3rd Infusion and New Scans
It's been a while since I've posted. My last scans (CT scan of my body and MRI of my brain) were on July 31st and my last infusion was on August 1st. However, I was just barely able to talk to the radiation oncologist that has helped with my brain yesterday. I wanted to have a clearer picture before I posted an update. So here's the update...
As far as my infusion goes...it went well. For some reason it was taking them a really long time to get my drugs to me. Almost an hour I think. Normally it's about 20-30 minutes. But other than that, my body seems to be handling the infusions well. I've made it through 3 of the 4 scheduled infusions with the combined drugs. My fourth infusion is scheduled for August 22nd. Unless some serious side effects kick in between now and then, I'll get through all four which is great. After that, they'll drop me down to just one of the drugs and that will continue, I believe, for about a year. At that point, they'll reevaluate me and see where things are at.
So for the scans. Let's start with the body...
There are a handful of tumors that I have in my main body cavity. I have a tumor in my lung, which got a little bit bigger. I also have two tumors in my chest cavity that got bigger as well. However, all of the other tumors in my chest cavity and abdominal cavity/region got smaller. Apparently, most people don't see a response like that until 9-12 weeks after the first infusion. However, I am seeing a response just 6 weeks after my first infusion, which is very exciting! Unfortunately, not all of the tumors got smaller. If that had happened, we would have been able to demonstrate stability and could have appealed the insurance company for approval for targeted radiation on my brain. Hopefully by the time we scan again in September all of them will have responded and started shrinking. That being said, I have seen several tumors on the outside of my body shrink and many have even shrunk to the point that I can no longer feel them. Very exciting stuff!
The brain...
There was some mixed news as far as the brain goes. There were a couple of new small tumors, which would being the total I believe to around 15 or 16. A couple tumors got bigger as well. That would be the bad news. Again, my radiation oncologist suggested whole brain radiation as a possible course of treatment. I reiterated that I'm not interested at this point in doing so. The potentially good news is that it appeared that some of the tumors may be responding to the immunotherapy, which would be excellent news! I think we were told there's about a 30% chance the immunotherapy would help in the brain. So if we can get some help there by just doing the immunotherapy, that would be awesome! The other good news was that there was no sign of "leptomeningeal enhancement". In other words, there have been some signs that I possibly have leptomeningeal disease, but there was nothing new in my scan to further support that possibility. The radiation oncologist indicated that there is one area that it looks like it may me leptomeningeal disease, but that there were no signs of it in the areas that she normally sees it. So that, in my opinion, is great news!
You know, these trips up north aren't how I would choose to spend my time. I get poked and prodded a lot. I lie in tubes for extended periods of time. I get to have drugs pumped into me for hours while I sit in a chair. But I'm grateful for the love and support of my incredible wife and my loving parents. Being able to spend time driving up and back with my wife is invaluable time with her. She has been so supportive from the word "cancer" and I can't thank her enough and I certainly will never complain that I get to spend so much time with her on these trips. I'm also grateful that my parents are willing to take time away from work and home to sit at a hospital and support us in our journey. Heck, half the time I'm not even around! But they are always willing to be there.
This journey has brought me closer to my wife and my family and for that I am beyond grateful. More importantly, though, this journey has brought me closer to God. I know He lives. I know He's aware of me. I don't know what this journey is going to look like as we move forward, but I trust in Him.
"Come What May and Love It" - Elder Wirthlin
As far as my infusion goes...it went well. For some reason it was taking them a really long time to get my drugs to me. Almost an hour I think. Normally it's about 20-30 minutes. But other than that, my body seems to be handling the infusions well. I've made it through 3 of the 4 scheduled infusions with the combined drugs. My fourth infusion is scheduled for August 22nd. Unless some serious side effects kick in between now and then, I'll get through all four which is great. After that, they'll drop me down to just one of the drugs and that will continue, I believe, for about a year. At that point, they'll reevaluate me and see where things are at.
So for the scans. Let's start with the body...
There are a handful of tumors that I have in my main body cavity. I have a tumor in my lung, which got a little bit bigger. I also have two tumors in my chest cavity that got bigger as well. However, all of the other tumors in my chest cavity and abdominal cavity/region got smaller. Apparently, most people don't see a response like that until 9-12 weeks after the first infusion. However, I am seeing a response just 6 weeks after my first infusion, which is very exciting! Unfortunately, not all of the tumors got smaller. If that had happened, we would have been able to demonstrate stability and could have appealed the insurance company for approval for targeted radiation on my brain. Hopefully by the time we scan again in September all of them will have responded and started shrinking. That being said, I have seen several tumors on the outside of my body shrink and many have even shrunk to the point that I can no longer feel them. Very exciting stuff!
The brain...
There was some mixed news as far as the brain goes. There were a couple of new small tumors, which would being the total I believe to around 15 or 16. A couple tumors got bigger as well. That would be the bad news. Again, my radiation oncologist suggested whole brain radiation as a possible course of treatment. I reiterated that I'm not interested at this point in doing so. The potentially good news is that it appeared that some of the tumors may be responding to the immunotherapy, which would be excellent news! I think we were told there's about a 30% chance the immunotherapy would help in the brain. So if we can get some help there by just doing the immunotherapy, that would be awesome! The other good news was that there was no sign of "leptomeningeal enhancement". In other words, there have been some signs that I possibly have leptomeningeal disease, but there was nothing new in my scan to further support that possibility. The radiation oncologist indicated that there is one area that it looks like it may me leptomeningeal disease, but that there were no signs of it in the areas that she normally sees it. So that, in my opinion, is great news!
You know, these trips up north aren't how I would choose to spend my time. I get poked and prodded a lot. I lie in tubes for extended periods of time. I get to have drugs pumped into me for hours while I sit in a chair. But I'm grateful for the love and support of my incredible wife and my loving parents. Being able to spend time driving up and back with my wife is invaluable time with her. She has been so supportive from the word "cancer" and I can't thank her enough and I certainly will never complain that I get to spend so much time with her on these trips. I'm also grateful that my parents are willing to take time away from work and home to sit at a hospital and support us in our journey. Heck, half the time I'm not even around! But they are always willing to be there.
This journey has brought me closer to my wife and my family and for that I am beyond grateful. More importantly, though, this journey has brought me closer to God. I know He lives. I know He's aware of me. I don't know what this journey is going to look like as we move forward, but I trust in Him.
"Come What May and Love It" - Elder Wirthlin
Comments
Post a Comment