I am the leader of my life, as far as making decisions about it anyway. So I’m going to start this by repeating that I’m not writing this to ask opinions on what I should or shouldn’t do. I write these things out as therapy or trying to sort through and get things straight in my own mind. I share all of this just as I have from the start of my journey in 2001. It’s cool when I hear that anything I write helps others in any way with their own journey and decisions. But that’s as far as it goes. I talk through these things with family and close friends sometimes, and thankfully none of them are trying to pressure me either way.
So this post is about the DNA test results I got from the oncologist on Wednesday. He did say I have a particularly good gene (ROS1) that is very positive for yet another type of targeted drug treatment. He gave me a lot of material to look at, all pretty confusing but totally scary.
Again, it’s important to note that he’s not talking about a cure in any way. This would just hopefully give me more time (in the 1-3 year range). He said the cancer figures out how to get around the therapy in time, but the hope is for even more effective new drugs at that point.
He knows I would never agree to traditional chemotherapy, so he was careful to say it’s really not that. But just from the material he gave me, I don’t care what it’s called when it basically has some very nasty side effects. So whatever he wants to name it, if it possibly lengthens my life, but effects the quality to such an extent I can’t really enjoy my life and I’d rather be dead, forget it.
Of course he cautioned me they have to include every single side effect suffered from even one person in the trials, but that I shouldn’t expect that I’d get all or any of them. OK, I understand that, but I’m certainly going to weigh and consider the risks no matter what. So from what I read in the reams of paper in the Patient Drug Information he gave me, along with info from the official Pfizer website about Crizotinib (brand name Xalkori), here are just the highlights of what I’ve been weighing in the order most important to me:
Eyes: Very bad eyesight problems like loss of eyesight have happened with this drug. Most of the time, these happen during the first week. (From Patient Drug Information, pg. 3)
Xalkori: The most common side effects include vision problems – can be severe and may cause partial or complete loss of vision in one or both eyes. Visual disturbance 60-71%. Onset less than 2 weeks. (From Drug Info, Adverse Reactions, pg. 4) – Ocular toxicities: visual impairment, etc. commonly occur. (pg. 6)
My comments: 60-71% are not odds I would take! I already have blurry vision and floaters that are quite bad enough. And even a reasonable chance of going blind or having even worse vision than I do now is a definite stop sign!
The other most common side effect is nausea. OK, even though I hate that feeling, I can’t say that would be a deal breaker. However, then I looked up the side effects for Compazine (the anti-nausea med I’d always have to take at the same time). Blurred vision is one of the most common there. So a double whammy for my eyes!
Immune System: Apparently this drug suppresses it in some way because there’s much more of a risk of getting infections. There are lots of procedures they outline to deal with this, including staying away from crowds and sick people. Just the way they describe how caregivers have to wear gloves to give it to you to protect themselves and how to dispose of anything that touches it is pretty freaking scary. Basically, I’d have to become a germophobe, be OCD about washing my hands and walk around with a thermometer and call the doctor anytime my temp gets over 100.4°. If that’s at night and the office is closed, go to the emergency room because the danger of infection is that high. Wow, that sounds like a really fun way to live!
Liver: Very bad or sometimes deadly liver problems. I’d have to get blood drawn every week to check for effects on liver, kidney and other organs. Besides that, I have to go in regularly for other consults and for them to “eyeball” me to see how I’m doing. Yeah, I hate needles – and obviously forget about any kind of travel since my time would be dictated by doctor visits and tests.
Excerpts from the official Pfizer page: Xalkori may cause life-threatening liver injury that may lead to death. May cause life-threatening lung problems that may lead to death. Symptoms may be similar to those symptoms from lung cancer. May cause very slow, very fast, or abnormal heartbeats. Great, the lung cancer symptoms I have from actually having lung cancer could be multiplied by the drug I’m taking to treat it!
Lung: Pulmonary toxicity: Severe, life-threatening and potential fatal lung disease associated with Crizotinib. Onset generally within 3 months of treatment initiation. So you can’t even tell right away if it’s going to make matters worse!
Let’s not forget the additional drugs that have to be taken to manage the side effects of the main drug: one or more things for nausea always and possibly antibiotics to ward off infections. As for cost, he swears he can get it provided from the drug company or through grants. He said it costs over $10,000/month, but info online puts it at more like $17,000! How long will big pharma forego their profits, and what about all the other drugs I need to take along with it?
