Randypea

This study shows the combination of Metformin and Everolimus( Rapymyacin) is more effective at cancer than either alone. More research is needed. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7464161/ I have NET cancer and am taking Everoliumus. I am thinking about recruiting other NET cancer patients to do an informal test of Metformin and Everolimus( Rapymyacin). Is there any structure or web site or other tools to help us with this?

Opinions like this are dangerous for intelligent people. I was falsely diagnosed by my doctors for 10 years who were gun-ho on not "over testing". They told me my symptoms were just IBS and there was no need for additional testing. I had to find a doctor who would do more tests and immediately they found cancer in my intestines, a softball-sized tumor in my liver, and multiple other tumors. Denying intelligent people knowledge is a mistake; we just also need the information need to process the data provided. But I do agree there is a section of patients who will have trouble using the information they might receive.

Yes let's chat!!! Send email to randypea at gmai!.c0M

You are correct it's only in the last several years this Gallium 68 scan has been available in the US, but was available in Europe long before - like many cancer treatments.

Yes I have all the Dicom files and put all the images on a password protected server so I can share with prospective surgeons. This really helped me find the best possible surgeon. THANKS!

Yes it was an Octreotide scan.

True, if the level found is 150% of normal, it's a problem. In my case, I was misdiagnosed for 10 years. When my docters finally ran the test for the right biomarkers, they found levels 50 times normal. So maybe the tests need wider margins to screen out false positives.

I am in the US and FDG PET does not work for NET. The "older" scan was Pet radiolabeled with indium-111. Comparison is here: http://prntscr.com/o02jsg Left is the newer scan, which uses Gallium 68. The primary tumor is uppermost right side, liver metastasis is left side, and small lower lighted up areas are lymph nodes. All will be removed soon. Lit up area below is the radiotracer in my bladder before urinating. :-)

There are a number of different blood tests for these 30 cancer types, each of which can detect a high likelihood of cancer. Each blood test tells you YES or NO. Then this type of radiotracer scan will tell you WHERE. Toray Japan is developing this test: https://asia.nikkei.com/Business/Companies/Japan-s-Toray-see... Until this is available you could ask your PCP for the corresponding blood test for all the types of cancer you want to check.

I was diagnosed with NET cancer recently and my doctor incorrectly ordered the older radiotracer scan. It only showed 1/2 of my tumors, missing the most important primary tumor. This newer scan/radiotracer showed double the number of tumors including the most important step of finding the primary. I will soon have cytoreduction surgery to remove the tumors. Unless you have other biomarkers showing cancer, the issue for this scan is cost - $2-5K. You would not do it casually. Contact me if you want to see a side by side comparison of this new scan beside an older one.

My cancer was finally found in my intestine. This is another opportunity. My primary oncologist and local surgeon were telling me the primary tumor, which has metastasized to a very large liver tumor, could not be found. I did my own research and found they had ordered the wrong type of imaging scan. Only after I pushed to have the correct scan (Gallium 68 PET/CT scan) was the primary tumor found. This was a "lack of information" for my local oncologist. Computer-aided diagnosis would have helped him. An additional new symptom (flushing) appeared and my PCP recognized a specific cheap blood test was needed that led to the cancer being found. I am happy to contribute to an imaging study. But I want to work on cancer screening. What kind of automation/screening would be needed to prevent 10 years of misdiagnosis by my PCP? ... not only for this type of cancer but for all of the top 15-20 types of cancer. People are not being screened. How can we make screening affordable? And how can we raise awareness of possible misdiagnosis and or affordable screening?

Thanks. Actually, my cancer is very weak. On a scale of 1 to 10, it's aggressiveness is 1-2. But one of the liver tumors is very and will be removed soon. I am starting a side project to work on cancer screen if anyone can point me to anyone willing to partner on this, I would appreciate the help.

I was recently diagnosed with neuroendocrine cancer, which my PCP had been misdiagnosed for 10 years as IBS. This is more the norm than the exception for people with this type of cancer, Steve Jobs included. It's a perfect example of where AI can likely diagnosis what my PCP could not. AI tools need to find cancer problems to solve which are more suited to their capabilities. e.g. does anybody know of a company working on "AI for cancer screening"? This is desperately needed and would have helped me.

so they can manipulate and shape your perception.'..... then group you together with people like you and sell those groups to advertisers, claiming they have some exclusive access to groups like "yoga-loving cat owners"