Sara 45 Genes 0 and getting the clinical trial ball rolling

I got some good news earlier this week. The research study that I enrolled my blood work came back. It tested 42 separate genes for breast cancer. All came back negative. For those keeping score at home that is 45 negative genetic tests. As the genetic counselor told me on the phone, we have ruled out all the known genetic causes, but still can't say with 100% certainty that all genetic factors have been ruled out. My reaction went down like this. "Yay!....wait a minute..." which means the cause of my breast cancer is most likely environmental. Let me be clear I am very very very happy that cancer is not in my genes as this means I get to keep my boobs and decreases the risk of recurrence. Now I just have 200,000 other causes that are not as easily ruled out with tests which leads to the crazy pants investigation into chemicals as previously documented. I found myself suspiciously eyeing my couch the other night and then even shouted at it "Damn you Scotchgaurd!". Living by yourself is much more entertaining than you would think.

Breast Cancer Vaccine
Today I had my clinical trial enrollment appointment with my oncologist. At 1 pm I went back down to the hematology/oncology waiting room. I surveyed the waiting room and all the very anxious faces.  One of the fantastic volunteers picked up that one of the woman was having an especially tough time with her appointments. She was there by herself and he just sat next to her and chatted with her to help ease her anxiety. He is retired and spends most of his afternoons as a volunteer in the oncology waiting room handing out snacks and clearly making patients visits much easier.  I really felt for these people and was happy their was a volunteer their to make their day a little easier.

The research coordinator's office is directly across from mine at work so she had come over to let me know about all my appointments and reminded me that I needed to give a urine sample she said they sometimes forget. To remind myself I wrote a sticky note and left it on my desk. Here is a mock up of the sticky:

Now because I reminded myself they needed urine I was waiting to have bloodwork and give a sample and there were 5 people ahead of me. My oncologist popped her head in and decided we would do the exam and consent before the bloodwork. I made it through the physical exam and preliminary questions when she handed me the packet of information to review that further detailed the clinical trial. This was a very important document and she could see me squirming in my chair and I finally asked "Do you need a urine sample, because I really can't read this until I pee!" Yes, another very proud moment for me and my over active bladder. The oncologist was great and got my sample cup for me so I could get back to signing papers.

Here are some interesting facts about the clinical trial. Only 100 people have ever received the vaccine. The study is double blind, but everyone receives an immune booster shot. If you are placed in the treatment arm of the study you get the vaccine (a specific peptide) that is in the immune booster. Also, the vaccines are done transdermally (like a TB test) and in your thighs! Weird. There is always a risk signing up for a clinical trial as the vaccine has been tested on very few people, but someone once tried the chemotherapy or radiation treatments that I had and I am thankful that they did. Also, they presented me with a schedule for the amount of tests and scans I have to do throughout the study and lets just say they monitor you very closely.

Tomorrow I get to be radioactive again! This time for a MUGA scan. This is a test to see if I am truly a muggle. Just kidding. It's a radiological test to look at how well my heart functions and make sure I do not have heart failure and see how efficient my heart works. I'll have it done every 6 months for the next 3 years to make sure that I am healthy enough for the trial.

Next week I'll have to have an EKG, bone scan, CT scan and skin test to make sure I am not allergic to any of the vaccine components. Having tests done when you are not anxiously waiting the results is so much easier and dare I say fun to see inside myself. But that's just the engineer in me who loves to see how things work!