It’s Been a Rough Couple of Months

It’s been quite a while since I updated my blog, the reasons for which are below…

The past two and a half months have been among the most difficult of my entire life. On October 23rd Tina and I met with my oncologist, Dr. Phinney, to get the results of the latest CT scan, which were unfortunately anything but good. My cancer was fighting back with a vengeance and the FOLFIRI and BBI608 was no longer working.

The CT results were very sobering: As for my lungs, the largest tumor in my left upper lobe, which appeared for the first time in the scan I had in August, decreased in size by about 20%. Unfortunately, all the other tumors and nodules grew, many even doubling, or more, in size. I also had several new nodules that measured as large as 1.9 cm, which were not present in my scan two months prior. The scan of my abdomen and pelvic area showed that the two lesions on my liver, one of which was first seen in the August scan, had both grown significantly, almost doubling in size. I also had two new lesions that have formed on my liver, which measured 1.0 and 1.2 cm in size. Lastly, I now had a couple of lymph nodes that were affected, the worst one measuring 2.1 cm, with subcarinal lymphadenopathy present.

Because of these results, I was immediately dropped from the clinical trial and was told that we would not be continuing with the FOLFIRI. Having exhausted all of the first line treatment options and a clinical trial, and knowing that second line treatment wasn’t available, we briefly discussed the last two options of conventional chemotherapy that were available. After doing so, Dr. Phinney recommended that I go to the Karmonas Cancer Institute in Detroit, Michigan to see what they had available in the line of a clinical trial, as they are one of the largest hospitals in the country with the most concurrent clinical trials running. At this point Dr. Phinney told me that, because of the aggressiveness of the cancer, he believed that I was looking at six months to a year to live. This was down from the three to five years I had initially been told just about a year before.

After we left the Toledo Clinic Cancer Center on the morning of October 23rd, I completely understood what Dr. Phinney had told us, but it still took a full day or so for me to fully comprehend what those results meant. The fact that my doctor believed that I was looking at quite a lot less time than originally thought did not really hit home for me for even longer.

After about five weeks of waiting and then running back and forth to Karmanos for the initial consultation and several rounds of testing, we were told that I was being offered to join a clinical trial. While I had some real concerns and an overall bad feeling about it, I signed the paperwork, partly because there wasn’t anything else available for me that made sense and mostly because I could see the hope in Tina’s eyes.

Later that same day I told Tina that I had signed the paperwork for her, and explained my concerns and bad feeling. The next night Tina called me from work to tell me that she had spoken to a good friend and realized that she needed to be there to support me, not push me into treatment. She then told me that she would back me on whatever my choice was, and wanted me to do what was right for me, not her.

During this time I also began to have a real problem with a very persistent and productive cough. I went through a couple rounds of antibiotics and steroids and didn’t see much improvement, so my pulmonologist, Dr. Ruiz, scheduled me for a bronchoscopy on November 21st. Prior to the bronchoscopy I had another CT scan, and Dr. Ruiz than looked at my lungs to see if I had an infection or fungus growing, and also get a couple of biopsies. The end result was that I did not have an infection, there was no fungus, and the biopsies came back as colon cancer, thereby proving the stage four diagnosis.

I met with Dr. Phinney again on December 5th and discussed with him at length, over the course of more than an hour, the options that I had:

  • The clinical trial at Karmanos, which had never been tested on humans and I was told had about a 10-15% chance of working
  • Lonsurf, which is an oral chemotherapy, that I was told typically had about a 20-25% chance of working, but probably significantly less for me

Dr. Phinney recommended the clinical trial as the best choice, telling me that he felt like it had a better chance to help then Lonsurf. He also told me that the results of the CT scan done during the bronchoscopy showed “significant and aggressive growth” in my lungs when compared to the CT scan on 10/22, just about a month before. He then offered that, without chemo or a treatment that worked, he thought that I had about three to six months to live, though it could be quite a bit less. He then added that I could made it as long as a year, because other than the cancer affected organs I was in good general health, but he wasn’t very hopeful. I thanked him, left to head back to work, and really began to think everything through.

I spoke with an incredibly good and spiritual friend from church, Paul Beauch, the following morning over breakfast. I then spoke with my psychologist, who is a cancer survivor and specializes in working with terminally ill people near the end of their life, during lunch the same day. I told both of them the same thing that I had told Tina: I don’t want to go out feeling miserable from chemo, especially with the real likelihood that it wouldn’t do much to help me. Both Dr. Phinney and the doctor at Karmanos had already told me that even if we found a chemo that slowed everything down, we were probably realistically looking at extending my life by a matter of weeks or months, not years.

So, that night and over the course of the next few days, I told Tina, my kids, parents, and a few friends what I had decided, which was to not do any treatment. I wanted to feel as healthy as possible for the holidays. I wanted to be my normal, lighthearted and happy person with my family and friends. I wanted to enjoy my life, choosing quality of quantity. It’s not that I was quitting the fight, it was that I was changing what I was fighting for.

I did say that I would be willing to reconsider Lonsurf after the first of the year, when the holidays were over, and last week I agreed to give it a try. I just spoke with CVS specialty pharmacy to complete my twenty minute intake over the phone, so they can ship out the prescription, which has already been approved by the insurance company. I will receive the Lonsurf this Friday, January 19th, and will likely start it the following day, after I speak with Dr. Phinney. Dr. Phinney, Tina and the rest of my family know that I am willing to stick with Lonsurf as long as the side effects aren’t too bad. If they do end up getting bad, or my health continues to decline and we are seeing no momentum, they all know and understand that I will quit taking it.

I can honestly say that I am feeling a drastic difference in my breathing and have had much more difficulty in the past month or so, as a well as a very heavy and productive cough. So much so, I am doing breathing treatments with my nebulizer at home at least one time daily, and I have also been using my inhaler at work almost everyday, sometimes more than once. I have also been taking a new cough medicine with codeine in it at night, just to help me not cough as much, as I was waking up multiple times nightly. For now, everything else with my health is good, and I am not in any pain or having any other difficulties.

Tina purchased Essiac tea and CBD oil for me, both of which I started about two weeks ago. We aren’t real sure if either is going to help, but at this point, why not try it?

I have another CT scan scheduled for this Friday, January 19th, and will have the results early next week. Because it is not going to be anything good, and we all know to expect that, I am going to call Dr. Phinney and he is going to explain the results over the phone (I’ll already have them via the My Chart portal from Promedica on Monday or Tuesday).

For now, I am going to see how Lonsurf treats me and get the rest of my affairs in order, for the inevitable outcome. That includes as much time with my family and friends as I can manage, continue working for the foreseeable future, and we have planned a couple of vacations for Tina and I to get away and spend some more uninterrupted time together. I may not have a lot of time left, but I am for certain going to make the best of what I have.

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.