I've been meaning to write about this topic for a while. My experience with them over the past year has given me a perspective that I've really wanted to share. I was reminded this morning by some pain around one of my ribs on the left side of my chest, likely a tumor pushing on something as I'd mentioned yesterday.
When I was at my worst last year, I had to deal with pain. Right before my pleurodesis, as I was in pre-op, I felt a sharp pain in both sides of my chest. It wasn't fully correlated with my tumors; while I had a lot of them in me, mainly on the left side of my chest, I think some of it was the stress of the moment. I called for the nurse, and she gave me an IV push of dilaudid. Almost immediately, I felt a warm feeling starting from the center of my chest pushing outward and pushing all the pain out of my body. I also felt sedated and calm. It creeped me out a bit -- did I just get high?
I have to say, though, that dilaudid was very helpful in getting through those days. First, the ones in the hospital for pleurodesis, and then right before I started chemo again, thanks to pain from a spine tumor that oxycodone barely made a dent in. Yes, I've gotten quite familiar with the opioid family of medicines. With most chemo regimens, aspirin and ibuprofen aren't allowed because of their blood-thinning effects. So if Tylenol doesn't work, the only choice left is to go with a narcotic.
I'm glad my pain went away quickly after I started chemo, minimizing my need for painkillers. Once I experienced the effects of the dilaudid push, I felt that I saw in a way that I hadn't seen before the tempting nature and addictive potential of these drugs. Looking back on that experience, where I was able to get a very strong painkiller (here's an interesting chart showing the relative strengths of different opioid medicines -- dilaudid is four times as strong as heroin, which is actually a legally available prescription drug in some countries) on demand, I remembered how downright miserable I felt. My tumors were causing me pain, fatigue, lack of appetite, coughing, and on-and-off fevers, and I was only getting sicker. The narcotic high was about the only thing that could wipe that all away, at least temporarily. So even with all the negative connotations around the term "getting high," it is in fact medically necessary to do so sometimes. I was fortunate to recover from that condition so that it was no longer necessary, but for many other cancer patients with advanced disease, it is a way to ease their last moments of life.
For all the good that these medicines have done, though, they also are major contributors to the societal problem of drug addiction. Sometimes it is a result of having to take opioid medicines for a long time due to severe chronic pain. But in other cases, otherwise healthy individuals are using them for the "feel good" effects. I wanted these medicines when I was feeling utterly miserable. The question in my mind is, what is the source of sadness, unhappiness, emptiness, or frustration in the lives of otherwise healthy people that makes them feel like they need to turn to drugs that are this powerful for an escape? Based on this, I feel that the mental health aspects associated with this, or any other illness for that matter, should never be neglected.
Sunday, May 8, 2016
Saturday, May 7, 2016
No pain, no gain?
Sure feels like it. The regorafenib didn't work. I got the news on Wednesday. The pleural tumors grew; the largest is now 2.6cm. Three enlarged lymph nodes near the heart, and some tiny lung spots too. And I'd had my life (mostly) back. I was going to work full-time again and getting stuff done. Thankfully I got one project I was working on to a stage where I could submit a paper. Fingers crossed...
So now, I've had two treatments which are low on side effects compared to my others (regorafenib and Keytruda), and neither worked. The "classic" chemo treatments that did work were, on the other hand, harsh. Does that mean that a treatment has to be tough in order to work? I sure hope not! But I wouldn't mind that holding true now. I'm considering a few options, that I expect to be harder on me than regorafenib:
1. TK-216 clinical trial: this is one of the first drugs specifically targeted to Ewing's sarcoma. It's supposed to act on a protein produced by the EWS/FLI-1 gene fusion present in most cases of Ewing's. The downside is that it's a Phase I trial. In Phase I trials, the goal is to establish the right dose to give to human patients. So patients start at a low dose, likely to be subtherapeutic. Subsequent patients (they are organized into cohorts) get higher doses; this escalation continues until unacceptable side effects (formally referred to as dose-limiting toxicities) result. Some Phase I trials allow for dose escalation within cohorts, and some don't. I meet with the closest participating institution (UCLA) on Monday to find out all the details.
