I knew I had been slacking on blog posting but didn't realize it had been over two weeks. . Sorry! I have been pretty busy though so I feel like I have a valid excuse - and it isn't because I wasn't feeling good which is great!
After the last post I started the liver med (8/18) and haven't had any side effects from it. After not even a week on the meds my liver levels went down by almost half! Pretty great news. They are currently still trending down but just not as fast as the first week, but moving in the right direction. When I started these meds I had been off of cancer treatment for about 2 weeks and my tumors had started to sprout in my neck once again. And they started to grow fast. First picture is 8/16, second 8/24, third 8/27.
As the tumors grow the more they press on nerves to then comes the nerve meds and pain meds. I had an appointment on the 24th with the neurosurgery radiation oncologist and messaged my general oncologists that morning and said that my tumors were growing like crazy and they should look at them while I am at my other appointment. Luckily they got me in and we decided we need to get me on a treatment asap. We decided to do a new CT scan and then have me presented at tumor board again that week. Tumor board is where my entire team (surgical oncologist, general oncologist, radiation oncologist and nurses as well as other people in the melanoma field) get together and discuss my entire past and what we should do going forward. It is a giant powwow with me as the focus. Apparently there was a very lively conversation about me and a lot of ideas of what to do and the best course of action. Now remember we have to still think of my damn liver and how it is responding to things. The end conclusion they came to is to restart me on the first BRaf inhibitors (Debrafanib/Mekinist) as I didn't have a liver reaction to this combo while I was on it. This will also shrink my tumors and reduce my pain. If all goes as planned it will give my liver some more time to heal and react to the liver meds as well as treating my neck (lungs and hopefully brain too). Then they suggesting that I meet with a surgeon to possibly have them removed once they get smaller so it is less invasive. As much as I don't want another surgery it may be good to get the "roots" of these out. Then after surgery I would follow up with radiation of my neck. This I am not happy about but at this point I have to put something aside and do all I can to fight this. I restarted the BRaf meds and the tumors started shrinking like crazy almost instantly, which means the pain started shrinking too. So great!
First picture is 8/27, second is 8/28 (Pretty crazy right?) and the third is 8/31.
As for my CT results, there was obviously growth in my neck. My lung tumors haven't progressed much if at all. There are still the 10 tumors, but they haven't changed much in size which is good. We also decided to postpone the SRS Radiation (brain radiation) for a couple reasons. One, I needed to get my pain under control and so we started these meds, and I can't be on them if I do radiation as it interferes somehow. Also we are still fighting insurance and the appeal can take around 30 days to get settled. I had a new MRI done and my brain tumor has grown by 2mm, so it is now 6mm. Considering how fast and large my neck grows (easily 5CM in weeks) this isn't much but it is still growth. We decided to be on these meds for 4 weeks and then redo my MRI and if it is still growing we will pause these meds and do the SRS (with or without insurance approval, we'll figure it out). The BRaf inhibitors have a 40% success rate of crossing the blood brain barrier so we will give it a couple weeks to do that and if it hasn't then we will treat the brain tumor with the SRS Radiation. The waiting will give the liver meds more time to work, will give the BRaf a chance to hit the brain and time for the insurance company to have some compassion and approve the radiation. As bad as it sounds to postpone treatment on my brain, it is actually in our best interest overall.
I have also started to taper down on the steroids again. If all goes as planned I will be fully off of them in two weeks. This girl is excited!
Wow, that was a long update! Hope you are still reading to this point.. if so, good job! I am going to be posting all the fun things I've been doing outside of cancer soon. And it is a lot!
As always, thank you for following this trek and all the ups and downs (not just the tumors!)
oxoxo
I was sent home with my port accessed.. that was an interesting conversation starter!
No comments:
Post a Comment