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  1. I noticed a few minutes ago that the JimJimJimJim YouTube Channel has clicked up 50,000 views. That's a lot of help and comfort that men and their partners have found in understanding advanced prostate cancer - their disease, their treatments, and the journey of others. The top topic - Gleason score in advanced prostate cancer Click the picture to view the video. Closed captions Cc for the hard of hearing. The top story - David's story - 7 years with metastatic prostate cancer Click the picture to view the video. Closed captions Cc for the hard of hearing. The top doctor - watch time - Dr Mark Moyad Click the picture to view the video. Closed captions Cc for the hard of hearing. The top doctor - views - Dr Alicia Morgans - Bones and advanced prostate cancer Click the picture to view the video. Closed captions Cc for the hard of hearing. Click the picture to view the video. Closed captions Cc for the hard of hearing. Click the picture to view the video. Closed captions Cc for the hard of hearing. Click the picture to view the video. Closed captions Cc for the hard of hearing. Click the picture to view the video. Closed captions Cc for the hard of hearing. Please continue to Like, Share and Subscribe to our YouTube Channel. It helps others find the videos they need. Jim
  2. No-one told me about metastatic spinal cord compression. I want to warn men with advanced prostate cancer about the risk of metastatic spinal cord compression so that you don't end up like me. What is metastatic spinal cord compression? This happens when cancer cells grow in or near to your spine and press on your spinal cord. It's not common, but it is important that you’re aware of the risk, what symptoms to look out for and how to get help. What is my risk of developing metastatic spinal cord compression? You need to be aware of it if you have prostate cancer that has spread to your bones or has a high chance of spreading to your bones. Your risk of metastatic spinal cord compression is highest if your prostate cancer has already spread to your spine. What are the symptoms of metastatic spinal cord compression? Prostate Cancer UK has published an excellent fact sheet on metastatic spinal cord compression. The symptoms of metastatic spinal cord compression are listed in this fact sheet. Click here to read the Prostate Cancer UK fact sheet on metastatic spinal cord compression. [If that link has stopped working, go to prostatecanceruk.org and use the Search box to search for: spinal cord ] What should I do if I get symptoms of metastatic spinal cord compression? If you get any of the symptoms listed in the fact sheet, you should get medical advice straight away. Don’t wait to see if your symptoms get better and don’t worry if it’s an inconvenient time, such as the evening or weekend. The sooner you have treatment, the lower the risk of long-term problems. Take the Prostate Cancer UK fact sheet with you to the doctor or hospital as many doctors are not aware of metastatic spinal cord compression. My story I had metastatic prostate cancer which had spread to my spine. I was living at home. I was able to walk and drive a car. On 16 December 2017 I contacted my medical oncologist with symptoms of metastatic spinal cord compression. He admitted me to hospital immediately. It was too late in the day to get an MRI done at that hospital so I was transferred to another hospital for an emergency MRI during the evening. I saw the neurosurgeon at 9am the next morning and he operated on me at 1pm that afternoon. Despite the operation, my knee and ankle muscles have been damaged. As a result I have limited mobility. I only stand for short periods and can only walk short distances with a walking frame. I need assistance in getting dressed. I need someone to wipe my backside when I have a shit. I use an electric wheelchair and get transported in Maxi Taxis (disability taxis). To get the nursing care that I need, I am now living in a nursing home where most of the other residents are elderly and demented. What a change in my quality of life in a very short period!! In hindsight, had I been aware of the symptoms and risk of metastatic spinal cord compression, I would have sought medical advice much earlier and received early treatment which most likely would have avoided the problems that I am now suffering. The purpose of my post is not seeking sympathy or complaining. It is what it is. The purpose of my post is to make other men with metastatic prostate cancer aware of the risk.
