I Am Going To Focus on Immunotherapy To Fight My Cancer

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

and…

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

Chronic Disease

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

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4 Comments

  1. Ed,
    Good news. I just got back from Iowa City, University of Iowa Cancer Center with Dr O’Dorisio. The Cancer Center will be the first in the country to be approved for PRRT Therapy. He used to send his patients to Switzerland for this treatment before. I have been “chosen” to be in this study, but will not be using this until later. I just received my first Octreotide treatment at Siteman Cancer Center in St Louis. I haven’t opted for any surgery yet. I am newly diagnosed with stage 3 neuroendocrine with primary tumor in ileum, some metastasis in liver and breast. I have been following a mostly vegan diet since I was first diagnosed after a routine breast exam. I would definitely start the ball rolling and contact Dr O’Dorisio. Dr Howe, one of the best neuroendocrine surgeons around, is also part of the team. Let me know if you need more contact information. I will be happy to be of any assistance.
    I’ve been crying in my beer (can’t drink the stuff anymore because of the high amine content ) ever since I was first diagnosed 3 months ago. We can never give up hope! We will fight this monster as gladiators do!

    Warm Regards,
    Emma

    • Emma! Such good news. Yes, fight, fight, fight! Thanks for the info on the PRRT. I was under the impression that PRRT didn’t work on large tumors. My tumors are gigantic and diffuse (my liver looks like confetti) . Any how, you deserve time to cry in your beer if you need to. In fact, if you need to cry on my shoulder just say the word. May I ask what state you live in? We are in NC near Raleigh. BTW, how’d ya find me? 🙂

  2. Ed,
    I am in St Louis, Missouri. Not sure exactly where I found you, but you must have has some kind of link to Carcinoid Cancer Organization website. I’m aorry to hear this disease has progressed so much. I’m not sure who has been treating you, but am convinced that makes all the difference. One has to be so proactive with this sh… I can’t believe I’m on this journey, but its good to find others like you who are traversing a similar path. (Talk about a “road less traveled”)
    I finally started the Octreotide treatment last Friday and am having some side-effects. I’ve searched high and low with 3 differing opinions looking for the “cure” , but have come full circle again and surgery looks like its inevitable. Now, I need to make the most important decision as to who I am going to trust to work on me.
    I still think you need to contact the folks in Iowa to see if you qualify.
    No dilly dallying….fight, fight, fight. I may need your shoulder to cry on sooner than later.
    Warm Regards,
    Emma

    • Missouri huh? Funny, I was born on Whiteman Air Force Base ! 🙂 As to who has been treating me….long story but currently I am being treated at standard university hospital but I have seen specialist and even been in contact with Dr. O.

      Yeah, the cure…..they call it a chronic disease. Don’t believe them. It’s only chronic until it isn’t if you know what I mean. Keep looking. As far as surgery goes, if I could rip it all out right now then I absolutely would! (But that’s me)

      I absolutely will contact the guys in Iowa. In fact, my records are ready to go. Yup, fight, fight, fight…..and crying is normal but, I can tell you know that. Did you read the info on the Metabolic treatments? It looks interesting but they mention a “neuroendocrine carcinoma”. I didn’t know those existed. I’m looking into this a bit more. Something will kill this stuff, I’m convinced.

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