Keep Fighting

That’s right. Keep fighting! I know you’ve heard it before but this common sentiment has born fruit in my life and I wanted to tell you about it and maybe encourage you.

If you’ve followed my blog then you are probably aware that I have not had the best of luck with doctors, hospitals, ambulances, nurses…..is there anyone left?  🙂 Here’s a recap of the highlights. I have been coerced by a surgeon to have useless surgery that I was too smart to follow through on. I have had a “carcinoid specialist” tell me that there was nothing that could be done for me and to prepare to die. I have been told that I was a candidate for surgery to remove my tumors only to have them tell me it was a “mix up” and that I could NOT have surgery. AND…..like most of the cancer patients I have chatted with have had my “run ins” with uncaring medical staff. Finally, I have been accused of being a drug addict when asking for a pain killer which, after reading other blogs, I have found out is a common experience. I have been through it all. At least I hope so.  🙂  So, why do I say keep on fighting.

I Have A New Plan To Fight My Cancer

My doctor at Duke, who is not a carcinoid specialist but is doing a much better job than the ones I’ve seen so far, referred me to the liver team. The nurse was amazing. She cared. She was informative. She listened to me. She did not interrupt even when I lost my point and got confused about treatment options. I cannot say enough good about her.

Then I met the doctor….actually, the surgeon. Why, oh why, did it take so long for me to meet the right people?! Providence, I guess.  I sat in his office waiting…..and waiting….and waiting. The nurse popped in and told me to hang tight because he was researching my latest possible treatment option, PRRT. My instant reaction was to leave. I said, “That’s OK. We can come back. I don’t want to trouble him”. I was thinking that I was sitting in another clown’s office who thought he could understand carcinoid cancer, PRRT and all of my issues in a single office visit but the nurse encouraged me to stay and so I did. She told me to let him do his thing and so I did. 🙂

As you know, I have an “open door policy”.  If there is an open door regarding the treatment of my cancer then I walk through it and investigate. In fact, I’ve been known to kick in a few doors too. Some of these doors lead to long hallways and eventually dead ends but maybe one will result in a cure. I don’t quit.

As it turns out, he did understand my issues in a single office visit!  He poured over the web while I was sitting there and came in the office completely versed in PRRT. Well, at least enough that I was confident in taking his advice. You see, he does other radiation treatments and so, I guess, this gave him enough of a background to help me. Now, he did not recommend anything at first but as I sat there a very clear path of treatment unfolded.

First, he laid out all of my options. This always tests my patience because the doctors are unaware that I have been researching like a wild man and know most of this stuff. I sat there quietly and listened like a good patient. My wife may have elbowed me a few times. 🙂 He went over all of the embolization options, radiation options and so on. His conclusion. Go to Texas and have the PRRT.

No, he did not want to operate or use some sort of advanced technique on me. Why? Because it was not in my best interest. Outstanding. He told me to get the PRRT and that we can always circle back and do any of these other procedures later. He then proceeded to break down my “post PRRT” options.

Keep Fighting

So, after fighting my way through a herd of clowns I have a quality Oncologist (actually a team at Duke), a Liver Specialist working hand in hand with the oncologist and have now gotten my first treatment of PRRT. Giving up would have been easier but, in the end, would have resulted in my death. I AM ALIVE BECAUSE I KEPT FIGHTING! If you feel like giving up well, don’t. You only go around once. Oh, and get this. My first predicted date has past. Yes, I have gotten a number of “predictions” saying I had 2, 5, 10 and 15 years to live. I plan on beating them all. The 2 year prediction has passed. I am now setting my sights on the 5 year date. God willing, I will beat it and I will beat the 10 year mark and the 15 year mark. How? I will keep fighting. What else have you got to do?

Keep Fighting,
Ed – To find out how to use my images on your blog for free –
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18 Comments

  1. I never cease to be amazed at your strength! I believe you probably inspire others with your tenacity. I pray your son will know this too.

  2. Right on Ed! I am working in the same fight. I just lately got brave enough to leave my HMO and especially it’s oncology department. No neuroendocrine cancer patient should stay in an HMO.

    I love your comment about predicted dates. When I was diagnosed, studies showed a 40% chance of 5 year survival when there was liver involvement. I am now at four and a half years and feeling pretty good.

    We should plan to meet in 10 or 15 years!
    Cy

  3. You go, Ed! I agree 100% with everything you said – except I would recommend going to Basel, Switzerland for PRRT because they have more experience with the procedure than anywhere in the US. Also, often less expensive – even with the travel and all.

    It’s a crime the way so many NET patients are treated and dismissed. But what a wonderful thing to find a caring doctor who took the time to address all the possible options. Please keep us posted on this physician. And YES, it is possible to find a doctor who is NOT a specialist but who truly cares enough about his or her patients to become informed.

    • Hi Lucy,

      Thanks for the encouragement. I am looking at other PRRT options but I think I will be close to finished by the time Thanks for your candid advice. You have helped me so many times.

