Mike Judge vs Ewing's Sarcoma

I forgot to post this a few days ago. Right now I'm in cycle four and an update on that will be soon. Since my last update I have finished my third cycle of treatment, and also had a CT scan. The results of the CT scan were good. There was no evidence of disease. I was nervous with this one especially since my last nodule showed up on the scan following my last surgery. The odds of that happening were probably much less than last year because I'm actively fighting it with treatment. As for the chemo I'm still struggling with taking it. I threw up more times this cycle than the last, but luckily still didn't throw up the chemo. I did much better with the nausea throughout the day, but the nausea at treatment time was just as bad if not worse than cycle two. For nausea I would definitely recommend taking Marinol because it worked much better for me than Zofran/Compazine. The only negative is that it made me tired. It will be a challenge taking it while I work, but I...

I'll be starting cycle three this Wednesday, so here's an update on how cycle two went. This last cycle was definitely worse than the first, and the big difference was the level of nausea I experienced. I had a really tough time with it. I threw up three times this cycle. I'm mostly struggling with anticipatory nausea, but the nausea I experienced throughout the day was a bit worse than last time too. For those of you unaware what anticipatory nausea is, it is basically what you would think it would be. It's nausea caused by psychological conditioning. For example, back when I took chemo five years ago I hated taking the drug, Mesna (which is a drug prescribed to guard against bladder damage from chemotherapy). It would give me a horrible taste and smell sensation. After taking it a few times I eventually became nauseous just thinking about taking it, and it would get even worse as I was about to take it. I have struggled with this way more with my current regimen. T...

Since my last post I have completed my first cycle of chemotherapy. Getting started was a hassle as there were delays with insurance and the pharmacy at VCU. Irinotecan is typically an IV drug, and VCU has never offered an oral solution. To my knowledge the Cleveland Clinic has been one of the only hospitals to offer an oral solution, and that's to help out patients traveling from all over for the Vigil trial. There were multiple calls made from VCU to the Cleveland Clinic, and eventually everyone was on the same page. Luckily it all worked out and I got started on October 10th which was only two days later than I wanted. I pick up my Irinotecan at VCU, and I pick up the Temozolomide at CVS through their specialty pharmacy. Being on the oral chemo will be much less disruptive than if I were to go through IV. Every cycle I will have bloodwork to make sure I can start chemo. The Temozolomide is simple to pickup since the CVS is within a mile of my house. I pick up the Irinotecan at...

Two weeks ago I traveled to Cleveland for my lung surgery. The surgery went well as expected. I was the first surgery of the day. My mom and I arrived at the hospital at 6 a.m, and I was knocked out by 7 a.m. The surgery took about an hour. The surgeon removed a wedge measuring 6.2x2.2x1.1 cm which was smaller than last year, but the nodule itself was larger measuring 0.9x0.5x0.3 cm. The surgeon was surprised by the minimal amount of scar tissue from last year's surgery. The margins were clean as well. Unsurprisingly, the nodule was Ewing's. This is officially my second recurrence. I had some nausea coming out of the surgery, and I did throw up once, but other than that I did pretty well in the hospital afterwards. I was discharged the following day. The six hour drive home from the hospital wasn't fun, but we got home after a few breaks. As for the trial, I did not make enough vaccine to get to the random selection phase, so I'm out. I made 3 vials, so the nodul...

Last week I was at the Cleveland Clinic.  All of the testing went well. My pulmonary function tests were all normal. On the PET scan no spots showed up (the lung nodule didn't light up because it's too small for a PET scan to pick up). Also, on the CT scan my lung nodule didn't grow. This pattern of growth is not typical for Ewing's. My oncologist told me that my case has been brought up at some of the sarcoma conferences he's attended. He thinks my immune system has been keeping my disease in check, and that this immunotherapy trial could make it even better. At this time, he believes my prognosis is favorable. I got some more clarity on the trial. Here's the flow of events that could happen. First, I will have the nodule removed from my lung. Then, Gradalis (the drug company responsible for Vigil) will try to make up to 12 vaccine vials for me with those cells. If there are less than 4 vials made, then I'm already out of the trial. This could happen if t...

The whole situation with this trial has been really frustrating. It was originally supposed to begin at the start of July, but got pushed back a month. Now the trial has been delayed a few more weeks. Currently, I am scheduled to have my scans and pre-testing the week of 8/20. Then, I'll have surgery the following week. The trial keeps getting delayed because the facility used to make the vaccine needs to be updated to meet FDA code. It is a lengthy process to become Phase III ready. I'm so stressed out right now because there is so much uncertainty, and so many ways things can go in the next few months. We are certain that this nodule is a Ewing's recurrence, but we are letting it continue to grow/spread unchecked for months. I am worried about the upcoming PET scan. I was very skeptical when I didn't have a PET scan last summer. I'm relieved to get the rest of my body checked out, but I'm afraid of finding other spots. I'm worried that I will be placed i...

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 ...

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 oncolog...