We met with Dr. Garland to discuss Derek’s options. She made it clear that although the Carboplatin, Alimta and Avastin had created a slight decrease in the primary mass in his right lung it wasn’t good enough and there was further progression of the cancer in other areas. She had been working on the options. She also thought it was curious that there had been a “mixed response”. She explained that the NSCLC could have mutated into a small cell lung cancer. I didn’t even think this was possible! And she told us that each of the metastases could have their own histology. This was all new to me. She had been thinking a lot about Derek’s resistance and his success on the Tarceva. She thought that the best options would be trying to figure out the resistance. She had three viable options for Derek:
1) Ariad pharmaceutical is currently running a trial at UCSD that addresses T790 M Mutation. It is an expansion trial so there is a possibility with the expansion they will allow Derek into it. But they would need to re-biopsy to see if he has that mutation.
2) A study here at UACC with a standard chemo called Docetaxel and the combination of EC145 with the Docetaxel. The study is of a drug attached to folate which is taken up by normal cells and cancer cells. This drug is a chemo drug, very potent, tagged to the folate which means it will get taken inside the cancer cells.
3) Abraxane, similar to Taxol in a newer formation that is weekly. It is another chemotherapy.
The first thing to be done was to get another biopsy for Derek to see if he matched any other mutation. Then we could decide what the next step would be. Dr. Garland had a lot of things to do before we could move forward.
Dr. Garland showed us the PET scan. He had metastases to the spine, femur, hip and sternum. He also had new lymph node activity throughout his body. The primary tumor had shrunk and now his largest tumor resided in his right adrenal gland. Dr. Garland thought that might be the best spot to biopsy. She showed Derek the tumors on his spine so they could evaluate whether Dr. Stea might be able to radiate them. They weren’t close to the spinal cord so it was possible.
Derek was much more hopeful after meeting with Dr. Garland. At least there was something possible to treat him. He had been talking a lot of dying but told me after the appointment “I’m just not ready to go yet”. I had been concerned that he was ready to give up so I was thrilled he was willing to keep fighting. Derek is still very healthy and strong with a lot of life left in him. As long as he was willing to keep going, we would figure out how to make that happen.
Following his appointment with Dr. Garland he went to UMI for his brain MRI. He will meet with Dr. Stea tomorrow to discuss the results of the brain MRI. It was all very overwhelming. We left feeling numb.
Derek heard from Dr. Garland’s nurse, Sandy, that Dr. Garland was working on Derek’s treatment plan but she couldn’t say what that was at this point. They were considering another chemotherapy treatment and possibly some clinical trials. Dr. Garland would meet with us on Thursday to discuss Derek’s options. She did ask him not to take his Dexamethasone, the steroid he takes preventatively for any allergic reaction to the chemotherapy drugs. So we knew he would not be on the current combination of the Carboplatin, Alimta and Avastin for Thursday.
Derek was very hopeless about the future. We knew that any drug or combinations of drugs would have less effectiveness than the ones he was on and generally have more side effects. The one Sandy mentioned was Abraxane which had high percentage of serious side effects. It was a weekly infusion for those with advanced NSCLC. We also looked up all the clinical trials at the Mayo Clinic that Sandy had mentioned and Derek was not a candidate for any of them due to active metastases in the central nervous system, specifically in the brain. Most clinical trials considered active brain tumors a disqualifier for their studies because the advanced stage of cancer would skew the results. We wondered what Dr. Garland could do. We knew that Derek would have to make some tough decisions about his options and the options were bleak
Derek didn’t want to wait for the phone call from Dr. Garland so he went to UMI and picked up a copy of his PET scan. He waited to show me the results until after Emma’s kindergarten graduation but I already knew it was bad news. I tried to stay present at Emma’s graduation but tears were streaming down my face. Emma’s graduation was so sweet. I couldn’t believe she was already graduating from kindergarten.
Derek and I drove to Bruegger’s as he shared the PET results. His results indicated “further progression of the disease”. He has additional bone metastases in his spine in two different areas and he has a lesion that had come back from September on his right femur. He also has additional lymph node activity in numerous places throughout his body. The only piece of “positive” news from it was the originating mass in his right lung is showing a “mild decrease”.
I had to get back to work. I texted some of family & Erin but couldn’t talk. This was our new normal. I just kept telling myself to stay steady. It was like trying to stand up during a Tsunami and move forward. Derek didn’t feel like talking to anyone. After I brought the kids home we told them. Emma fell asleep on Daddy’s chest, which was perfect. Gabe said “Ok”. I called some family members. I didn’t feel like talking but knew they needed to hear from us. We just snuggled on the couch all night besides dinner. We fed the kids but Derek and I didn’t have much appetite. The kids seem to mirror our own mood. There was little comfort that could take away the pain or steady this storm.
Derek had his PET scan first thing in the morning, 2 hours of waiting. We waited all day without a call from Dr. Garland or Sandy, her nurse. We knew it wasn’t going to be good news if there was no phone call. We tried to go about our day with work and school and just not think about it. By 5pm we knew we weren’t going to get a call. We all went to Tu Nidito. I found it hard to be there. I found it hard to be anywhere. We struggled not to make up the worst.
We were anxious about the PET on Monday. Derek wasn’t allowed to do any vigorous activity 24 hours prior to the PET. Generally exercise helped to reduce the anxiety, but he couldn’t participate in anything that would reduce it. Luckily, Dorothy came down from Phoenix to visit which was a refreshing distraction. Because the scan was on the following day it was getting harder not to think about the results. It was always so hard. We wanted to know the results but, we didn’t want to know unless it was positive. And, the stakes were higher this time. We knew the cancer was aggressive enough that Derek didn’t even make the average of the effectiveness of the Tarceva. We were awaiting results of whether this 2nd systemic treatment was working.
