I hoped that last summer would have been my last time dealing with this. I hoped Virginia would be my new cancer-free zone like Penn State was. Now that its back, I will be suffocated by months of chemotherapy, and will be fully in cancer world again.
