What a Week So Far!

My week started on Monday with an 8:00 appointment at the Toledo Clinic Cancer Center to get a physical and find out if I was randomly chosen to get the trial drug in the clinical trial that I got into last week. The physical existed of a few questions and a quick listen to my lungs, and I was then told that I was chosen to receive the trial drug, known as BBI608. I started BBI608 on Monday morning and take three capsules, twice daily.

So far the drug has not caused any nausea or extreme side effects, however the diarrhea that I was warned about has certainly hit me today. I am hoping that it is partly nerves, because I am admittedly nervous about starting my new chemo regimen (FOLFIRI) tomorrow morning, because I was told that nausea, diarrhea and hair loss are very common side effects. I don’t care about my hair, but nausea scares me badly, because of my back problems. If you have never had chronic back pain, from multiple injuries and surgeries, I will try to help you understand. Vomiting with back pain like what I have is a horrible experience and hurts very badly, honestly more than words could ever explain.

Actually, I guess I need to be fully honest about my nervousness with starting the FOLFIRI tomorrow. A lot of it is that I am not sure this is going to help and, since finding out that the cancer started coming back and multiplying, I am feeling less hopeful about the outcome of the fight. I have no idea if this is going to do any better that the FOLFOX did, which worked great for about 5-6 months, and that scares me. To compound it, there isn’t a lot left for me if the FOLFIRI and BBI608 doesn’t work. FOLFOX and FOLFIRI are the two primary treatments for cancer, and then they start looking at clinical trials. Since I am already in a clinical trial, if this doesn’t work, then I have to look for another clinical trial.

So I am quite nervous about seeing what the treatments with FOLFIRI and BBI608 will bring.

On a much brighter note, tonight I am heading back to Celebrate Recovery at Northpoint Church, and jumping back into the role of small group leader (I took a sabbatical shortly after I was diagnosed last year). The group is in need of another leader and I volunteered, because I want to help others who are struggling with addiction and other problems. Well, to be honest, I am also going back because when I was involved in it regularly before, I feel like I was in a better place both mentally and spiritually. And with all of the stuff going on in my life, I decided that I could certainly use some help keeping my head thinking on the positive side and I can always use assistance with staying spiritually centered.

Clinical Trial Process Underway

Tina and I met with Jennifer, the researcher at the Toledo Clinic Cancer Center, this morning to discuss the local clinical trial. After a brief discussion, and thinking about the fact that we don’t have a lot of options left, I signed the consent form. I then went to the infusion center, where they drew blood and I left them a urine specimen, which is needed for them to determine if I qualify for the clinical trial.

The last step on my part, which I am going to do at Flower Hospital on the way to work tomorrow, is for me to get an EKG test. Once Jennifer gets the results of my EKG, she will send everything to the doctors in charge of the clinical trial, and they will determine if I would be a qualified participant. From everything that Jennifer and Dr. Phinney have said, it looks like I should qualify without issue.

In a strange twist of events, Jennifer told me yesterday on the phone during our initial conversation, and again this morning when I asked her to confirm, that the clinical trial at the Toledo Clinic Cancer Center is not exactly a true blind study. If I am randomly chosen to have the trial drug, I will have to take them orally (pills) the two days before I have chemo, which will be every two weeks. If I am not randomly chosen, they apparently don’t give placebos, so I will not be given the pills. So I’m hoping that they let me in the study and I get to take some pills!

We are also still waiting to hear what Dr. Penney at the Cleveland Clinic Cancer Center has to offer in the way of clinical trials, but for now we are concentrating on getting into the one here as soon as possible. The last thing we want is for this damn disease to have any more time to spread or grow than it already has.

The Doctor has Spoken

Tina and I met with my oncologist, Dr. Phinney, this afternoon and got his take on the scan results that Promedica so kindly released to me last Wednesday. The long and the short of it is that it is obviously a setback and, while my interpretation of the results was pretty much spot on, we have a few different options to look at.

Dr. Phinney has already reached out to his colleague Dr. Pelley, the doctor that we met with at the Cleveland Clinic Cancer Center last year for a second opinion. Dr. Phinney has asked Dr. Pelley if the Cleveland Clinic has any clinical trials that I may qualify for, and we should hear back from him within a week or so.

If that doesn’t pan out, Dr. Phinney had a couple more ideas. The first is to switch my chemo regimen from FOLFOX to FOLFIRI. FOLFIRI has two of the same main drugs as FOLFOX, except instead of Oxaliplatin, it has Irinotecan Hydrochloride. The Irinotecan Hydrochloride has a higher likelihood of nausea, diarrhea, and hair loss and, while I’m not super excited about any of those side effects, I don’t have a lot of choice in the matter. Besides, there’s medication that I can take for the nausea and diarrhea, and I had a period of my life not that long ago where I shaved my head bald (with a razor) and liked it.

Dr. Phinney also has a clinical trial running in his office right now that is two armed, which means 50% of the patients get FOLFIRI and 50% of the patients get FOLFIRI and Napabucasin. The catch is, it’s a blind study, so if I am accepted into the study, I won’t know if I have been randomly selected for the FOLFIRI or the FOLFIRI with Napabucasin. I am supposed to get a call in the next couple of days by the researcher in Dr. Phinney’s office to get started with the paperwork and blood work and to determine if I qualify for the clinical trial. There is a great deal more information on the clinical trial that I will be trying to qualify for here.

In the end, it makes sense to get into the clinical trial at Dr. Phinney’s office, because even if I get randomly drawn for just FOLFIRI, we were going to try that next anyway. Dr. Phinney also said that if Dr. Pelley gets back to him with a clinical trial that he thinks would be better than the clinical trial that Dr. Phinney’s office is running, Dr. Phinney would recommend that I try to get into that one instead. We’ll probably know more about that in the next week or so.

So, the news is about what I expected after reading the scan results last week, but we have more options available than I ever thought we would. While this isn’t the way that I wanted this whole process to go, we aren’t sinking yet, and I am going fight with everything that I can to kick this cancer’s ass.

Oh, and a bit more good news: the clinical trial at Dr. Phinney’s office requires that you not have any chemo for at least three to four weeks, so I don’t have chemo this week, in hopes that I qualify for the clinical trial.

Lastly, I want to thank everyone for the thoughts, prayers and overall support through this whole ordeal, and especially this last week. I could never get through this on my own, and I cannot find the words to explain how grateful I am.