Ok, I have finally typed up my update. So here it goes…

The night before my appointment with Dr. Armstrong, she called me and informed me that the trial that she was hoping that I would participate was not accepting new patients. She received an email earlier that day stating that the medicine that was being tested in the trail was having a shortage, thus new participates to the trial was a no go. Dr. Armstrong wanted to confirm that I still wanted to come in to meet with her the next day. Of course, I said YES. So, on Wednesday, February 3, 2016, I met with Dr. Armstrong at Johns Hopkins.

As with all my big appointments, Bob and my parents were there. We briefly discussed the trial that Dr. Armstrong and I discussed the night before. Dr. Armstrong said that she wanted to further research other clinical trials. Possibly there are others that would suit me well focusing on a slightly different attribute, a RAF inhibitor. Dr. Armstrong said she would get back to me on Friday, February 5, but I have yet to hear directly from her. This is disappointing. I have left messages for her at various numbers. Though, through talking with other doctors and nurses at Mercy and Hopkins, I have found out that Dr. Armstrong requested that my stored tumor tissue be tested for BRAF and RAS mutations by Mercy pathology. From what I understand these are in the same biological pathway. This testing was done at Mercy and I now know that the test results are negative. Not really sure what to think of that, but it seems to eliminate my eligibility from some trials that I was looking into on my own.

In my previous post I mentioned that Dr. Rosenshein was going to review my initial pathology report as possibly my tumor is of a slightly different type and another type of treatment may be better suited to help me. As it turns out, Dr. Rosenshein requested that a specific Mercy pathologist reviewed my pathology report and confirmed the initial diagnosis.

So where I now? I am now on Femara, which is an aromatase hormone therapy. I started taking Femara on February 9. Femara reduces the amount of estrogen my body produces. The goal of being on this prescription is to stabilize the cancer cells that are in my body. My tumor was tested as 95% positive for being estrogen receptive, so this drug seems to be a good fit.

On Thursday, February 11, I went to a National Ovarian Cancer Coalition (NOCC) survivor luncheon in Annapolis. This was a wonderful event and the first time I attended. I am so glad I was able to attend. I took notes from the discussion that I had with other survivors. I learned a lot.

On , February 17, I went to a survivor support group at the Wellness House of Annapolis. I try to attend this group as often as my schedule allows. I some suggestions as to how to remain proactive with my treatment plan and I am anxious explore them further. Later that evening, I even received some messages from a friend from group with some specific links to look into. This led me to meeting Dr. Amanda Fader.

On Tuesday, February 23, I had an appointment with Dr. Fader Johns Hopkins. I went to her specifically because I saw on-line that “she has a special interest in … low-grade serous carcinoma of the ovary….” Bingo, that’s what I want to get rid of, so I made the appointment. I was impressed, as I have been with each of my doctors. She made a few points that have stuck in my head and we are working through. Among them are two clinical trial recommendations and further genomic stored tumor testing. The first trial mentioned is the one that Dr. Armstrong wanted me to participate and we now know that it is not currently accepting patients. The second is one that I have recently pursued information about on my own. I was happy to hear it is highly recommended for me by a doctor that is familiar with my medical record.

On Monday, February 29, I get my routine bloodwork done at Mercy. I hope to talk some things out with my nurse and possibly meet with Dr. Rosenshein if he is at Mercy that day. In the meantime, I’m loving my family and doing “homework”. As always, please keep me, my family, and my medical team in your prayers. I am so thankful for all of you. – Stef