Navigating uncharted territory…

Cycle #1 of the study drug is officially done and I am now starting the 2nd one. I must admit that cycle 1 hit me harder than expected and I think harder than my team expected. When going over the potential side effects before I started the study, I was told that most people had minimal symptoms. Fatigue, headaches, and fevers were the most common ones. The consent form did mention lowered white blood counts and platelets and elevated liver enzymes and so when I had all the symptoms above I was not worried. In my case though, I have also had pretty intense waves of liver pain. The pain would last a couple of days and be accompanied with fevers but then it would dissipate. I know my doctor was concerned and I loved that he was always an email away and would always respond promptly to my (sometimes neurotic) messages. When I came up for the week 3 blood draw, he ordered an ultrasound of my liver but I knew it would not tell us much, ultrasounds can’t see much on the liver. At least they were able to rule out an abscess and saw that my liver was a little enlarged but within the normal “upper limits”. My energy level has been pretty non-existent and this has been quite frustrating for me. Even during my toughest chemo treatments, I always seemed to bounce back but this time I was not seeing the end of it. According to the protocol, the first scan was scheduled for August and we had to decide wether to scan earlier or wait. The dilemma is that when you are in a study and they see progression on a scan “progression” from the disease (i.e tumors growing), they kick you out of the study (typically with 2 consecutive scans showing progression). The tricky part here is that the symptoms I have been experiencing are exactly the same symptoms as disease progression (fatigue, fever, pain). As I mentioned in a previous post, the fact that I had radioembolization to my liver right before starting the study is blurring the whole picture. When I say I am navigating uncharted territory, I mean that I am trailblazing here. We have no data to compare this with, no one had radiation to their liver right before they entered the study. As I also explained, we have been thinking that this may be in my favor as we know that radiation and immunotherapy can synergize and boost each other’s effects. So what I am experiencing *could* be a good thing.

I met with my doctor on Tuesday as I was being re-admitted for cycle #2 and we had a long discussion about this. My cancer marker came back significantly higher and it even took me by surprise. I knew it was a possibility but the fact that it had tripled really cut me off guard and had me in tears. I was able to pull myself back together to continue discussing the best plan of action. I must say though that inflammation can make this marker go up so it was not really giving us anything tangible to work with. We all agreed to go ahead with the scan. The caveat though was that the scan might not be able to tell us much more. If the spots were bigger, there was really no way of knowing if they were bigger due to inflammation or progression! Ugh! I wish medicine was more like mathematics with black & white, clear cut answers! What I really wanted to know was if there was anything “new” either on the liver or lungs or elsewhere as well. My doctor then explained that the biopsy I am scheduled to get next week *might* be able to elucidate us more. If they find more T cells in the tumor tissue (from the baseline biopsy) this will be in favor of the drug working. I also want to mention that in many other immunotherapy trials, researchers have seen tumors “swell” before they “shrink” and that it can take a few cycles before they saw clear evidence of the drug working. Of course I do not want to continue a treatment that is not working but how much time are we willing to give it to see if it works? What if by fear we stop when it could have worked and when do we continue and make things worse? eenie meenie myney mo…

I had the scan done Wednesday and my doctor said he would do all he could to come back and see me at the end of the day. When 5:30 pm rolled over, I thought I would not hear back from him until the next day. I was really shocked to see him show up at 6:30 pm with the nurse practitioner. He still had not seen the report but had taken the time to look at the images and compare the scan with the one I had one month earlier. His take on the whole thing was that “all the spots had grown” but more markedly on the liver. He still indicated that the inflammation hypothesis was not off the table. I had to make him repeat these words and then I was able to start to breath more easily again. Despite the scan, we were still in the dark. He agreed to discuss this with my Shands oncologist and we had my disc overnighted to Dr. D. who had done the radiation beads procedure. I believe that Dr. D. knows my liver best and not every radiologist truly understands the radiation procedure so interpreting the results on my liver is very difficult. I surprisingly remained pretty calm and composed and slept pretty well! I flew home yesterday and finally heard back from Dr. D. He is in the same position as all of us, not truly understanding what we are seeing. Most importantly, what I got from his impressions was that 1) there was nothing new (no new growths on the liver, lungs and anywhere else), 2) yes the spots on the liver are bigger but the way he described it in laymen’s terms is that the spots didn’t have the typical “symmetric” appearance but they rather appeared “patchy” (this could be a good sign), 3) the lungs nodules are still super small and he can’t tell on a CT how much necrotic tissue there is, 4) we both agreed that this not how the cancer has typically spread in my body in the past, typically when I had progression, new spots showed up. He agrees that a biopsy is the way to go. I hung up the phone feeling optimistic and hopeful. We know the biopsy may again leave us in the dark but the more data we can gather the more chances of getting an answer we will have. I am flying back Monday morning and coming home Wednesday late evening. Time to chill home with my boys, hubby, and sissy who is here helping us out!

To be continued!


3 thoughts on “Navigating uncharted territory…

  1. Rachel, Oh wow. You are amazing to face this. I didn’t know that the cancer had spread and it sounds as though you will head back up to DC and come back next Wednesday? If you are not up to meeting, no problem. If the boys want to come over and swim (although they haven’t seen us in a year) we would really enjoy it. Mark was asking to see them. I am here until 28 July so if there is any running around you need, or something picked up for you because you are too tired to go out, just call. I’m really close – Second Avenue (south of Ocean Ave). 616-304-4691

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