Yesterday Don and I met with the triple negative expert, Dr. Nanda, at University of Chicago. She is a nice young lady that seems to know a lot about the disease so that was comforting. She talked to Don and I about 2 different trials that she thought might work for me. There are a few more steps for each that need to happen to confirm qualification. The first trial is not an FDA approved drug, but it has been in a trial phase for melanoma, lung and head and neck cancers and showing good outcome so now they are trying it on triple negative breast cancer. In order to qualify for this my tumor has to suppress a certain "something" (Sorry, Amber terms!) She explained that 60% of Triple Negative breast cancers do suppress this. Also to qualify, I must have a measurable tumor for them use to confirm the treatment is working or not working. This is an intravenous drug given every 2 weeks and I would need to go to Chicago for the treatment and appointments. (Not that this is bad, but it is not close to our house, and is a bad neighborhood and is HUGE so I feel like a treatment would take all day rather then the 90 minutes they state it lasts.) The 2nd trial they need to test my tumor to see if it suppresses "something" Not the same something as the one above! Only 10% of Triple Negatives suppress this. This is a FDA approved drug used for prostate cancer, but is considered a trial since it is not approved currently for breast cancer. This is an pill that is taken daily. Both trials would require scans every 2 months to confirm the work of the drugs.
So the next step is they will request from Northwestern my tumor slides. They will send them off to be tested for the specific "somethings" and then get in touch with me. This could take a few weeks. In the mean time, she recommended that I start a chemo drug called Xeloda. Xeloda is given in a pill form and is taken twice a day. (4 pills in the morning and 3 at night) I would take this for 2 weeks straight and week 3 is continued a "rest". on week 3 I would also meet with the doctor for them to view my skin to see if the redness and dots are going away and also for them to feel the lymph node in my collar bone area to confirm it is shrinking. I would also have scans every 2 months to check to make sure nothing is spreading. The time frame of taking Xeloda is unknown.
Dr. Nanda explained to me that we are not trying to prevent my cancer from coming back, we are preventing it from spreading. This was hard to hear, because last time it was you have 16 rounds of chemo, then surgery and then radiation and you are done. This time, not so much! The goal at this point is to find the right drug to stay ahead of the cancer. The chemo may work and the cancer may disappear, but there is not a way to rid myself for good (it sounds like) of cancer. This is scary because eventually my body could become resistant to this drug. She did explain that there are plenty of other drugs to try and we are not at the end of our rope....It is just going to be a race to stay ahead of cancer cells. I may not be a sprinter, but I will sprint through this and beat cancer. It will not win this race!
Since I really do not want to drive to the city unless I have to, we agreed that I will see Dr. Nanda's associate, Dr. Phillips, who works for the University of Chicago out of the hospital by my house. Before starting to Xeloda, I will need to see Dr. Phillips so she can view my skin and get an idea of the size of the lymph node so she has a base line for appointments after stating chemo. Everyone is working with me to get this appointment scheduled as soon as possible. So hopefully within the next week I will be starting chemo, but it will not require my veins at this point! Oh and I will not lose my hair either!
Once my tumor testing is back, I will then meet with Dr. Nanda again to decide if I want to stay on the Xeloda (Assuming it is working) or if I go off of that and go on one of the trials. This is going to be a huge decision. Do I stay on a drug that is approved and is used daily to kill cancer cells, or do I try a drug that isn't approved but is showing some promising results....So pray again for us. All I see is opening up a door and the fear that we pick the wrong door....All have their pros and cons and this will be hard, but there is a chance still that my tumor will not have what they are looking for and I won't qualify, or they will decide that my lymph node is not considered "a measurable sized tumor". In that case, the decision will be made for me.
Lastly let me share with you just how lucky of a day yesterday was. When the hospital called to confirm my appointment for yesterday the nurse I talked to told me to do valet parking when I arrive. She stated that the first visit they cover the valet since I am a new patient. In typical Amber fashion I said "wow, free parking, I have cancer but I can park for free!" I laughed and her not knowing me, laughs a little, but I could tell she really didn't know what to say to that. Yesterday when meeting with Dr. Nanda's nurse we were discussing whether my tumor was considered measurable or not. So she said that is good, you might not qualify because your tumor isn't large enough....Again I still have cancer, so I say "well between not having enough cancer and free valet, this is a pretty good damn day!" My mom and I decided I should play the lottery. Sorry, this situation is not funny AT ALL, but I have to find the humor in anything I can. If I can't laugh through this, I don't want to play!
We will keep you posted, until then, prayers please that my body LOVES Xeloda and kills this cancer once and for all. Prayers for our decisions that we will need to possibly make these next few weeks and finally for my family! I know this is not about just me. These decisions impact everyone. Everyone wants Amber to be here until she is 90. The weight has to be taken off of all our shoulders and given to God. I feel that I have 60% done that, the other part still wants to try to control the situation. I'm slowly realizing though that I can only do so much.