My Kidney Cancer Adventure
Last Update January 2020 Cancer Discussion Group - Knowledge Share Last Update July 2019
I won't bore you with my story of discovery, and then surgery adventure. I would like to share though, that after talking to three highly rated and experienced Oncologists, starting web site research, and reading the first book (mentioned below), it became pretty clear to me that the "Standard treatment", should metastisis be discovered following removal of the kidney, is pretty consistently prescribed, depending on the circumstances. In fact, at this point it sounds like the first and second level (if first doesn't work, or stops working) are pretty "standardized" for many of the common organ cancers, while very different for each organ. That means that the specific doctor, or group, or "Team" is less important during the monitoring and initial "standard" primary treatments. The major focus is making sure that any metastisis is discovered as early as possible. The real consideration and need for expertise, and knowledge about current advances and progress, comes when the opportunity and\or need for Trials beomes important. That's normally after the "Standard" appraoches have been tried, and the fight must continue. While some Trials are available even before organ removal (at least for kidney right now), and there are many benefits to be realized, this is where the doctor's expertise, organization and knowledge about current Trials and the latest successes becomes critical. As you will see in my Cancer Discussion Group - Knowledge Share website, there are huge differences between Surgery, Chemotherapy, Radiation and Immunology. There are many experts in each field, but they will tend to know their field, as each of these have their own history, progression and trials. This is when the Group think is most critical. This is also when the need for the patients understanding and education becomes critical in order to ensure they are considering all the options, not just the radiation, chemo or Immunology options. I believe this complexity (as you'll see as the Knowledge Share is elaborated) is what drove the need for a new role in the Cancer Treating Organizations called the "Navigator". You'll see, as we build out the Knowledge Share site, it's the perfect name for a more than full time job.
July 2019 Update: Two presentations by Dr. Rodolfo Bordoni, Director of the Clinical Research Program for Georgia Cancer Specialists at the Cancer Support Community in Atlanta. The June presentation was Precision Medicine and today was Immunology. He is involved in Trials and is very up to date in his attitudes, perspectives and the latest progress. Unfortunately for me he specializes in Lung Cancer vs. Kidney Cancer. This is a dedicated man, and the CSC is an impressive organization that provides support to all cancer patients, caregivers and family members, free of charge. They have a large library, great education and group meetings, and many "Navigators" to help you get and learn what you need to know, no charge. I also had an annual physical this month, and the first major change as a result of the Whole Food, Plant Based Nutrition Program was an A1C of 5.5. The Type 2 Diabetes Designation related to a 2008 level of 8.0 is a matter of history only. This is typically the first thing affected by a significant change in diet. I hope blood pressure is not far behind. [Balance of Adventure History Below]
Whole Food Plant Based Diet
Dr. Caldwell Esselstyn's presentation, The Nutritional Reversal of Cardiovascular Disease: Fact or Fiction at The Real Truth About Health Conference sponsored by the Hippocrates Research Institute in NYC in Febuay 2018 is a "Must Watch". There were 35 authors and 75 presentations during the 10 day, FREE conference. The next one is in February 2020, Long Island, NY. All of these Authors\Presenters were Doctors, Surgeons or Nutritional Scientist with many years of experience. The goal is to avoid the diseases, not treat them. Obviously many folks are not supportive either through motivation or lack of training and awareness. You can subscribe to the Conference, and they will send you one of the 75 videos a day for 75 days.
Many (if not all) are available on YouTube and NetFlix. Once you bring up the first on YouTube based on the link above, many more of this conference, and other sources, will be suggested by YouTube. My summary, based on the 5 I have watched so far (and other papers and videos you will stumble upon), is, consider this: Take a map of the world; plot each unique culture based on nutritional intake, climate, location, environment, culture. Now on that same global map, plot the occurrence of diseases (including coronary and cancers). This was the approach of "The China Study" by T. Colin Campbell (another great read for cancer research). We (the USA) have the highest match in all categories based on SAD (Standard American Diet). And in all cases there are countries (several to many) that have no occurrence of many\most of the diseases. The most important discovery was that countries that had very low rates of many diseases historically (Japan comes to mind), have, since the mid 20th century, had significant increases in these diseases. This is the point in time when they started to adopt the American dietary approach. This phenomenon was revealed many times. The research and statistics in the presentations are dumbfounding. It's not old age that is doing us in! I'll let you know in June, but back to Kale and YouTube for now.
