It has been quite a while since I’ve updated on my “182.5” mantra. But, that does not mean that I haven’t been living it.
I am now on day 246. Yep, I smashed the 182.5 days and I’m well into my second set. I didn’t get down to 182.5 pounds, but I did meet some other big aims. 18.25% body fat according to the USAF online measurement calculator. Also met my 83KG bench press and 182.5 seconds plank.
I’ve been continuing to work on my visualization as well, and pulled off a big one with a place in the 2016 London Marathon. And, I’ll be running for the NET Patient Foundation.
My funding raising page is
On the “Virgin Money” website you can submit “your story” of why you are running. Below is a copy of the 14,400 character essay I wrote for this website. I’m quite proud of it actually, and hope you enjoy reading my marathon story up to now.
The 14,400 character version of “My Story”
Thank you for stopping by my donation page. I’m running the London Marathon 2016 in support of the NET Patient Foundation to raise funds and awareness for the disease I’ve been dealing with since diagnosis in 2007.
Neuroendocrine Tumours (NETs) are abnormal growths that arise from cells of the endocrinal (hormonal) and nervous systems. NETs can be cancerous (malignant) or non-cancerous (benign). Neuroendocrine tumours can occur throughout the body, but primary sites include the gastrointestinal tract, pancreas, rectum, lungs, and appendix.
The NET Patient Foundation was founded in 2006 to provide support, education and information to anyone affected by neuroendocrine cancers. They are advocates for the patients so they may achieve the best possible outcomes. They raise awareness of NET cancers throughout the UK. Lastly, they raise funds for clinical and translational research projects.
My story is very similar to many patients of Neuroendocrine Tumour cancer (NET cancer). It started with being ill with “carcinoid syndrome” for a few years with night sweats, diarrhoea, tiredness, unexplained rashes, and just overall feeling run down. I had convinced myself it was all down to a very unhealthy lifestyle and diet.
By the time I raised my hand with a problem, the diagnosis was confirmed after cancer metastases to the liver. (If you can get it before the cancer spreads, you can remove the primary tumour and you are “cured”. If not, it becomes a case of managing the disease, with a survival rate around 50% at 5 years back then. This is why it is so vital to raise awareness. The NET cancer motto is “you can’t detect it if you don’t suspect it”. My cancer was diagnosed quite quickly, but the symptoms can other diseases like IBS, Chrons, coeliac, and even other cancers which leads to misdiagnosis in 61% of patients).
The plan was for a major liver resection (70%) and monthly shots of Octreotide (a hormone that controls the carcinoid syndrome). The surgery in January 2008 was hard, but it worked! The reduced tumour load and Octreotide held me well for about three years.
In 2011 we discovered the tumours were on a growth spurt. But this time, they were “inoperable”. What? They didn’t know my surgeon. My surgeon (Mr. David Lloyd at the Royal Infirmary Leicester) is superman to me! He had even developed a “microwave on a stick”, and had zapped some tumours while repairing a hernia in 2009.
I’d been dealing with the disease for three years, but was still relatively ignorant on what I was dealing with. Unfortunately, superman confirmed the diagnosis that it was “inoperable, and had likely spread outside the liver”. Things were starting to get a bit scary. More than 70%? How much do you need?
I was referred on my private insurance to Professor Martyn Caplin and the NET specialist team at the Royal Free in Hempstead – London. My oncologist’s (Dr. Karen McAdam) hands were tied with treatment options because NET cancer is not a good candidate for normal chemotherapy. NET cancer tumours are slow growing, which is kind of good news. However, the bad news is they are too slow for chemotherapy, which goes after fast growing cells.
After not hearing anything for a couple months I started to get impatient, and started looking for treatment options back in the USA. I went to the University of Iowa, to see Dr. Tom O’Dorisio who heads their NET Team with his wife Dr. Sue O’Dorisio. He explained my options to me, and in the end laid it out, “you need to get back to England and the “wizard” Professor Caplin’s team. The treatment you need is PRRT Y-90, and it isn’t available in America for NET cancer.” PRRT is Peptide Receptor Radionuclide targeted therapy. It is the Octreotide hormone with an Yttrium nuclear bomb on its back, taking the radiation right to the tumours. Luck would be on my side, because Dr. “O’do” was meeting Prof Caplin soon after my appointment in Portugal and he said he would mention me.
