Friday, April 11, 2014


A lot of people have expressed curiosity about the new clinical trial I am participating in. It's definitely pretty interesting, so I would like to share what I know. Essentially, this drug is different than traditional chemos. Traditional chemotherapy goes after attacking the cancer for you. But it can be also more toxic to healthy cells as well. That's why there are such harsh side effects and why certain drugs have maximums. while they go after the bad guys, sometimes the good guys get whacked as collateral damage. So why is anti-PD-L1 different? Well, it probably makes sense to first explain what PD-L1 is in the first place, and then what the "anti" part is all about. PD-L1 is a protein that is found on the outside of tumor cells. It kind of acts like a protective coating. It renders the tumor cells somewhat invisible to the immune system. It was also described to me as a protein that puts the immune system killer cells to sleep when they come near it. The Anti-PD-L1 basically attaches to the tumor cells and flags it for the immune system, so it knows that the tumor is a bad guy and the killer cells should go after it. I described it to my husband as basically slathering up the tumor cells in barbeque sauce or something like that, making it more appetizing for the immune system. So the more PD-L1 you have in your cells, the more effective the anti-PD-L1 will be. As far as the regimen itself, it is given every other week through an infusion. Because it is not cyto-toxic, the side effects tend to be very mild. My experience is I feel a little funky, but nothing to write home about. It is definitely WAY better than chemo! From what I am hearing from people in the medical and pharmaceutical worlds, if the drug works on a person, it works incredibly well. They say results are rapid and durable. Certainly a good combo! In the land of advanced cancer, stable tumors are good news... In this new world, they are not only seeing stability, they are actually seeing tumor shrinkage. It has even taken some severely advanced cases right into remission! Pretty amazing! Like anything else, it doesn't work for everyone and it doesn't work on every kind of tumor cell. So now, we wait, and we pray that I am one of the lucky ones. It's in God's hands now.

Thursday, March 13, 2014

and such is the roller coaster ride we call cancer.

I had my most recent scans earlier this week. My doctor doesn't usually like to go through that stuff over the phone, but I told him I wasn't capable of waiting a week. He agreed to call me when he had news. So the waiting started Tuesday. When I realized I would have the results quickly, the panic started. You learn that anything is possible with scans. That's the reality. Good news, bad news, in-between news... Anything can happen. Steve was sitting next to me when the realization hit that I would know soon what the last three months has done for or to my body. He looked and me and said "take a deep breath". I looked back and said "I have to breathe first... then I can take a deep one". Fear is like that. It can literally knock the wind out of you. But breathe I did. So yesterday morning, as I was pulling into my son's daycare, the phone rang... Hackensack... Shit! I couldn't answer it there. My oncologist is important, but getting my son safely to school and not having him with me when I have the potential conversation is more important. Sorry Doc. I love ya, but the kid comes first. So I ignored the call at the moment. I waited until I was safely in my office at work with the door closed. I called back... He answered, and I could read in his voice that not all was perfect, but it didn't sound too devastating either. He said "this is a good news/bad news call". ok... I never like the bad news, ever... but the fact that there is some good news sounded promising. He proceeded to tell me the good news. The CT scan was no longer detecting the previously seen lung spots. ("what??? did he just say what I think he said?") Then he proceed, "the bad news is, it looks like the liver is getting worse. no new tumors there, but what we know about is growing a bit." ("shit"). So the rundown is this: The lungs are substantially better according the ct scan. the report actually said that they had resolved... i.e. undetectable! We keep our fingers crossed that the pet scan well agree with that assessment. I have learned never count all of your chickens before they are hatched. The liver is pissing us off. (which really is irritating considering I haven't had an alcoholic beverage in over a year and not even a single Tylenol in over 6 months... So I didn't even earn that. sigh) He wants to have an MRI of the liver done so that he can get a better look at it and see what is going on in there. In other news, the lymph nodes have reduced in size, which is always a good thing. and my tumor markers (think of them as kind of like cholesterol for cancer) went from 1800 in November to 1300 in January to 1000 on Tuesday... so that is a good trend. Also notable, the liver function tests are reading pretty much normal at this point, so that's a good thing. There's something in there, but it's not messing with things too badly. Overall, some pretty decent news. So what does it mean? well, we don't exactly know yet. I may be switching treatment again pending the MRI. This drug was pretty manageable, so it's always a bummer to come off of something that worked nicely and was reasonable with side effects. but if it didn't totally work, well then it may be time to move on. plus, we always can go back to navelbine if need be. I am grateful for the help it has provided to me thus far. Here's the deal. Metastatic cancer is a rollercoaster ride of grand proportions. It makes kingda ka look like the kiddie rides on the boardwalk. It can be scary, thrilling, nauseating, gut wrenching and joyful, and is as unpredictable as can be. You hang on for dear life, and keep on fighting. That's really all I can do.