2. Vigil clinical trial: this is a Phase II trial of a vaccine made from a patient's individual tumor. The idea is to train the immune system to recognize tumors as foreign entities and kill them. Phase II means the dose has been established; the goal now is to study efficacy. In this trial, there's also a comparison arm with a chemotherapy regimen (gemcitabine/docetaxel) used to treat a number of sarcomas. Assignment to arms is at random, so there's only a 50% chance of getting the vaccine. The other issue is that surgery is required to obtain the tumor sample used for vaccine production (unless I get "lucky" and have at least 500 mL of pleural effusion handy), and surgery has had a history of causing any tumors in the vicinity of the operation to blow up and grow even more quickly (the one exception was my amputation, where the cut was made in a disease-free area and all of the tumors were removed). On top of that, I'm not sure how much local control of remaining tumors if any I'll be allowed to pursue while I'm recovering from surgery/the vaccine is being produced. The closest participating location for this trial is a sarcoma clinic in Santa Monica, which I'll also be visiting to get more details.
3. More chemo: there are a couple of drug combinations I can still try, which I can get these close to home. One in particular has shown promise in early published data; I'll be more specific if that's the route I end up pursuing.
On top of deciding between these options for systemic treatment, I'll also be looking at using radiation to kill the tumors I currently have. I think I can feel one of my pleural tumors starting to push on something, which has resulted in a feeling of heaviness/tightness on the left side of my chest near where I had my thorascopic surgeries last year. I can still breathe fine for the moment, but that won't last forever if I don't do something. Hopefully I'll have a decision in a few days.
So now, I've had two treatments which are low on side effects compared to my others (regorafenib and Keytruda), and neither worked. The "classic" chemo treatments that did work were, on the other hand, harsh. Does that mean that a treatment has to be tough in order to work? I sure hope not! But I wouldn't mind that holding true now. I'm considering a few options, that I expect to be harder on me than regorafenib:
1. TK-216 clinical trial: this is one of the first drugs specifically targeted to Ewing's sarcoma. It's supposed to act on a protein produced by the EWS/FLI-1 gene fusion present in most cases of Ewing's. The downside is that it's a Phase I trial. In Phase I trials, the goal is to establish the right dose to give to human patients. So patients start at a low dose, likely to be subtherapeutic. Subsequent patients (they are organized into cohorts) get higher doses; this escalation continues until unacceptable side effects (formally referred to as dose-limiting toxicities) result. Some Phase I trials allow for dose escalation within cohorts, and some don't. I meet with the closest participating institution (UCLA) on Monday to find out all the details.
2. Vigil clinical trial: this is a Phase II trial of a vaccine made from a patient's individual tumor. The idea is to train the immune system to recognize tumors as foreign entities and kill them. Phase II means the dose has been established; the goal now is to study efficacy. In this trial, there's also a comparison arm with a chemotherapy regimen (gemcitabine/docetaxel) used to treat a number of sarcomas. Assignment to arms is at random, so there's only a 50% chance of getting the vaccine. The other issue is that surgery is required to obtain the tumor sample used for vaccine production (unless I get "lucky" and have at least 500 mL of pleural effusion handy), and surgery has had a history of causing any tumors in the vicinity of the operation to blow up and grow even more quickly (the one exception was my amputation, where the cut was made in a disease-free area and all of the tumors were removed). On top of that, I'm not sure how much local control of remaining tumors if any I'll be allowed to pursue while I'm recovering from surgery/the vaccine is being produced. The closest participating location for this trial is a sarcoma clinic in Santa Monica, which I'll also be visiting to get more details.
3. More chemo: there are a couple of drug combinations I can still try, which I can get these close to home. One in particular has shown promise in early published data; I'll be more specific if that's the route I end up pursuing.
On top of deciding between these options for systemic treatment, I'll also be looking at using radiation to kill the tumors I currently have. I think I can feel one of my pleural tumors starting to push on something, which has resulted in a feeling of heaviness/tightness on the left side of my chest near where I had my thorascopic surgeries last year. I can still breathe fine for the moment, but that won't last forever if I don't do something. Hopefully I'll have a decision in a few days.
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