I was contacted by the NET team with an appointment to meet with Professor Caplin soon after my return to England where I have lived as a member of the US Department of Defense since assignment in 1998. Please note: A large part of the “delay” I perceived was surely down to the unbelievable growth of the NET team’s patient load. Prof Caplin stood up the team in 1996 with a couple dozen patients. In 2011, the patient load was close to 1500. With better awareness and standardized classification of cancer, more people are now diagnosed with NET cancer than stomach or pancreatic. Across the UK, The NET Patient Foundation keeps this population informed on treatment, diet, and research.
The plan was to get a Gallium-68 scan, which is a radioactive labelled Octreotide that highlights the locations of the tumours, but more importantly shows how receptive the tumours will be to PRRT. At this time, Ga-68 hadn’t even started clinical trials in America (it did get approval in 2015). I was very fortunate to be getting this scan at the University of Central London (UCL).
The scan confirmed the cancer had spread outside the liver (throughout the abdomen, lymph nodes, jaw, back, shoulder, lung…quite scare now!), but it also confirmed my cancer was likely to be very receptive to the Y90 treatment.
Over the next several months I would go in for three rounds of Y90, which consisted of an intravenous injection of the Y90 Octreotate that lasted about 20 minutes, and then 24 hours of isolation in a lead-lined room. It was surprisingly easy, even dealing with the radiation sickness after the procedures. The biggest issue for me was tiredness.
In 2012 the tiredness became too much to continue working. I was struggling to do even basic tasks, and no ability to concentrate. I took a big step, and “punched out” of work. After over 30 years serving the USA Department of Defence, it was time to turn in the ID card and walk away. This was a pretty low time for me. I was thinking, “at least I’ve made it until the kids are out of school. They are self-sufficient now”. It was pretty dark.
Several months later I was also diagnosed with diabetes. “Really”? Well, I can do something about that right? So, I decided I would try to control the diabetes with diet and exercise. I might be the only person I know who was excited to be diagnosed with diabetes. So I started running, and amazingly I got in control of the blood sugar levels and started to feel much better! So, I kept on running. Running my first 10Km in London for the NET patient foundation in 2014.
I was monitored every six months via CT & MRI scans, and was feeling much better than the medical reports indicated I should. During one scan session (they last a couple hours, so plenty of time to do some real thinking) I formulated a plan to form a weekday supper club band with a couple of friends I knew. We do anything from Paul Simon’s “Boxer” to Guns and Roses’ “Sweet Child of Mine”. The therapy of this music has been unreal. I never feel bad when playing with the band. We’ve had some really fun gigs! Most seats are filled during dinnertime gigs, and we have played some fundraising concerts for NET Cancer Day and Cancer Research UK. The quality of life PRRT has afforded me is incredible!
I was then still feeling good until scans in January 2015 showed the cancer was growing again. Another Ga-68 scan confirmed it was time for the next session of PRRT. This time we would use Lu177, as it was showing better results than Y90. It was laid out as a four rounds of treatment very similar to Y90. My first round was in February 2015, second was in May, third in August, and the fourth & final would be sometime early December.
In May, I decided to really get serious about getting well. What did I have to lose? I was running out of treatment options. This may be the last PRRT I could get? Your body can only handle so much radiation before your bone marrow fails.
(BTW, my nephew’s college baseball team “Coe” in Cedar Rapids, Iowa was tearing it up in the post-season at this same time. It made my recovery from that round much easier to get through)
I had been doing loads of reading. Including the book “Getting Well Again” by Dr. Carl Symington from back in the 1980’s. Diet, exercise, meditation & visualization had shown amazing results in their cancer patients. Even though this data was over 30 years old, it all made sense from a troubleshooting standpoint. I had also completed an on-line course on “life coaching”, with the hope to do some “cancer coaching” for people just like me that needed help dealing with cancer. I was understanding my mind, attitude and body better than I ever have.
