What a busy past few days! Thanks to the kindness and help of friends, my trip to DC went very smoothly. I was picked up by the NIH shuttle at the airport and since I was the only passenger, the driver kept me entertained and offered all the tips he could about NIH. Upon our arrival to the campus, I had to exit the shuttle with my luggage and go through security and get a badge. The driver had told me how nice everyone was and how it was everyone’s goal to make our stay as “good” as possible. You never know what to expect when you are about to enter a governmental facility but I must say that I was pretty impressed. The shuttle driver even offered to drop me off at my hotel on his way to refuel the van, that was very kind of him.
My first day at NCI was quite challenging as I woke up with pretty intense nausea. This is not something I usually deal with and I was totally unprepared for it. I have a feeling it could have been the not so good sushi I had for late dinner the night before. Obviously it could have been stress but I didn’t really feel stressed out so who knows? The NCI building is huge and let me tell you, having to find a bathroom quickly when your sip of water is coming back up is not too fun… but I managed to survive the day! After all the paperwork, blood work, and EKG, I met with the study nurse practitioner. She too was really nice and compassionate and she even offered to get me some zofran for the nausea, what a relief! After going through all my history and doing a physical exam, the doctor came in.
Dr. H. is a young (well I would say probably around my age – so my kids would say “old”!), smart, and personable doctor. He seemed easy going and pretty laid back. He started off by asking me if I had any questions! I chuckled and told him that my oncologist had most likely not prepped him for me! I showed him my page long list of questions and we went from there! He explained in details the rationale for the study and what the drug was supposed to do. He lost me a couple of times but I think I did a pretty good job at staying with him and I think I asked a few pretty smart questions! (despite not feeling at the top of my game…)
There is no “perfect” trial because if there was such a thing, it would not be a trial but we would be talking about a cure. So we of course talked about the pros and cons of the study. I think I was bit taken aback to hear that the results had not been as promising as I thought they had been. My GI oncologist had mentioned the word “shrinkage” (not just stability) and this is something that I had gotten me quite excited. Dr. H. told me that they had seen stability but not shrinkage. They have only observed shrinkage in petri dishes and in animals, not yet in humans. This took me by surprise and at some point I almost felt like I was fighting back tears. I had travelled 900 miles for something that I thought had the potential to “maybe” put me into remission and then there, very matter of factly, I was told that this would not be the case. This lead us to discussing other ongoing trials for colon cancer with the specific mutations that I have and the bottom line is that there is nothing very exciting at the moment, although there many new trials in the works. There is actually another trial at NCI that is interesting but they are now closed for renovations of their lab and according to this doc, it will take a few months before it reopens, maybe even “many” months… The other phase 1 trial I was interested that closed actually just announced yesterday that they are skipping a phase 2 trial and are moving to a phase 3 randomized trial which should speed up the FDA approval of this combo. This was the talk of the town yesterday with everyone being super excited… except me… randomized means you may or may not get the combo. In this specific trial, there will be 3 arms so it would basically be 33% chance of having the combo AND the worst part (in my mind) is that you also have 33% chance of receiving a drug that I have officially crossed off my list. The side effects are horrible for very little benefit – actually a paper came out a few months ago and it said that it had “no added benefits”. If I was not in need of this combo in the immediate future, I would be thrilled like everyone else but I need it sooner rather than later so for me this news sucks… a phase 2 trial would have been better… anyways I digress and let me come back to the trial I was just screened for!
Here is where it gets interesting despite the “no shrinkage”. As I said before, I like the idea of having a foot into the NCI system. If I enroll in the study, they will be doing a “fresh” tumor biopsy. For the purpose of this study, they will not be looking at specific mutations within the tumor, they will instead be looking at changes within the tumor from the study drug. However, Dr. H. said that they could keep some of the tissue and that he could send some slides to any other trial I would like and we even identified one that could be interesting.
About 30 patients have been enrolled in the study so far, with only 8 who had colorectal cancer. Of these 8 patients, only 2 have had a really good response (long stability, one has been stable for 6 months and the other 12 months). One patient with I believe prostate cancer has been at it for 18 months… A year of stability without chemo sounds pretty sweet to me! I also think that I have a few factors playing in my favor. 1) The initial patients who participated in the study were reportedly quite ill. As this is a “dose escalation” trial, these initial patients were given the lowest dose of the drug. I was able to find out that the dose that I will be getting is pretty much the closest to a therapeutic dose as it will get. So I think that I am overall in a better shape and will be getting a higher dose than the initial patients. Talk about being at the right place at the right time (for once)! 2) This is a bit more technical but when reading about the drug being studied, it explained how it binds to “necrotic tumor cells”. I asked Dr. H to explain what that meant and if that meant that it only worked if we had necrotic (dead) tumor cells. He went on to explain that all tumors have necrotic cells but he had the same thought as me. Since I just had the Y90 procedure done, chances are that my liver has quite a bit of necrotic tumor cells and there is a chance that this could boost the efficacy of the drug. I then asked what that meant for the lung nodules and he explained that it would have a systemic effect, meaning that the boost to the immune system would not be specific to the liver but to the whole body. 3) Lastly Dr. H indicated that he had seen cases of patients who had stopped responding to the drug and went back to prior chemo that had stopped working to find that it was working again. He believes that the drug could potentially “prime” the body to respond to other agents and especially other types of immunotherapy. So the more we talked about it, the more I saw the benefits of enrolling. Whatever helps keep me going! As an added bonus, I get to keep my hair a little while longer which to me is actually pretty huge! And finally, I will be monitored super closely and won’t have to fight my insurance to get the scans and procedures approved! That’s all good!
At the end of our meeting I asked what was left to check off the list to determine if I was eligible. They needed to get the results of the HIV and hepatitis tests and I was not worried about these 2 whatsoever! So the last thing that was really left was to make sure that I had a squeaky clean brain, meaning no tumors on the brain. I was scheduled for scans the following day. I naively mentioned that I had never heard of CT scans before used to diagnose brain mets. This lead to a long (and pretty anxiety provoking) discussion on brain mets. Typically colon cancer does not go to the brain but it happens (typically after having lung mets for a while). I have heard a few stories lately of people who ended up with brain mets, like my dear friend Kenny who has been my colon cancer buddy for the past year. I am still sick to my stomach thinking about how in March he made the trek to NCI from the other side of the country only to be told that they had seen suspicious spots on his brain and that he was not eligible for the trial he was trying to get into. With my luck these days, of course it had crossed my mind. Ever since I have heard of my friend’s news I have been wondering whether I should ask for a brain MRI but I have been too chicken to bring it up to my doctors. As much as I am not sure how many more bad news I can handle right now, I guess this would be the way to know for sure (and again without having to fight my insurance!). The next question was wether a CT or MRI was more appropriate. MRI is more precise but apparently they can also tell with a CT with contrast. Since there was no MRI available, we decided that a CT would do the job. I was almost relieved – maybe it’s better if they can’t see that well! haha! I had the scans done yesterday and made it home quite late last night with the understanding that I would know today if I was a candidate. I was so happy to be at work today, a much NEEDED distraction when you are waiting for a phone call that will tell you wether or not you have brain mets. I did pretty well until 3pm. By then, I had not heard anything and was starting to feel pretty anxious. I sent a couple of emails and said: “hoping that no news is not bad news…”. Finally at 4pm, I received an email saying “no news is great news”. You just can’t imagine how relieved I was, I was so ecstatic! Finally some good news after the streak of crappy news lately! Phew!!! So I am going back next week for the first dose and will need to stay for a few days for observation and monitoring.
Never been so excited to be a lab rat!