Cancer Adventure .

Kidney Cancer Adventure     Last Update Jul 16, 2018

Kidney Cancer Study Group Meetings

Hall County or North Atlanta

       If you or someone you know has been diagnosed with Kidney Cancer, I'd like to recommend that you, and they, read ImmunoPatient by Peter Rooney. It provides a great framework for understanding the terminology, sequence of "expected" events, and provides a great sense of hope. He participated in a post surgical treatment, and then a Phase III trial for Sunitinib, that completed in 2016.

        The picture is from my last year of work. I retired in May 2015. It's a good thing, as I needed time off to have triple bypass, open heart surgery in August. I recovered, and built a real appreciation for not working. With so much time available, I'm now working a bout of ccRcc, kidney cancer. Discovered in September 2017 through imaging, the left kidney was removed November 30th. Turned out to be Stage III, with no indication of metastisis.

        I thought I would add this page to my wesite, as I would like to start a Kidney Cancer Support Group. There are none, as far as I can tell, anywhere in Georgia. I've talked to two Oncologist (one more to go) in order to select one to move forward with. (have since settled on Dr. LoCicero with the Longstreet Group). Neither of their Nurse Navigators thought there were any kidney cancer specific groups that meet physically, only on-line. If you know patients, or care-givers, dealing with Kidney Cancer and living in North Georgie, please ask them to call me about this group. I'll be adding Information to this page that I find about trials, and those that are germain, I'll track and update. I'll also list the useful websites that I have used to get educated on the topic. There are also several large organizations involved in various kinds of efforts, that have annual, multi-day educational sessions. I'm going to try and combine my trips to include these sessions, and hit Street Rod Shows in route. Might also combine the Kidney Cancer Support Group with Genealogy, as there is some relationship to some Kidney Cancers and heredity, and I've just sent my DNA for testing. (got that back, and no health information, and no ancestor surprises).

        Just a quick update (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, it was obvious 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 directives 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.

        (July 2018) The June CT Scan was clear, next scheduled is Dec 2018. Added chicken and fish back into the diet for protein, and the exercise is back to pre-surgery levels. I'll be adding weights back in starting next week. I was contacted through the Inspire Team ( 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.

Helpful Websites

Education Videos

Kidney Cancer Drugs and their Status

Phase III Trials - with Results

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