Reading List (Cancer Reading List at Discussion Group Site)
Case History - the Adventure
January 2020: CT Scan and Follow-up result - Time for Action? Having only read the report, it appears that Lung nodules referenced and inert before, are starting to grow. Follow-up is next week. I have started to review the SmartPatients.com website to see what real patients have to say about real immunology treatments. I also launched a query to identify the best Oncologist in the area (North Atlanta & Hall County) with interest and experience specifically in Renal Cell Carcinoma with Metastisis in the Lungs. Lung Cancer is still the largest killer and most challenging Cancers to effectively treat. I have been sidetracked for the last view months dealing with understanding Medicare options and plans. It may be more confusing than cancer treatments! I continue to have a strong desire to form a Research\Discussion Group to meet, discuss and collaborate on the many related topics.
June 2019: CT Scan and Follow-up result - stable. No change in six months. No cancer, no treatments, and see you in January 2020 for another CT Scan. I'm attending Cancer Support Groups at the Cancer Support Community in Atlanta, and Northside Hospital in Winder. I'll add Northeast Georgia next month when we get back from Cooperstown. I have started the webpage, and am rereading the source material to update the Immunology page and other supporting web pages. I've also joined several face book groups. The goal is to find other kidney cancer patients in North Georgia to start a trials research group.
February 2019: Had a most relaxing weekend at a new event for us. We attended the Savannah Book Festival. They are held around the country to promote books, and are organized and sponsored by C-SPAN. We watch their programs all weekend as they focus on non-fiction author interviews, which is where we get our reading list from. In addition to the beautiful town of Savannah Georgia, full of Moss covered Oak Trees and Town Squares, there was an author which was exceptional. We listened to Charles Graeber who had just published "the Breakthrough", an excellent book on immunology that he had spent several years investigating: the people, discoveries and progress, of this most exiciting field. After having spent 3 months reading several books on the history and treatment of cancer, his presentation, followed by reading his book, really drew my focus on the possibility, and more importantly, the differences between the "Standard" Treatments: Surgery, Radiation and Chemotherapy and this "new" approach to helping the body defeat the diseases we encounter. Turns out, this is much broader than cancer, as it impacts all the diseases you have ever heard of. The early cancer trials I read about presented 3-4 months of torturous treatments and side affects, and the benefits were a 3-4 months extension of life. Granted these patients were beyond any "standard" treatments, as they had tried them all, and were near death. Then I started reading about immunology trials where 20% of the participants were "cured". They didn't use that word, but there was no trace of cancer, tumor or otherwise. 30% of the participants had a positive response. This means, in clinical terms, that their tumors had shrunk or disappeared at least 50%. The other 50% had less to no response. Yes, there's still a lot to learn, but not near as much as there was 20 years ago. My focus is all Immunotherapy now! Down 35 pounds, 3.6 miles a day uphill; feeling great! Blood Pressure, with 3 drugs, still all over the map! Working with local Navigators to find local Immunology expertise and Trials knowledge. An Immunotherapy Trial will be my next treatment, when\if one be required.
December 2018: The CT Scan shows 3 of 6 small nodes (3-5mm) in the lungs have changed; one from 2 > 4mm; one from 3>5mm and one from 5>7mm. These are too small to do anything with, so we will continue to monitor via CT Scans. Olmesartan added and Losartan dropped. Have been on the Whole Food, Plant Based Nutrition program for 5 weeks at this point, after reading Dr. Caldwell B. Esselstyn's book "Prevent and Reverse Heart Disease". I was completely wrong about the Protein deficiency, as I feel great without any meat, dairy or oils. I discovered the Hippocrates Health Institute website. They sponsor an annual, free Health Conference. They had 30+ medical doctors and science professionals give 70+ presentations in 2018, all of which were video taped and available for free on You Tube, NetFlix and their web site. This is a wake up call, and will push my development of the Knowledge Share site.
