Cycle 1 Complete

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 VCU which is a drive downtown. I let the pharmacist at VCU know that I'll be there to pick it up on Wednesday right when they open, so in theory it should be mixed and ready for me to grab and go. I don't need to see the oncologist every cycle. I'll see him after scans every three months and also if I have trouble with tolerating treatment. My next scan is mid November.

As for the side effects from the chemo, it wasn't too bad this cycle. I had some fatigue on the last two days of chemo and a few days after. My blood counts were down from three weeks ago, but were all in the healthy range. I had some diarrhea for a few days after the chemo. The most noticeable side effect was the nausea which I had throughout the chemo and a day or two after. To reduce the nausea I took the chemo on an empty stomach, and before bed. I also took Zofran twice a day. One time prior to the chemo and the other after lunch. Next cycle I plan on taking either Zofran three times, or weaving a Compazine in there. I didn't take anything for the diarrhea, but I will take the Loperamide when it starts next time. I'm continuing with the high protein, and high probiotic diet. I eat a greek yogurt every morning for breakfast, and I'm eating a lot of protein for dinner. I'm also taking a supplement called Healios which was recommended by my oncologist in Cleveland. He actually created it. Helios helps the digestive tract recover from chemo. I'm supposed to take it twice a day for 10 days. I took it once a day for the first 7 or 8 days. I didn't take it as much because I wanted to see if I would really need it. I'll try taking it more next cycle. Maybe once a day for the 10 days this time. My oncologist said that the nausea and diarrhea should be about the same every cycle. The blood counts could get worse every cycle.

The main difference this next cycle will be that I will be working this time. Being able to rest while taking the first cycle definitely helped. I just went back to work this week so I'm getting back in the swing of things now. Hopefully the side effects are the same this cycle because I could work with that for sure. One big advantage to starting my cycles on Wednesday is that my last two days are on the weekend. I should be alright.

When I take the meds I need to wear rubber gloves to protect myself when handling them. I dispense the syringe of Irinotecan into half of a cup of cranberry juice. The taste is bad, but not as bad as I expected. My strategy is to alternate between a gulp of the cran-chemo and a gulp of cranberry juice. That's worked well. Surprisingly, I had a difficult time with the  Temozolomide pills. The pill has that chemo taste, and I have had a tough time every night taking them. The first time I put that in my mouth I had a rush of emotions dating back to when I had chemo before. The taste and smell is so distinct, and if you have had chemo you know exactly what I mean. I haven't really tasted the pills since then because I swallow it so fast. I'm still sometimes gagging when I'm taking them because I'm thinking about that horrible taste. I hope that I'll be better with the next cycle.

I have been wearing my Chemo Cozy when I take the chemo. I obviously don't need to wear it, but it helps remind me that I've been through chemo before and I'll get through it again. It's been tough these past few weeks with surgery behind me, and it's gotten worse having to start chemo again. This is my second recurrence, but with only having surgery last year it feels much different now. When I took the first dose of chemo it really hit me hard. At that moment it made me realize that I'm really doing this again.

Day 1 of cycle 2 is this Wednesday.
1 Cycle Down, 7 To Go!

Surgery

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 nodule was alive, but there just weren't enough cells there. I'm obviously very disappointed about this. I spent a lot of time researching, traveling, visiting, and most of all waiting for the trial to start. I could have had the surgery months ago and been halfway through my chemo by now, but I think it has all been worth it. I have another great oncologist working my case, and I won't have regrets about not trying to get on the trial. At least I won't have to worry about flights and hotels for the next 9 months. Also, it was a good thing that the nodule didn't really grow that much over the past year. An important thing to keep in mind is that there was no guarantee that the immunotherapy trial would have cured me anyway. There is no guarantee it will cure more patients than the treatment I will be receiving now. I will be following the study, and I hope it has great results. Maybe it will be FDA approved someday.

Recovery has been similar to last year. It was pretty painful to breath, cough, sneeze, etc for about a week after surgery, but the painkillers helped manage it. Currently, I have pain at the incision sites, and my lung is still swollen. If I breathe in deeply, my right lung feels tight. I've been pushing myself to keep moving, whether it is with short walks or activity around the house.

Today, I had an appointment with a new oncologist that I was set up with at Virginia Commonwealth University. The appointment went well. I really like him. VCU is only 20 minutes away from me and is a very well rated hospital. The plan is to do 6 months of the IT chemotherapy regimen. It will be 5 days every 3 weeks, and it will all be done orally. I'm hoping to begin chemo on Monday, but it may be pushed back another week due to insurance authorizations and having the drug available for me.

I'm both nervous and anxious about my upcoming treatment. I'm looking forward to beginning my chemotherapy, and being one step closer to getting better. With that said, the further I have gotten out from being on chemo, the more I have grown to dread going back on it again. I'm worried about the side effects of the treatment, and being able to adjust to combat them. From what I've seen some people have no problems on this regimen and some people have to go off of it because they can't tolerate it. I did well on the first chemo regimen, but that doesn't mean I'll do well with this one. Well, like everything in this journey, I just have to pray and hope for the best. I'll keep you all updated.