In July 2015 I ran my 2nd London Great British 10Km for the NET Patient foundation with my wife Lesley. She has been there since the start! An unbelievable rock of support! What a great day! I was feeling really good!
The July 10Km was also close to the midpoint scans to check on how well the Lu177 treatments were working. They were working really well. Well enough that we started planning to hold the fourth treatment back. The mantra I was now living by was working. It sure wasn’t hurting.
So, I kept on running. Signing up for a half marathon in Amsterdam that October. I ran it with my sister. BTW; my sister was diagnosed with NET cancer after getting checked out after my diagnosis. Through the Royal Free NET team and NET Research Foundation (called “Caring for Carcinoid” at the time), she was put in touch with Dr. Matt Kulke in Boston, MA. Her cancer was found before metastases, and after removing the primary she was “cured”. Awareness works!
Shortly after the Amsterdam half marathon, my sister found out she had a place in the 2016 London marathon with a charity she works closely with. I started to think at that time, “If the NET patient foundation ever gets a place I am going to put my name forward to show what an impact PRRT has had on my quality of life, and I am going to run it with her”. It could happen right?
This summer has been an important time for PRRT. It was removed from the NHS Cancer Drug Funded list (CDF) in September due to its high cost, data on Progression Free Survival, and impact on Quality of Life. Not necessarily a permanent decision, but the timing sure wasn’t good as this decision was made at the same time clinical trials were starting in America. It only makes sense that private insurance companies could balk at paying for treatment not approved by the NHS in the UK or FDA in the USA. I also have friends who are getting the same outstanding treatment on the NHS as I am with both my corporate and retired military private insurance. The NHS does an awesome job, but this was not good news for them!
I can see the CDF’s rationale; PRRT is expensive at around £67,000 a set. In my opinion there were two matters not really considered as part of their criteria. First, is progression free survival (PFS) must surely also be affected by the overall fitness (mental and physical) of the patient, and I have been proving this to myself for the past couple years. But it is the 2nd matter that could be the biggest game changer NET cancer patients have ever had. That matter is Immunotherapy, and it is showing tremendous potential with not only managing NET cancer, but also it is bringing the “C” word into the picture. The “C” word being CURE!
I’ve never really accepted “incurable” as an option. But now, I’ve heard doctors in our community start to whisper (look at minute 15) this “C word”. This means PRRT is no longer just an expensive palliative care option. It is the only option for some of us to get to the not too distant future only a few years from now where immunotherapy will be ready for prime time. The hope this instils is epic!
In November the NET Patient Foundation newsletter came out, and I saw the notice about the spot in the London Marathon. I put my name forward. I knew there were loads of supporters of our cause that would love to run the marathon. Some of the doctors and research scientists in our community not only work tirelessly for a cure, but they somehow find time and energy to do amazing challenges like swimming the channel to raise money for research. I would have been totally cool with supporting them if they were selected.
In early December I met with Professor Caplin to decide on the 4th round. In his opinion, “it wasn’t needed”. The MRI & CT scans showed we were back in control of the disease. He seemed impressed I had run a half marathon in October, and I should “continue to do whatever it is I was doing”. As he was looking ahead to when we would meet again I started to guess he was going to pick sometime around the end of April or beginning of May, which would be right after the London Marathon. And he did, so I informed him of me putting my name forward.
December was also looking much better, as our first family wedding was on the 19th and our entire family would be here for the event and for the Holidays! Have I mentioned “quality of life”?
On the way home I sent an email off to Catherine Bouvier (CEO of the NET Patient Foundation) to see if they had selected anyone. She informed me, “the board of directors had selected me on the PRRT angle, and she had just emailed me to see if I was I still interested? This was a big deal for the charity as it was their first and only spot after applying for 6 years”.
I’m absolutely ready to give it my all, and I’m all signed up!
I am very thankful for to have been given this opportunity to represent our cause, and I’m thankful for the tremendous team of nurses, doctors, researchers, charity organizers, and my family that look after me.
So there you go! That’s my NET cancer story. I’ll be ready! I can’t wait!
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