The results of Thursday's CT scans of my neck, chest, abdomen, and pelvis were posted last night in MyChart. All were unremarkable, which I find to be remarkable. No evidence of disease anywhere. Yay!
Reality check: My doctors and I still assume I've got microscopic metastatic cancer lodged in my body. The rule of thumb is that a mets patient needs to have no detectable cancer for five years before we can start using that ambiguous and nontechnical word - "cured." I'm nine months into my latest experience with No Evidence of Disease (NED). Since I was diagnosed, I've had four periods of being NED: May 2012-August 2013; January-August 2014; June 2015-February 2018; and the one I'm currently experiencing, which started in June 2019. The longest NED period I've had was two years and eight months.
Each mets diagnosis is a bitch slap from death. I remember each of them. The first time - May 15, 2012 - was the hardest. Then time passes and hope slowly rebuilds, then gets crushed. Each cycle makes it more difficult to let hope rebuild. At this point, I don't expect to be cured. I'm just stretching out time, going from therapy to therapy, and trying to find joy in each day.
Hi Ken. I have been following your blog ever since my mom has been put on Opdivo. Basically she started nivolumab kn December after she had a recurrence of her SCC. After 4 doses there was a decrease in her tumour but another tumour was identified. Following another 4 doses, he original tumour showed significant decrease in size and a marginal decrease in the second tumour, however there are now two new tiny tumours in the same region. What do you make of this from your experience? Is the treatment working or just slowing down the cancer spread?
ReplyDeleteThanks for your note. It sounds like the tumor growth has slowed, and the overall tumor bulk has decreased. Checkpoint inhibitors like Opdivo have an overall response rate of about 45-50%, with about 25-30% of those patients having stable disease; 20% having measurable decrease in overall tumor size; and about 5% having a complete response (like me!). Slowing or stopping tumor growth and having stable disease is better than the alternative of rapid tumor growth. Stable disease can last for months or years, and it can change the way you and your mom think about the SCC -- it's a chronic disease that can be managed, not an acute disease. It also gives you and her time to explore some of the newest combination therapies, such as Padcev (pembrolizumab and enfortumab vedotin-ejfv) Early trials have shown an overall response rate approaching 90%. Wow! God bless you and your mom!
ReplyDeleteHey Ken. Thanks for you response. So spoke to the doctor today and he thinks the new nodules are nothing to be worried about and that we should continue with the nivolumab doses. he thinks there is huge regression in the original tumour which means there is progress. at what point do you think one should start thinking about alternate therapies? Something like Padcev should be tried now or at a later stage? Really appreciate your help here.
ReplyDeleteAdditionally i see Padcev (pembrolizumab and enfortumab vedotin-ejfv) is for Advanced Bladder Cancer however my mother is undergoing treatment for Head & Neck SCC.
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