Image source: https://ayurvedaintro.files.wordpress.com/2014/06/deefanddumb001.jpg
Today I met with Dr. Aragon-Ching, my clinical oncologist at GW. She is the medical professional who has overseen all of my chemotherapy, and I respect and trust her percentages. Last week, I had sent her the next email:
I assume that Dr. Apolo has recommended you of the outcomes of my PET-MRI scan that I had on 9/2/14, which showed an enhance in size within the supraclavicular lymph node (1.5 cm x 1.35 cm), with active uptake of the F18 flouride glucose, as well as enlargement of adjoining nodes. I'd want to fulfill with you to talk about my remedy percentages. My questions include the next:
1. Last November, when we suspended my dose dense MVAC after 3 rounds, we discussed the alternative of going back to it if the scans showed further growth. In pale of the 9/2/14 scan outcomes, does it make exceedingly feel to give thought any further chemotherapy, and if so, what type?
2. Is it price taking into account adding a taxene into a cisplatin-essentially structured remedy? If so, is that potential outside of a clinical trial?
3. What clinical trials, if any, would you place forward that I think about?
four. What would you do if you were me?
She organized for an appointment today, and spoke with Dr. Apolo about my scans. I also did a considerable quantity of analysis on pubmed.org to review the principle latest literature on remedy of metastatic bladder melanoma, and browse multiple dozen articles. A significantly life like article became Chemotherapeutic and targeted biologic agents for metastatic bladder melanoma: A entire review, published in January 2014 within the International Journal of Urology. It summarized the principle up to date prime practices, latest analysis, and plenty of current clinical trials. Also of note became Optimal remedy for metastatic bladder melanoma, simply published (September 2014) in Current Oncology Reports.
I also researched articles pertaining to to 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 could also be a survival skills for the removal of diseased nodes. Another article, Lymph node metastases in patients with urothelial carcinoma variants: affect of the actual variant on nodal documents,from the June 2014 adaptation of Urologic Oncology, confirmed that micropapillary bladder melanoma (the kind I have) is the principle fashioned to have node positivity.
Thus prepared, I met with Dr. Aragon-Ching for more than an hour. She is likely one of the imperative prime sorts of clinicians — when you meet with her, all of her attention is concentrated upon you, the patient. She severely isn't speeding to an less complicated appointment, or terse and abrupt in her communications. Instead, she willingly explored all of my questions, as well as the counsel from the articles that I introduced.
She began by stating that, while she had spoken and traded emails with Dr. Apolo, she had not yet acquired a copy of my most latest scan. She cautioned me that the PET-MRI imaging is a clean technology, and the undeniable reality that it measured my node to be bigger than my prior CT scans didn't necessarily mean that it had all of sudden surged 30% in size in 6 weeks. Instead, she said it became potential that the clearer decision of the brand new scan became simply a far more competent picture of what had been going on in that node for lots of years. (She also acknowledged that it became potential that, exceedingly my node had taken off in growth, even though she said that would be strange for a distant bladder melanoma metastases.)
She also said that, when regarded within the huge picture of metastatic bladder melanoma that she sees each one day, the outcomes of this scan were no huge deal. Her goal became not to brush off my considerations, but in its place to lay into context what became going on to me in contrast to various Stage four bladder melanoma patients. They could have assorted tumors of 3 cm or bigger of their liver, or lungs, or various organs, and yet they're still being actively treated. I appreciated her message and reminder that it may perchance be tons worse.
Building on that, she said that she became purchasing groceries into the fate of the likely course of my disease, and that became strongly influencing her views on what I may still do now. Dr. Aragon-Ching felt that my mets bladder melanoma still became chemo-sensitive — she believed that the reason why my mets BC became quiescent for the beyond yr became due to ddMVAC remedy that I had last fall — and that my body may deal with no less than one more set of platinum-essentially structured chemotherapy therapies. That being the case, the question she became asking herself became, when became the prime time to give me that course of chemotherapy. She said that various patients who had tumors of their organs could have their lives elevated by having more chemo to slow the expansion of those tumors. She said that it became a great deal likely that, at some point within the fate, I also would have those vary of distant tumors. She would pretty preserve the alternative of more chemotherapy in reserve for when I exceedingly need it. As far as what vary of chemotherapy she would think about, she said that we would cross that bridge when we came to it. She said that there were lots of percentages attainable, consisting of carboplatin (in its place of cisplatin), adding a taxene, and perchance various medication which can target the actual variants within my melanoma.
That segued to the question of what actionable counsel may perchance be obtained from the actual vary of mets MC floating circular in my body. Dr. Aragon-Ching said that we were still years faraway from custom designed-made medicine, where each one melanoma may perchance be run with the aid of a DNA scan and a determined on remedy designed for the disease. Knowing the mutations or unique qualities of my melanoma became not significantly handy, end result of the reality we simply do not want sufficient details of the means to regard each one such variant. Researchers are sorting out completely various establishments and hypotheses, but doctors are still treating cancers on an ordeal and mistake basis, she said. She agreed to follow-up on checking into the outcomes of my melanoma being sequenced, as well as samples being stained, to favor with sorts of medication may well have a far more competent opportunity of working on my melanoma.
We also discussed even if it made any exceedingly feel to have my enlarged node or group of nodes surgically removed. She said that there became very little proof that such surgery had a life like affect. The one be taught that I showed her referred not to enlarged nodes, but to residual melanoma after chemotherapy. In addition, the placement of my enlarged nodes — lower than my clavicle, next to the brachial plexus nerve bundle — introduced substantial risks to any surgeon who went probing circular in that vicinity. She acknowledged that she became not a surgeon, but strongly recommended that I not do that. However, she did agree that it may well make exceedingly feel to do one various fine needle aspiration of that node, if more cloth became needed for DNA sequencing or staining. She said she would visual attraction into that and get back to me.
Dr. Aragon-Ching said that, in her opinion, the prime remedy attainable for me in my location became one of the imperative clinical trials the use of 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 simply introduced on the last meeting of ASCO (American Society of Clinical Oncologists), which reported up to 50% response between patients who had mets BC, prior chemo exposure, and distant tumors. There are four completely various drug businesses aggressively trying to prove the efficacy of that class of medication on metastatic bladder melanoma. She said that it could make no difference if I waited many completely various months, end result of the reality if the immunotherapy worked, it could shrink the tumor. Plus, she said that, as a value of being in a clinical trial, a patient desires to fulfill the standards for the be taught.
We left it with my medical professional having three presents to follow up on, and she or he would get back to me. I well-knownshows how NIH had already scheduled a follow-up CT scan for me on November 18, with the belief that it could show the node having grown to sufficient size that I met the requirements of the clinical trials. In the meantime, if we receive further counsel which indicates one various course is more competent, we're going to pursue that.