I’ve decided to focus on immunotherapy to fight my cancer. Here’s what I mean by that. You see, I realized that, since being diagnosed about a year ago and starting this blog, I’ve acquired a basic overview of my cancer and the therapies available out there. What I’ve come to understand is that there is basically no traditional cure for my cancer. There are some tactics, such as the afinitor I am on now, that work for a while but then eventually stop working. In fact, at my last visit my doctor said that I had a “chronic disease”. Here’s a few definitions for you.
Chronic Disease is a long-lasting condition that can be controlled but not cured. Chronic illness affects the population worldwide. As described by the Centers for Disease Control, chronic disease is the leading cause of death and disability in the United States. Read More
Immunotherapy is the “treatment of disease by inducing, enhancing, or suppressing an immune response”. Immunotherapies designed to elicit or amplify an immune response are classified as activation immunotherapies, while immunotherapies that reduce or suppress are classified as suppression immunotherapies. Read More
Unfortunately, I am trapped in the box of conventional medicine. As I spoke with my oncologist about being more aggressive and my trip to Nebraska to see the carcinoid team there, he made a point in reminding me that I had a “chronic disease”. Translation…..”Don’t have too much hope because your disease is incurable. So….don’t think these other ideas will help you. Oh, and do what I say.” He really wanted me to remember that. Sorry doc. but no can do! As much as I respect my doctor I still need to follow my own path even if it puts me in a place he is not comfortable with. 🙂
I’ve always been an “outside of the box” kind of guy. I’ve learned through hard knocks that the box actually has value. It gets you ready to leave the box. 🙂 That was a joke. The box is good if it works but if it doesn’t then you have to do something else. Thinking outside of the box frees you to be open to other, less accepted, ideas and when you have a “chronic disease” you really need to be open to new ideas. Really, when you think about it, the box keeps growing too. Oncologists need to be flexible don’t you think. I kind of think that immunotherapy is really just part of the box and not really outside of it.
I Am Going To Focus on Immunotherapy To Fight My Cancer
Basically, I’m going outside of the box to look for an answer. Not just any answer but the answer that seems to hold the most promise for me. I have to be honest…I’m getting sick of this. Why is there no doctor interested in saving my life? Why am I the only one working on this problem? I think our medical system is horrible. I have to say, I’m starting to think some of these sayings about big pharma are true. Any way, enough complaining! 🙂
Chemotherapy – After a year I’ve seen that chemo doesn’t seem to work regardless of the combinations, dosages or length of treatment. Yes, the tumors will slow their growth or even shrink but not enough to disappear. The tumors don’t shrink so that they can be removed through surgery. Chemotherapy just doesn’t seem to be the answer. The reason, as I understand it, is that most chemotherapy works on rapidly dividing cancer cells and neuroendocrine / carcinoid cancer doesn’t usually grow like that. Often they are slow growing, medium growing and rarely grow in the way that is targeted by typical chemotherapy drugs. So, the very thing that allows me to still be walking around with stage 4 cancer is the exact same thing that keeps the chemotherapy from working. Now, don’t get me wrong, I’m on chemo right now but I’m on a drug that stops working. So, I’m assuming that this will be the same for me. Let’s hope I’m wrong. 🙂
Surgery – As I noted above, I have stage 4 carcinoid cancer. It has spread throughout my body and has completely spread throughout my liver. Because of this, and because the cancer is in my bones, it seems that surgery is really not a viable option for me as it stands today. I’m going for a bone scan soon to double check and see if the cancer is actually in my bones or not. Wish me luck because it might change a lot of things for me.
Radiation – So, radiation seems to be pointless for carcinoid tumors. I haven’t read any articles, papers or anything else that seems to suggest that radiation is an option for carcinoid tumors.
PRRT – If you are octreotide positive then you might want to consider this as an option. Octreotide positive means that your tumors take in octreotide. If you are unfamiliar with PRRT then here’s a quick description. Basically, the medical team irradiates the octreotide, the tumors drink it in and if you’re lucky the tumors shrink or even disappear. My understanding is that this only works well on small tumors. I don’t have small tumors but hey, I’m open to anything if it will work for me. The biggest obstacle with PRRT for me is that it is really not available in America. If you want PRRT then you need to go to Europe as far as I understand. Financially, that is beyond my reach as it stands now.
So, what’s next?
Immunotherapy is next as far as I can see. I see two possible moves that will lead to outcomes that may benefit me. The first is to shrink all of the tumors including the larger ones and go from there. The second option would be to shrink all of the small tumors so that I can have the larger ones surgically removed. Either way, it seems that immunotherapy holds the most promise for me. Now, I need to learn about it, find the best options for my condition and see if I can get this into my treatment plan. So, here we go again. Time to read those white papers, watch those videos and search for a hospital that might help me. Here’s a video.
Anti-CD47 – If you haven’t read my post on this new approach to treating cancer you might want to take a look. I think this approach would be classified as some sort of immunotherapy but I am not 100% sure of that yet. You can read it here – Have They Found A Cure For Cancer.
Hang in there,
Ed – To find out how to use my images on your blog for free – Click Here