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!
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.
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!
Thank you for being so open and honest with your journey. My daughter (17) is currently undergoing chemo for ES in her right femur and they plan to do surgery sometime next month in December. It helps a lot to read about your experiences, we can relate so much to the early journey. You are in our hearts and prayers, keep fighting ... and writing!
ReplyDeleteThanks for the prayers. I hope the surgery goes well.
DeleteHi Mike! Hope you are doing well. You must be done with cycle 2 now. Your last paragraph is very moving. Stay strong and positive, you can do this! Continued prayers.
ReplyDeleteI'm doing well now. I really struggled with nausea this time, so I'll be trying new anti nausea drugs next cycle. Thanks for the prayers!
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