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.
Your case is very different from the OP and the post you're responding to though. They are discussing the benefits and drawbacks of screening for a lot of stuff on an otherwise healthy person with no symptoms or complaints. In your case you unfortunately have had something very wrong with you and your symptoms were misdiagnosed.
> Opinions like this are dangerous for intelligent people.
I also want to add this was quite rude and conceited.
> I also want to add this was quite rude and conceited.
Personally, I didn't interpret the poster's opinion as rude or conceited. This is hacker news. It attracts a demographic of intelligent people who are used to seeing the world without blinders on. It makes sense to me that someone who identifies as a "hacker" would be offended by the idea of withholding information.
Tumors are actually a great example of over testing. The key is, you don't know what would have happened in the alternate universe, but when you say the word "tumor", you just assume it's a super dangerous thing that would have inevitably killed you.
The truth is, when we do a careful autopsy of old people who died of non-cancer diseases, we usually find a ton of hidden tumors that have just quietly been lying dormant, not really harming them. In those cases, ignorance is bliss because doing anything to remove the tumors only could have increased their risk of death given that the tumors didn't kill them.
We don't know what bucket of people any one person is in, we can only look at overall statistics.
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.
Blood tests really don't tell you yes or no. They give you quantified biomarker concentrations which are correlated with certain types of cancer. In some cases the diagnosis is clear, but often it's more of a gray area.
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 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.
Thanks for sharing. You got FDG PET ("older") as well as FAPI? Are you in the US? Curious if FAPI is already in wide use.... does FDG not work that well for NET ?
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. :-)
Strange to see images from my specialty here on HN, but no. On the right hand side you have a classic planar OctreoScan (and from posterior view at that). What you have on the left side is a 68Ga-DOTA-(TOC/NOC/TATE) scan, not the new 68Ga-FAPI scan which I believe is only available in Heidelberg, Germany for now. While 68Ga-DOTA-(TOC/NOC/TATE) are probably not as good as 68Ga-FAPI (we don't know that yet, pending research) it is markedly better than OctreoScan, especially for small primary lesions, as is often the case in NETs. Source: I am an MD specialized in nuclear medicine.
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!
Minor side note: I did that too but found that institutions were locked down and could not access my public server, and they wouldn’t accept a usb drive with the same data. They were only set up to receive FAT dvds - and I spent many, many hours duping DVD’s for doctors in their waiting rooms.
The USB thing might be a security policy in action. The DVD (and that's weird, because I think I've never seen DVDs, but lots of CDRs) is probably a historical thing related to the DICOM Supplement 19 General Purpose CD-R Image Interchange Profile standard.
Good luck with the surgery! You probably got Octreoscan which is used for NET - it's SPECT imaging which is generally worse that PET, but (until now) there wasn't a good PET tracer that works in NET. Awesome to hear a story of how this new tracer could really help patients.
Sorry, this is not true. 68Ga-labelled DOTATOC, DOTANOC, and DOTATATE are used diagnosis and therapy of NETs for more than 10 years. They are widely available in Europe and in some major US centers. If the new 68Ga-FAPI will be better remains to be seen, I suppose the Heidelberg group will publish some research soon.
I just took him at his word that it was FAPI & was asking if it is available in the US - also I favor PET as a modality b/c it's quantitative. No judgement on a particular tracer.
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.
I've had a couple NETSPOT (w/gallium68 dotate) scans this year after surgery in January to remove mass revealed it was a NET. Would be interested in chatting about it. I haven't requested the images yet, but it sounds interesting.
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.
Unfortunately, there are still many cancers detected far too late for effective treatment. It sounds like you were indeed fortunate to have a less aggressive form. AI for cancer screening generally falls under the category of "Computer-Aided Detection" or CAD. The commercial and academic CAD efforts tend to be organized by the primary anatomical site of cancer and the detection method (e.g. X-Ray, CT-Scan, PET, ultrasound, blood test) . Was your primary the pancreas or intestine? Are you wanting to contribute to an imaging detection method or something else? I might be able to help you identify someone working in the area depending on your goals.
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?
There currently is no good candidate for a imaging modality that can be used for a general screening program to find the top 15 to 20 cancers and I am unaware of anything on the near horizon. Such a scan would have to examine the neck thru the groin area to cover even just 10 out of the top 15 or so cancer types. Since screening involves patients with no symptoms, most patients won't actually have any disease and thus the imaging must be inexpensive, must have high sensitivity, must have a reasonable false positive rate, must involve little to no radiation, and must not require injection of contrast agents or radioactive tracers. That eliminates all of the imaging modalities I can think of that can examine large areas of the body for cancer. The best we have today are compromises on these criteria for patients that are at relatively high risk, such as a smoker or a cancer survivor, or for highly focused screening programs such as what we have for breast cancer.
I'm am sorry to hear that. I don't know about companies, but cancer screening with machine learning is a very active topic in academia at least. Other topics include outcome prediction, and analysis of treatment alternatives.
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.
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"
