Thursday, October 27, 2016

And then a trip and fall backward

I went in for my second planned infusion of Opdivo today, nervous because of the symptoms I'd been experiencing already from just one dose. The symptoms alone I could handle, that they might mean my liver was showing signs of trouble again I could not. Sure enough, I learned at the visit that my liver-related labs showed problems again, significant enough to be denied any more of the treatment and to be put on a high dose steroid regimen... again. Last time I had a steroid regimen and my immune system was essentially shut down, the tumor grew quite a lot. I fear that this may happen again. But what scares me the most is that I will never be able to have this type of immunotherapy again. 

It's as if after my diagnosis I was falling, and by chance landed on some golden magic carpet and thought I was going to stay there, safely, only to have it pulled out from under me and now I'm falling again. Immunotherapy was actually working. Something that's incredibly rare in the world of mucosal melanoma. I had a good shot. But it would have killed me before the cancer could. Now, I have to rely on the hope that my immune system will retain some kind ofmemory  for the notes of a song it's only just learned. And that the steroids help to repair my liver but don't work so well that they erase the memories, too. 

I meet with a radiation oncologist on Monday to see if I'm eligible for radiation, which has shown promise with mucosal melanoma when in combination with immunotherapy (so I'm not sure where that puts me). I will go back to MD Anderson for their opinion as well. And now we will look for research trials. The T cell study that was my "back up" involves immunotherapy, unfortunately. I am also told that I will be ineligible for trials for new lower toxicity immunotherapies because of my adverse liver reaction. 

I will keep you posted as I learn more.

UPDATE: Dr Patel (MD Anderson) called me today and said she has a different plan that involves not taking steroids yet but keeping a close watch and letting me have more Opdivo and hope things don't get too high. She also said I'm not excluded from trying other immune therapies. She's pretty much taking over, and has some other ideas for a things I can do. I needed to hear this! She's willing to work with this to maximize my time getting this helpful treatment 😆. 

Friday, October 14, 2016

... And one step back


Yesterday was my greatly anticipated appointment with my oncologist to find out 1) the results of my most recent scan and 2) the plan of action for my steroid taper and resumption of treatment. 
Unfortunately, he did not walk through the door and immediately say "good news on the scans" as I know him to do in any case that involves great news. I know this because I've experienced it at least once first hand and also a number of times as an unwilling bystander, thanks to the paper thin walls at the clinic (they really should do something about that). Instead, he asked about some of my side effects and symptoms first and then started in- "two things on the scans...". Let me pause to emphasize here that when you are waiting for a result like this, every word and syllable left waiting for the actual result to fall on your ears can feel like a century. I'm recreating just a fraction of what it feels like here. Then, the meaning behind those introductory words are processed with rapid speed and the words are matched to all the possible outcomes they might be introducing. This is possible because each moment is truly a slower version of time. "Two things" were not the first two words I was hoping to hear, but not the worst way for that conversation to begin. He continued, explaining that the first thing is that there is NO VISIBLE SPREAD! This is excellent news that I unfortunately, at the time, allowed to be overshadowed by the next thing he said. However, time to digest has granted me the advantage of seeing the importance of this "first thing." To make it clear to you now, my immune system, despite being essentially shut down for the greater part of two months, was active enough to prevent the cancer from setting up shop in any new locations. Major relief. Major news. This is very, very good. And now on to the "second thing." The remaining tumor (only one) that had seen such dramatic shrinking while on the combination treatment has grown again during the steroid taper. It's not as large as it was before treatment started, but if it started as a lemon, and shrunk to a walnut, it's now somewhere around a small lime. This is not entirely surprising considering the way the immune therapies work and the purpose of the steroid taper, but we were hopeful that things would at least remain stable during the taper. They did not. This is not terrible news but not great news. 

Now - on to the plan, which hinges entirely on the liver. This part gets data and detail heavy so you can skip to the end at any time if you want the quick summary. The immune attack on my liver, the sole reason for the steroid taper, was significant. He speculated that one more dose of the combination could have been life-threatening. The immune system is a powerful thing that once set against a target can inflict serious damage. Given the amount of steroid required to bring my liver labs down to normal and the high values of my liver labs, getting the fourth and final dose of the combination is not a reasonable option for me and could create another attack that, if not deadly itself, would require more steroids and more time off of treatment.  Not good. The alternative is to go ahead to the single agent. This single drug, Opdivo (nivolumab), has pretty a good success rate all on its own, particularly for widespread melanoma (but not necessarily large tumors). For large tumors, the best results seen are with the combination - like the results I saw before the steroids. This has lead researchers/oncologists to speculate that the combination is best for attacking established cancer and nivolumab alone is good for preventing spread (based on the differing cellular processes). What this means for me is that IF my liver holds on, and I will be very closely monitored this time, that this may lead to long-term stable cancer, which is a fair goal. However, to target the larger, inoperable tumor we may reach outside the box. There have been some recent studies that show the addition of radiation to a tumor, while getting immune therapies, can help the process. When you are priming the immune system to attack anything fishy and you shoot radiation at something to damage it, it makes it REALLY fishy. So, even if mucosal melanoma doesn't respond great to radiation alone, the combination of radiation AND immune therapies has been shown to have a "durable response." This was my oncologist's term. I have chosen to replace it with HOPE. Because HOPE is not lost here. Hope is still very much alive. As am I. 

I got my first dose of the single agent yesterday. I am completely off of steroids now (and getting my non-puffy face back). We wasted no time to get back on treatment, which I am very grateful for. It feels good to be back in treatment mode again! Right now the best case scenario is that my liver holds on, doesn't have any trouble and that the single drug, opdivo, works great. If I do radiation, hopefully that just helps the process even more and we see this thing go away. Forever. 

Summary - 
1.) The cancer did NOT spread during the steroid taper
2.) The tumor grew during the steroid taper         
3.) My liver can't handle more combination treatment so I have started single drug treatment
4.) I might be starting radiation soon
5.) This mixed news is, on the whole, good news 

Take home? The fight is not over... but... the fight is not over!!