November 2018: A follow-up with the Nephrologist in late October reveals Creatinine 1.63, eGFR 42.4 & Glucose 252. Ok, all of them have continued to go in the wrong direction, and they were out of the range when the left kidney came out. In addition, blood pressure is high and my lower legs look like someone blew air into them. Need to change the meds. Replaced the Amlodipine 10MG with Losartan 25mg. After a week the pressure was still running 150/86, so go to 50mg on Losartan. It's actually worse now, 170/94, but the legs are back to normal. I also had a knee problem after returning from Maine (I mostly just drove the beautiful roads). This combination of issues got me back into the research mode. OMG! If you haven't watched Forks over Knives (YouTube), you need to, desperately! That leads to more Doctors, and organizations, with the same message: We are killing ourselves!!! It is unbelievable (not really based on the other industries and organizations in our country today) that this is not being promoted. Please see and review the links below for some really great news. If you're a cancer patient, it may save your life; if you have coronary artery disease (and you do!), you're in for a huge awakening! I'm starting on the "Whole Food Plant Based Nutrition" program as of yesterday. What we don't know is killing us.These are not quacks selling drugs; these are, for the most part, so far, Cardiologist and Surgeons with real trials and experience that will blow your mind! I'll have a CT Scan review in a few weeks. By the next CT Scan and nephrolgy follow-up (June or so), I'm planning to be completely off all my daily medication. It happens! Alot!
July 2018: The June CT Scan was clear, next scheduled is Dec 2018. Exercise routine is back to pre-surgery levels. I'll be adding weights back in, starting next week. I was contacted through the Inspire Team (Inspire.com) about additional trials. I believe that if\when the next step is required due to the discovery of lesions, the prescribed treatment is pretty well pre-defined. Unless you want to immediately participate in a trial (huge financial benefits as the drugs are free), you will get the "standard" treatment, depending on where the mestasis is discovered. This is the reason I decided upon the most convenient Oncologist. All the advertising about Teams of Doctors and focus are critical after you've already had the first 1-3 step treaments, and still need more. Until that time, you have to progress through 1-3. Not surprising then, I haven't spent much time investigating, as steps 1-3 will consume 1-5 years, so the current trials that will be relevant to me haven't started yet. However, I am still very interested in finding or creating a physical study group.
May 2018: The standard routine with no identifiable metasis after having a kidney removed, is a CT Scan every 3-4 months for 2 years, or until some lesions are discovered in the other kidney, lungs, brain, or other area of the body. My first Scan was February 14, 2018, and I'm happy to report no evidence requiring investigation. I had my Prostate removed in 1998 with cancer, also with negative margins (meaing no signs of metasis, or spread outside of the affected organ). That hasn't showed up again either!! In the interim, I did a round of research and decided I would adopt a vegetarian diet approach (started in early February). The primary driver was the YouTube Video What the Health?, along with other YouTube videos related to Kidney Cancer treatments, trials and research, as well as Veganization. At any rate, after 3 months, I felt like I was not completely stable, and tired easily. I have still not reached my pre-kidney removal levels in my daily exercise routine at the gym. After doing some additional research on Protein, I believed I was not getting enough of that. Essential for muscle maintenance (oh Yeah, the heart is a muscle), I have (as of last Saturday) added chicken and fish back into my diet. I already feel somewhat better, and will renew my daily exercise routine tomorrow (I have been on a break due to a vacation trip and colonoscopy). Next scheduled Scan will be June 13th. I'm convinced there are strong associations and impacts between diet and health, and a huge obstacle, at least in this country, to clear research about preventing major diseases. We (the US) are focused on treating medical conditions, not advoiding them. This is a medical industry\profitization\economic issue. Looking at Germany & Australia's efforts, specifically studies related to marijuana derivatives and children with Epilepsy, I have added additonal research goals to my own efforts related to finding the organizations and groups that can bring some light to a broader cancer phsysiological avoidance perspective. These are the kinds of issues I wish to address with, and through, a physical Support Study Group. I'll let you know what I find in the mean time. Stay tuned, and let me know your involvement in the subjects, particularly if you live in North Georgia.
Corrections, questions, suggestions, problems or recommendations are always welcome. Please email Dan@GallaghersInGA.com or