We had all the normal things to deal with in life, plus the cancer. It was easy to get overwhelmed and Derek and I were both feeling overwhelmed. It was an incredible amount to handle and this week would be challenging to balance work, school, the kids getting out of school and all the doctor appointments. Many times over and over I said the Serenity Prayer. It calmed my nerves.
Bernadette told us about the Me-One Foundation. The Me-One Foundation is a
“a non-profit corporation created to provide adult cancer patients and their families with an environment where they can be allowed to embrace life without cancer as the first and foremost thought of their every waking moment. The Me-One Foundation will provide families with activities and events to promote courage, hope, laughter, and enjoyment through CampChallenge. CampChallenge is a no-cost camp for families afflicted by cancer and in need of a place of joy and relaxation that will focus them on living life, and not fighting disease. By providing this haven of hope, we allow families to be victorious, even if temporarily, over cancer, and keeping life’s scoreboard at Cancer-Zero; Me-One.”
We contacted them and they said they still had openings for the CampChallenge. We thought it would be fabulous for the entire family! We started making plans right away. The kids were super excited! Thanks Bernadette!
Dr. Garland would be attending the American Society of Clinical Oncology (ASCO) Annual Conference at the end of May in Chicago. It was an important conference for the presentation of the clinical trials, results, findings and discoveries in cancer. Cancer research was moving at a rapid pace in the last few years and advances were being made in cancers that had not previously had much movement, like lung cancer. Dr. Garland would need to be aware of any clinical trials that Derek could participate and or the treatment she could use with him if and when the standard chemotherapy of the Carboplatin, Alimta and Avastin were not working. We were always praying for as much time as possible with each treatment but knew the research results didn’t report much time for advanced stages of NSCLC. The results indicated only months of time, even though we often heard stories of a certain patient who was on a treatment for years. As always, we were praying for the best but having to prepare for the worst, which meant we had to stay abreast of the clinical research too. ASCO made that research very accessible to the public http://www.asco.org/. The current research would drive the treatment that Dr. Garland would choose. The course of treatment could be altered dramatically depending on the cancer research. I would imagine that for oncologists this was an exciting time and provided them with an onslaught of different treatments for their patients. For us, it was a matter of life or death.
We have always wanted Derek to be on some sort of immunotherapy, knowing intuitively that if the body could figure out how to attack the cancer cells that would be the best possible scenario vs. attacking healthy cells. But as we were figuring out things are not that simple. Immunotherapy inevitably changes the immune system, sometimes permanently.
Avastin is considered immunotherapy, one of the drugs Derek is currently taking. It is a monoclonal antibody, or in other words, a clone of a specific immune cell. An antibody gets the body to recognize that there is something foreign which creates a response by the immune system. Avastin is considered an angiogenesis inhibitor. Angiogenesis is the formation of new blood vessels in the body. It’s complicated but angiogenesis inhibitors interfere with the growth process of those blood vessels. A blood supply is necessary for the cancer cells to grow. The FDA has approved bevacizumab (Avastin) to be used with metastatic NSCLC as well as other advanced cancers. There are serious side effects with the use of angiogenesis inhibitors. For example, Avastin can increase your blood pressure and even after some patients stop the Avastin, the blood pressure remains increased.
There are also other immunotherapy treatments being developed but most of them are in clinical trial and are not currently available. There are numerous that are looking promising. Such as a drug called ipilimumab or Yervoy. Yervoy targets a molecule known as CTLA4 found on the surface of T cells. By targeting this molecule, Yervoy may create the immune system’s response against tumor cells. It was approved in March, 2011 for the treatment of melanoma. It is currently in a number of clinical trials with NSCLC.
But to put that into perspective, when one has advanced stage lung cancer it doesn’t matter what other serious side effects are occurring because essentially you are dying. Why else would you have your brain radiated? So, you accept the serious side effects. And while these “promising” treatments are fabulous for those not facing advanced stages of the disease, these new “promising” treatments are only prolonging survival rates in advanced stages of NSCLC. And if you examine the studies, the survival rates are increased by mere months.
It is a stark perspective, one that we failed to see with the Tarceva. Tarceva’s clinical trials only prolonged survival by an average of three months in advanced NSCLC.
Life had returned to as close to pre-diagnosis of Derek’s cancer as it had been in the last eight and a half months. I was working and building back my practice, Derek was back in medical school and we were struggling to balance it all. The kids were almost done with an entire school year and were excited about summer. So much of it felt familiar and comforting. We were just living, stressing about other things like summer camp and scheduling, laundry and grocery shopping, a dead battery, getting a jump start and the kids bickering.
I was savoring the break. I knew next week would be hectic managing the kids getting out of school for the summer, Derek’s PET scan, an appointment with Dr. Garland, blood work, infusions, brain MRI, and an appointment with Dr. Stea in between working and going to school. Then the following week would be post infusion side effects. At the minimum I knew he would be fatigued, very fatigued and the kids would be home.
Derek’s next PET scan was on Monday, May 20th. Derek and I weren’t sure how it got moved from 2 months to six weeks. It was something we just missed in the midst of the cancer metastasizing again and the change in treatment. We suspected Dr. Garland needed to check the Carboplatin, Alimta and Avastin treatment and whether it was having an impact on the NSCLC. We also guessed that because the cancer was metastasizing again she needed to check more often but we really didn’t know. We would know soon whether the chemotherapy was working. As Dr. Stea told us when I asked about how much brain radiation Derek could receive, he needs a systemic treatment that works so the NSCLC stops metastasizing.