  3. Since the start of this century there are been a number of proposals to establish a Proton Beam Therapy Centre in Australia. The New South Wales Government has done a number of feasibility studies for a Proton Beam Therapy Centre in Eastern Sydney. The South Australian Government put forward a proposal for a Centre in South Australia. In 2014 an alliance between a commercial company, Proton Therapy Australia and Mater Health Services, Brisbane announced the building of Australia’s first proton therapy facility. On 8 August 2016 the Victorian Government announced the establishment of a National Proton Beam Therapy Centre to be located in Melbourne's Parkville Medical Research Precinct. It will be operated by the Peter MacCallum Cancer Centre with assistance from the University of Melbourne and other partners of the Victorian Comprehensive Cancer Centre. Proton Beam Therapy is mainly used for adult cancers in the head and neck and cancers in children, due to its precision, reduced toxicity and reduced risk in causing cancers later in life. Take a deep breath Proton Beam Therapy is the much hyped latest and greatest technology and is extremely expensive. But is it any better than existing conventional radiation treatments? At the moment there's little scientific evidence that Proton Beam Therapy is better than existing conventional radiation treatments. In June 2016 at the American Society of Clinical Oncology (ASCO) Scientific Meeting data was presented from the very first randomized clinical trial of three-dimensional proton beam radiation therapy (3D-PBRT) compared to intensity-modulated radiation therapy in the treatment of any type of cancer - non-small cell lung cancer. The "New" Prostate Cancer Infolink commented: "Obviously this is not prostate cancer, but the outcomes of this trial do seem to confirm the suggestions that PBRT is not necessarily any better than other modern forms of conventional radiation therapy in the treatment of at least some common forms of cancer." Click here to read the The "New" Prostate Cancer Infolink article.
  4. Nanoparticles are microscopic particles that measure less than 100 nanometres. A nanometre is one thousand-millionth of a metre ( 0.000000001 m). Scientists have developed nanoparticles that can target cancer cells. When cancer cells take up ordinary nanoparticles, they often enclose them in small compartments called endosomes. This prevents the drug molecules from reaching their target. Researchers from Ohio State University in America have developed a "nanobomb" which can explode the endosome compartments and release the drug molecules. Click here to read a news report about the "nanobomb" in Science Daily. At this stage the nanobomb has been tested in animals only, not humans.
  5. With increasing options to treat advanced prostate cancer, there is no clear agreement on the order in which these treatments should be given. I attach a chart prepared (following the STAMPEDE clinical trial which recommended early ADT and chemotherapy for certain patients) by an American oncologist setting out his view of what is currently best clinical practice in America. In Australia our options are more restricted: Abiraterone and Enzalutamide are only available on the Pharmaceutical Benefits Scheme after chemotherapy and Provenge is not available on the Pharmaceutical Benefits Scheme. Oldtimer's Disease - I can't remember which publication I found this table in. A prize for anyone who can tell me where it came from.
  6. Men with PSAs over 100 face psycho-social and treatment issues that may be different than most of us with Advanced Prostate Cancer. MaleCare, a US Prostate Cancer Support organisation, has started an online group called PSA Over 100. It may be of interest to those of our members who have very high PSAs. You can join by sending an email with the word subscribe in the subject and body to: psaover100-subscribe@yahoogroups.com I met a man at the recent Prostate Cancer Research Institute Conference in Los Angeles whose PSA had peaked at 2276. Currently it's 556 having gone up 70 points in the last 2 weeks. It's difficult for most of us to comprehend PSA levels like that.
  7. Click on this link for useful information about how advanced cancer evolves and the effects that this has on treatment
  8. Thanks to Chuck Maack for alerting us to this. Previous clinical trials with antibotics (intended to target cancer-associated infections, but not cancer cells) have already shown positive therapeutic effects in cancer patients, although no-one considered their ability to eradicate cancer stem cells. Researchers have shown in laboratory studies that 4-to-5 different classes of antibiotics can be used to eradicate cancer stem cells in a number of different types of cancer, including prostate cancer. They suggest that it may be possible to treat cancer like an infectious disease, by using the antibiotics for anti-cancer therapy. The antibiotics inhibit mitochondrial biogenesis which is necessary for the cancer stem cells to make clones and survive. (Biogenesis is the production of new living organisms). Many of these antibiotics are non-toxic for normal cells. Since these antibiotics are already approved for use in humans, trials of new treatments using them should be simpler than with new drugs. Click on this sentence to read a report about this research.