      ~ Ed

    • Ed, I agree with Lucy (rarely, ha ha) I would recommend you go to the best Doc in the world for PRRT.that would be Prof Baum at Bad Berka in Germany. Most patients either go to him or Basel. Even if your not paying for treatment in Houston I would still go to Germany or Europe. Why? Because it’s a completely different experience. I know my wife has done both. Everything about it is different from the administration of the analog and there are more than just LU-177, down to the scans they do and the dosing and schedulingthe knowledge of Prof Baum is second to none on the planet. You will get several consultations often the latter one can last an hour. Do your homework Ed. You want the best or just a beginner. Dr Delpassand is a good man, don’t get me wrong I support what he does as I said my wife and I traveled to Houston for 2 weeks of scans and part treatment there. But, when you figure it out your better off going to Europe. Cost you say? Well Houston cost $16,000+ travel and accommodation for 2 weeks. Germany at Bad Berka treatment cost varies as each patient is treated differently but we’ve been 5 times and cost was about $10-$12,000 each time. Your accommodation and food etc is included in that. Add a couple of thousand more for spouse. We usually make a vacation of it and travel thru Europe. We usually spend around $18K and I would say is been worth every dime even without treatment ! Contact me if you like, or Lucy. Listen, and have an open mind Ed.Lucy and I have been at this a whole lot longer and I wouldn’t waste time or thought about 5 years, you should be looking at the BIG picture not settling for small goals, 5 is a given 10 likely and who knows or cares after that, were all going eventually nobody knows when. XLNT job on the Blog ! Now become the expert and get that message out to folks that are new to this, pay it forward, right Ed? Regardless of your choice PRRT as the best systematic treatment option and the sooner done the better ! I say slay the dragon while he sleeps !

      • Thanks guys. The cost is a factor for me but not a deciding factor. If you could point me toward some informative blog post or online articles it would be greatly appreciated. I am very open minded and appreciate all of your input. There’s just quite a bit of information at hand to digest and understand. In the interim, I will continue to get therapy rather than succumb to “analysis paralysis”. 😀 Thank you again. I will read anything you send my way or YouTube videos if there are any. 😀

  4. So glad you are finaly getting the treatment. My multiple liver tumours have shrunk with it after three sessions. It has knocked out my platelets but there are ways of dealing with that much better than death! My symptoms have all reduced. I pray you will get positive results. Christine

    • No! That’s awesome!!!! Are you going to TX or somewhere else? Thanks for the encouragement!!! 😀 Thanks for the prayers. I’ll take ’em. 😀

  5. How many more PRRT treatments do you have left? My tumors are stable now but this treatment is on my list for when they grow again. Keep telling us your story like it is – it’s good to get the information. Hope you stay well. Beth

    • Hi Beth,

      I will not stop …. gotta be honest if you want to help others, right? I am scheduled for 4 treatments each 6-9 weeks apart. How are you feeling. I have to say, every time you say “hello” I miss Manhattan! 😀 Miss bagels and lox. 😀 Nothing like that here in NC.

  6. Putting together a care team and keeping them all on the same page is a difficult part of the battle. Brad was down and out yesterday recovering from his liver embolization. We are at my daughter’s house to help with the boys while she is travelling for work. I spent all day researching immunotherapies and untried therapies and revisiting Cap/Tem. We strong armed our oncologist into an appointment on the 5th of November. She has been hands off since we made a trip to Ochsner in June for MIBG and then to PENN for the Liver directed therapy. She wants to be captain of the ship. I understand her desire to be in control but she’s talking to a woman who grew up in the 60s. Gees..I had 2 babies at home. I don’t have 12 years of medical education but I did graduate with honors from Harvard, through their extension school which is rare. I actually like to do research.
    This is a scary horse to ride. Even the experts are flummoxed by this disease. The learning curve is steep. I just hope we can be lucky and keep going until the technology catches up with our need. Immunotherapy is the only hope for the advanced in the long run. Right now there are still a lot of questions to be answered. Money and time and cooperation needed from a very entrenched medical system with a lot of people who’s lifestyles could be affected by radical change in the status quo. Novartis has built a factory to process blood products for CarT cell education in new Jersey. $500,000 dollars still needed at last count for Dr. June’s group at Penn to identify Neuroendocrine tumor markers specific enough to target. At that point work is possible. A lot of talented and dedicated people will still be needed to make progress a reality. Neuroendocrine tumors have fewer mutations than more aggressive tumors such as melanoma which makes them harder for the body to identify as foreign. Once appropriate and specific enough targets are Identified a delivery system must be created and tested. Then the fun begins with the misinformation mongers who might not like the status quo upheaval of a creative new way of doing business that might make radical change and potentially dismantle a multibillion dollar business for the sake of society’s huge reduction in suffering. If they can fix neuroendocrine cancer they can fix anything. On the positive side. This could solve the escalating cost of healthcare and release a huge cohort of practitioners to fill the primary care needs of the nation.
    Radical change happens very quickly if the time is right. It took maybe 10 years at most for ATM cards to rule the world. Just think what effect that revolution has had on the money supply. When I was a kid you had to be able to get to the bank by 3PM on Friday if you wanted to have dinner out on the town. Now you can decide to go to Aruba for the weekend at Midnight Friday and be back at work on Monday. Not that too many of us can afford that in this economy.

    • Wow. That was a great comment. I agree. Some of the things I am looking into are the Anti CD47 antibodies being studied at Stanford. Also, PRRT since they are putting it in me every 6-9 weeks. There is also a virus in Upsala, Sweden that eats neuroendocrine tumors. One of the interesting thing about neuroendocrine tumors is that they often are Octreotide positive which is a marker of sorts itself.

      Keep fighting!!! You are the captain and not the Oncologist. I plan on eventually seeing Dr. Liu in Colorado as it seems there are so many positive reviews of his care. You have to do what is right for you and Brad. Feel free to post any information you happen to find that you think may help others. 😀

      ~ Ed

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