Mets Day 880 - Second opinion on my treatment options

Today I met with Dr. Aragon-Ching, my clinical oncologist at GW. She is the doctor who has overseen all of my chemotherapy, and I respect and trust her options. Last week, I had sent her the following email:

I assume that Dr. Apolo has advised you of the results of my PET-MRI scan that I had on 9/2/14, which showed an increase in size in the supraclavicular lymph node (1.5 cm x 1.35 cm), with active uptake of the F18 flouride glucose, as well as enlargement of adjacent nodes.  I'd like to meet with you to discuss my treatment options.  My questions include the following:

1. Last November, when we suspended my dose dense MVAC after 3 rounds, we discussed the option of going back to it if the scans showed further growth.  In light of the 9/2/14 scan results, does it make sense to consider any further chemotherapy, and if so, what type?
2. Is it worth considering adding a taxene into a cisplatin-based therapy? If so, is that possible outside of a clinical trial?
3. What clinical trials, if any, would you recommend that I consider?
4. What would you do if you were me?

She arranged for an appointment today, and spoke with Dr. Apolo about my scans. I also did a considerable amount of research on pubmed.org to review the most recent literature on treatment of metastatic bladder cancer, and read about a dozen articles. A particularly useful article was Chemotherapeutic and targeted biologic agents for metastatic bladder cancer: A comprehensive review, published in January 2014 in the International Journal of Urology. It summarized the latest best practices, recent research, and many current clinical trials. Also of note was Optimal treatment for metastatic bladder cancer, just published (September 2014) in Current Oncology Reports.

I also researched articles regarding the possibility of having my metastatic lymph nodes removed. A June 2014 article in Clinical Geritouintology Cancer, Postchemotherapy lymphadenectomy in patients with metastatic urothelial carcinoma: long-term efficacy and implications for trial design, suggested that there might be a survival advantage for the removal of diseased nodes. Another article, Lymph node metastases in patients with urothelial carcinoma variants: influence of the specific variant on nodal history,from the June 2014 edition of Urologic Oncology, confirmed that micropapillary bladder cancer (the type I have) is the most common to have node positivity.

Thus prepared, I met with Dr. Aragon-Ching for more than an hour. She is one of the best types of clinicians -- when you meet with her, all of her attention is focused upon you, the patient. She is not rushing to the next appointment, or terse and abrupt in her communications. Instead, she willingly explored all of my questions, as well as the information from the articles that I brought.

She started by stating that, while she had spoken and traded emails with Dr. Apolo, she had not yet received a copy of my most recent scan. She cautioned me that the PET-MRI imaging is a new technology, and the fact that it measured my node to be larger than my prior CT scans did not necessarily mean that it had suddenly surged 30% in size in 6 weeks. Instead, she said it was possible that the clearer resolution of the new scan was just a better picture of what had been going on in that node for some time. (She also acknowledged that it was possible that, in fact my node had taken off in growth, although she said that would be atypical for a distant bladder cancer metastases.)

She also said that, when viewed in the big picture of metastatic bladder cancer that she sees every day, the results of this scan were no big deal. Her purpose was not to brush off my concerns, but instead to put into context what was happening to me compared to other Stage 4 bladder cancer patients. They may have multiple tumors of 3 cm or larger in their liver, or lungs, or other organs, and yet they are still being actively treated. I appreciated her message and reminder that it could be a lot worse.

Building on that, she said that she was looking into the future of the likely course of my disease, and that was strongly influencing her views on what I should do now. Dr. Aragon-Ching felt that my mets bladder cancer still was chemo-sensitive -- she believed that the reason why my mets BC was quiescent for the past year was because of the ddMVAC treatment that I had last fall -- and that my body could handle at least one more set of platinum-based chemotherapy treatments. That being the case, the question she was asking herself was, when was the best time to give me that course of chemotherapy. She said that other patients who had tumors in their organs could have their lives extended by having more chemo to slow the growth of those tumors. She said that it was highly likely that, at some point in the future, I also would have those type of distant tumors. She would rather keep the option of more chemotherapy in reserve for when I really need it. As far as what type of chemotherapy she would consider, she said that we'd cross that bridge when we came to it. She said that there were a number of options available, including carboplatin (instead of cisplatin), adding a taxene, and perhaps other drugs that could target the specific variants within my cancer.

That segued to the question of what actionable information could be obtained from the specific type of mets MC floating around in my body. Dr. Aragon-Ching said that we were still years away from personalized medicine, where each cancer could be run through a DNA scan and a specific therapy designed for the disease. Knowing the mutations or specific characteristics of my cancer was not particularly helpful, because we simply do not have enough knowledge of how to treat each such variant. Researchers are testing different associations and hypotheses, but doctors are still treating cancers on a trial and error basis, she said. She agreed to follow-up on checking into the results of my cancer being sequenced, as well as samples being stained, to determine with types of drugs might have a better chance of working on my cancer.

We also discussed whether it made any sense to have my enlarged node or group of nodes surgically removed. She said that there was very little evidence that such surgery had a beneficial effect. The one study that I showed her referred not to enlarged nodes, but to residual cancer after chemotherapy. In addition, the location of my enlarged nodes -- under my clavicle, next to the brachial plexus nerve bundle -- presented substantial risks to any surgeon who went probing around in that area. She acknowledged that she was not a surgeon, but strongly recommended that I not do that. However, she did agree that it might make sense to do another fine needle aspiration of that node, if more material was needed for DNA sequencing or staining.  She said she would look into that and get back to me.

Dr. Aragon-Ching said that, in her opinion, the best treatment available for me in my position was one of the clinical trials using immunotherapy with PD-1 or PD-L1 expression. She gave me a set of powerpoint slides on PD-1 and PD-L1 immunotherapy that she just presented at the last meeting of ASCO (American Society of Clinical Oncologists), which reported up to 50% response among patients who had mets BC, prior chemo exposure, and distant tumors. There are four different drug companies aggressively trying to prove the efficacy of that class of drugs on metastatic bladder cancer. She said that it would make no difference if I waited a couple of months, because if the immunotherapy worked, it would shrink the tumor. Plus, she said that, as a price of being in a clinical trial, a patient needs to meet the standards for the study.  

We left it with my doctor having three items to follow up on, and she would get back to me. I noted how NIH had already scheduled a follow-up CT scan for me on November 18, with the assumption that it would show the node having grown to sufficient size that I met the requirements of the clinical trials. In the meantime, if we receive further information which indicates another course is better, we'll pursue that.