  9. Paul Edwards

    ADT affects the brain

    Cognitive impairment can occur in cancer patients who are treated with a variety of therapies, including radiation therapy, hormone therapy, and chemotherapy. After chemotherapy treatment it is commonly called "chemo brain." Signs of cognitive impairment include forgetfulness, inability to concentrate, problems recalling information, trouble multi-tasking and becoming slower at processing information. The number of people who experience cognitive problems following cancer therapy is broad, with an estimated range of 15 to 70 percent. There have been several studies analyzing this side effect in breast cancer patients, but few have investigated cognitive impairment following androgen deprivation therapy (ADT) for men being treated prostate cancer. A new Moffitt Cancer Center study indicated that men who are on ADT have greater odds of experiencing impaired cognitive function. In this study, researchers used formal tests to compare the cognitive ability of 58 prostate cancer patients on ADT to 84 prostate cancer patients not on ADT, and to 88 men without cancer. The researchers also reported for the first time a possible genetic link among those individuals who experience cognitive impairment whilst on ADT. They found that patients who have a particular version of a gene called GNB3 were 14 times more likely to suffer from cognitive problems on ADT. The researchers suggested that doctors: before starting ADT, should discuss the risk of changes in cognitive functioning with their patients; and after starting ADT, should also ask their patients if they suffered cognitive impairment with a view to referring them for assessment and treatment as needed. I wrote to one of the researchers and asked what treatment was available for prostate cancer patients on ADT who suffered cognitive impairment as a side effect. This was his reply: “Unfortunately little research has been done on ways to improve cancer treatment-related cognitive impairment. But some recent studies have suggested that "brain training" may improve cognitive function...and [there is] some preliminary evidence suggesting benefits to cancer survivors who had cognitive impairment. There are also medications that could be helpful, such as stimulants (e.g., methylphenidate, modafinil). It is also recommended that other issues that could contribute to cognitive decline be adequately addressed. For example, depression or sleep problems could easily worsen cognitive functioning and are usually treatable. Exercise has also been shown to be very important for cognitive function. I would recommend first addressing the issue with your oncologist or perhaps requesting a referral to a neuropsychologist or another provider who may be able to make recommendations tailored to your situation.” Brian D. Gonzalez et al Course and Predictors of Cognitive Function in Patients with Prostate Cancer Receiving Androgen-Deprivation Therapy: A Controlled Comparison http://jco.ascopubs.org/cgi/doi/10.1200/JCO.2014.60.1963
  10. Paul Edwards

    Complementary therapies help

    Research reported in Medical News Today found that: Patients who supplement conventional medical care with therapies such as acupuncture, yoga, chiropractic, biofeedback, nutrition, massage, and mindfulness have better outcomes in the treatment of chronic pain, depression, and stress. Patients who used these therapies became better at managing their own health and care, and more willing to do this. Click here to read the report.
  11. The journal UROLOGY has published a number of online presentations by 5 leading medical oncologists and urologists looking at the new options for the treatment of patients with Metastatic Castrate Resistant Prostate Cancer. Whilst all of these presentations are of interest to men with advanced prostate cancer, the 2 roundtable discussions (Clinical Treatment and Patient Treatment) are especially recommended. Click here to view the presentations
  12. A friend of mine was diagnosed years ago with cancer and it's been a pretty devastating experience. They always tried to stay upbeat, but it is was still tough to know that all I could do for them is to be there for them, as I didn't really have any means to help them bare the burden financially. It's years later now, but I still find myself looking online for different tools and things that could have helped Korbin in some way. Also, writing countless papers for my BA in Health Policy & Administration made stumbling across these tools a pretty common occurrence. I thought as my first post it would be awesome to share a few of these tools with! Here are a couple of the really neat ones. http://www.mylifeline.org/...This is a website where you can post any tasks that you are unable to accomplish due to the effects of your treatment, you're friends can chime in and let you know if they can lend a hand to help you with anything! iChemoDiary – Treatment Specific This is an app service helps you record your chemotherapy schedule, treatments and symptoms such as nausea, vomiting, temperature, lack of appetite and more. You can also add notes of things that you'd like to remember to tell your doctor. http://www.lifecreditcompany.com/- This is a service that helps you get money to live a quality life while you're undergoing cancer treatment. They help you get money for treatment, living expenses, etc. by taking out a loan against your life insurance. http://www.donationto.com/ - This is an awesome website kind of like Kickstarter that helps people crowdfund the capital needed to finance their treatments. I truly hope that some of you find this helpful. If you know of any similar tools, please post them below.
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