Today I met with my oncology team to discuss what to do from here on out. My team is composed of two main people, Dr. Katie Janeway and Dr. Andy Place. Katie is the head-honcho, my attending oncology doctor and Andy, medically referrered to as the "Fellow" is my personal guru. Both of my parents came in today and the five of us found a big conference room to talk privately in. I was able to take a shower today and wash my hair so I decided to sit at the head of the table, because who wouldn't want to check out these lovely locks? I mean let's be honest here.
Anyhow, Katie and Andy brought in two things for us to look at: their recommendations for treatment and a possible clinical trial. The treatment would include radiation therapy and chemotherapy. My understanding of radiation is you lay on a metal table and they point some machines at the diseased sections of your body. There will be side effects to the radiation that will probably include nausea and skin irritations, etc. The radiation therapy would be every day, Monday through Friday, and would last 4-6 weeks. I've never undergone radiation before, so this'll be a treat!
Chemotherapy is typically given in cycles. A "cycle" is a period of time in which the chemotherapy is given. This new chemotherapy treatment will be given in 21-day cycles. The chemo will be given intravenously and also orally, in pill form. The IV (intravenous) chemo is given through my port. The port is an IV line that is surgically placed in my chest. It was placed last Friday during my surgery. My port allows me to recieve transfusions of platelets and red blood cells as well as my chemotherapy without the worry of my veins collapsing. I also only have to be pricked, or accessed, once every week. I will recieve the IV chemo on days 1 and 8 of each cycle and will take the oral chemo medication every day. One of the oral chemos is called mitotane, of which I've already been taking every day for somewhere around 18 months now.
The clinical trial presented to us was called the "Seneca Valley Virus" and is a phase 1 trial. Clinical trials are used to test and approve new drugs. There are four phases of clinical trials. In a phase 1 trial, doctors are trying to figure out what dose of medication a patient can handle and what the side effects might be. This trial seems promising for adrenocortical carcinoma, but I can't be in the trial and treatment at the same time, so I need to choose which one I will start with.
We've booked flights to travel to the University of Michigan Cancer Center to meet with Dr. Gary Hammer later this month. We'll check my treatment plan with him as well as gather new information. After that I will decide what my treatment plan will be and probably start it right after Christmas. What a wonderful present!
Last week this was all up in the air so I'm relieved we have a plan now! I think it is safe to say that today's meeting was a success. :)
What to do, What to do!?!? Looks like you have a LOT on your plate and a BIG decision to make, Leah. But if you have ANY questions about radiation, I've had to do it every time I've relapsed. So I can give you oodles of info from the "inside edge" about what to expect from that! Anyway, I was so glad to read that you got a PORT placed in your surgery....those are such a glorious treat I tell ya! Have you had one before? I would be LOST without mine! Take care girly, and if you have ANY questions about radiation, you know where to find me!!!
ReplyDeleteLove you Leah!
ReplyDeleteMy Mum who was experiencing weight gain, hair loss and acne, bouts of chest and abdominal pain and several months of unrelenting headaches that no medicine could relieve, In fact, it got worse. saw various doctors they decided that the lab levels indicated nothing much at all, until we met a Doc. who did CT scan, and she was diagnosed with adrenocortical carcinoma. So after one year, A surgeon advice was to remove her tumor, along with her left kidney. she needed to see someone with extensive experience in treating adrenal gland tumors for the next phase of her treatment. Knowing she needed to get an answer once and for all, we looked up on the internet and saw someone who testified about Aryan herbal medicine which she took and she had no more symptoms since then. You can also contact him if interested at
ReplyDeletedraryan500@gmail.com