Who can be expected to rationally make these kind of decisions?!
My Conclusions: I swear, I had reached more peace of mind with the thought of dying once I got used to that concept instead of making this kind of decision! But here’s what I’ve come to so far anyway. I’m not saying my way is what’s right for anybody else and I’d never impose my own beliefs on anyone else about their life and treatment. I hope I’m afforded the same respect even from those who don’t agree with me.
Even though the oncologist says this is NOT just new chemo, it sure still sounds like the same thing to me. Risks are similar and since this is new, they just don’t really know (or wouldn’t say if they did). I do believe that the new and promising drug of today will be the one lawyers are suing about in a few years. It just feels like I’ll be a guinea pig for big pharma and totally at their mercy when it comes to pricing. I also thought it was interesting that the oncologist was so insistent that it’s really not the same as chemo since I had made my opinion known about that. But the nurse who spent an hour or so telling me all about the drug – what is her title? “Oral Oncology Nurse.” Seriously, who are we trying to kid here?
Seems my life would then just consist of worrying about my quality of life getting worse instead of just living a normal life until I just can’t anymore and naturally die of cancer. Which I will eventually do anyway no matter what. In the meantime, I would feel like crap and my time and energy is consumed with pills, more pills for the side effects from the pills, doctor visits, tests and monitoring to see if the drug I’m taking to save my life is killing me. Is prolonging that kind of life worth it? I’ve always said no. I watched my mother live that way and I swore I would never follow that example. I do not intend to spend the rest of my life chasing cures from here and there and waiting in depressing doctors’ offices, hospitals and being poked and prodded with needles and radioactive tests.
I keep hearing from friends saying either this is my decision alone or from others with what they insist I should do. Some say I shouldn’t feel obligated to keep writing and sharing so much personal stuff about this journey. I do read and consider everything from those who are concerned for me, but don’t feel compelled nor do I have time to respond to them all. Above all, I certainly do know to trust myself and my own instincts over all others. That still doesn’t mean this decision is easy or that I don’t recognize the seriousness of the consequences.
“Your vision will become clear only when you can look into your own heart. Who looks outside, dreams. Who looks inside, awakens.” ~ Carl Jung
So I certainly have looked inside my own heart. I’ve prayed and tried to listen for higher wisdom from above. When I pulled one of my angel guidance cards after coming to my conclusions, here’s what I got and it made total sense to me:
Freedom: The angels guide you to freely express your true thoughts and feelings with love.
“You may feel trapped right now by life conditions. The angels ask you to realize that you are the only jail keeper that ever surfaces in your own life. Whenever you realize that you have the power to be free, freedom follows. Everything that you do in your life is by choice, and you are free to choose again. Even prisoners are free to choose their thoughts so that they feel peace and happiness under any conditions.
The next time you begin a sentence with the words, “I have to ______, ” please stop. Ask God and the angels to show you some alternatives. They will either help you complete the task from a loving mind-set so that you don’t feel trapped, or they will guide you to do something else that you will love.”
So I was reminded I am free to choose again anytime I want to. And right now, I choose not to take that drug. All in all, I still feel pretty good right now, other than being pooped in the afternoon and my energy level in general is lower. But I can still function, drive around and take care of myself.
I don’t plan to leave Oregon due to my rights here and the legal ability to treat myself with cannabis products. So my plan is to continue with the Rick Simpson type oil (RSO) and other CBD/THC products, both topical and sublingual. But there are other places to go in this beautiful state, where hopefully I can escape the smoke from the wildfires for a while.
If things get much worse, I may consider the last ditch Hail Mary efforts, but nothing about that feels right to me now. And I’m thankful I have the freedom to make that choice and to change my mind whenever I want to.
And now that I’ve pretty much fulfilled the Oregon residency and the Right to Die With Dignity requirements, as well as necessary other details, I am free to get out and travel some. That is still what makes me the happiest and I don’t intend to give that up totally before my time. For that I am truly grateful.
Info I found interesting:
The True History of Chemotherapy & the Pharmaceutical Monopoly
“There are two ways to be fooled. One is to believe what isn’t true; the other is to refuse to believe what is true.” Soren Kierkegaard