Cancer ABCs From Surviving To Thriving - How to Thrive with Cancer

NBA superstar Grant Hill, also an Atlanta Hawks co-owner, and African American health advocate, has teamed up with  Dendreon to combat the prostate cancer racial disparities experienced by African American men.  He discusses, along with Cancer ABCs CEO Joel Nowak, how men, particularly African American men, can combat the disparities.  They focus on how a man can develop their own playbook to beat prostate cancer,  what role a man should play with his doctor and the importance of becoming an educated patient.   Mr. Hill shared a program he has started with Dendreon called Start Strong.  Start Strong (www.startstrong.us)  is focused on raising awareness of the racial disparities in prostate cancer incidence and the importance of talking to your doctor about the best treatment options.Please note that during the interview, Mr. Hill provided the wrong web address for the Start Strong Program.  The correct address is www.startstrong.us. Support the show

Overall survival and cancer-specific survival for those with node-positive prostate cancer treated with surgery lived longer than those who elected radiation treatment.  Men diagnosed with node positive prostate cancer need to decide if they want to include a targeted treatment to their prostate gland along with a systemic treatment like hormonal therapy.  Most men who elect to include a targeted therapy will choose between either surgery or radiation.  A retrospective observational study concluded that men who did elect to use surgery as opposed to radiation lived longe.Read the study at;https://onlinelibrary.wiley.com/doi/10.1002/pros.24317Cancer ABCs would like to thank: Foundation MedicineMyovant Bayer  Dendreon for their continued support of our podcast program. Support the show (https://www.cancerabcs.org/new-page-2/)

https://ard.bmj.com/content/early/2021/08/22/annrheumdis-2021-220597 As per the link above, individuals taking the drug methotrexate experience an up to 62% reduced rate of an immunological response when given a mRNA Covid-19 vaccination like to Pfizer and Moderna vaccines.  This finding suggests that patients on methotrexate may need alternate vaccination strategies such as additional doses of vaccine, dose modification of methotrexate or even a temporary discontinuation of this drug.In this podcast, Joel Nowak from Cancer ABCs, who is taking methotrexate, after having is booster shot of the Moderna vaccine was informed by his doctor that he should have not received the injection without having made a modification in his methotrexate.   Joel talks about his frustration and anger that he was not informed about this complication when the research was first published, three months prior to his receiving his Covid-19 booster shot.   Joel shared his current plan to discontinue taking methotrexate and hope that the booster will still create some antigen effect.  He will follow up in a few weeks and check his antigen level (blood test) and then if he hasn't received an adequate result go on a campaign to obtain an additional Covid vaccination booster while still remaining off methotrexate.Joel's story should serve as a warning to anyone taking methotrexate that they need to discuss this issue with their doctors prior to having a mRNA Covid-19 vaccination.  Support the show (https://www.cancerabcs.org/new-page-2/)

When you are first diagnosed with cancer, when the doctor says to you have cancer, you are likely to have many different responses. Among these first possible responses are fear, apprehension, disbelief, sadness, anger, dread, or even denial. Any and all of these reactions are reasonable and normal.The question is how do you chose to deal with these feelings?  Everyone's cancer is different and how we as individuals deal with our cancer is also different. However, developing a specific mindset, taking personal responsibility for yourself and your medical care, learning about your disease and  deciding on how you are going to come to grips with your reality will immediately influence you today and tomorrow. We all have choices to make, the choice we eventually make will have repercussions from today until the day we die.  Making better choices is hard, but so much of our future is dependent on the choices and decisions we make from today and on. In this podcast, Joel Nowak shares some lessons he has learned about being diagnosed with cancer.  Joel has been told he has cancer on six different occasions.  He has been diagnosed with 5 different cancers (thyroid, renal (kidney), melanoma, prostate and appendiceal (appendix cancer) as well as a prostate cancer recurrence five years after his primary treatment. Cancer ABCs would like to thank its podcast sponsors for their support of this podcast program.  Our sponsors include:Myovant/PfizerFoundation MedicineBayer DendreonSupport the show (https://www.cancerabcs.org/new-page-2/)

Joel Nowak and Shane Norris discuss his unusual Covid Pandemic Journey with a new prostate cancer diagnosis.  Shane, a well respected music producer and gig worker, joined with other New Orleans artists to raise funds for out of work New Orleans musicians.  As he begun to create a fund raising vehicle he was diagnosed with prostate cancer.  Shane shares the experience he had navigating the Covid pandemic as he searched for the prostate cancer treatment that he felt best suited his needs.  With financial support raised from a GO-Fund-Me project as well as help  and guidance from a number of resources, including medical professionals,  family and friends,  Shane decided to become the first man in Louisiana to treat his prostate cancer with HIFU treatment.  Despite Shane having to deal with the pandemic,  learn about prostate cancer, learn about potential treatments and their possible side effects Shane and his colleagues raised and distributed $400,000 to out-of-work New Orleans artists.   Some Important Additional Information: 1-  High Intensity Focal Ultrasound (HIFU) currently has a CPT code, but is not covered by any of the commercial insurers in the United States.  2- The rate that CMS (Medicare) reimburses is current so low no medicare facility can  afford to offer HIFU.   Men with medicare or commercial insurance should assume that they will have to pay 100% of the cost of the treatment.For additional information about HIFU and to advocate for changes to HIFU reimbursement rates you can contact 877-884-HIFU (4438).3-  Shane's personal experience with side effectsfromhis HIFU treatment does not guarantee that others having HIFU  will have the same experience.  Every man has different side effects from every treatment they may  have.Support the show (https://www.cancerabcs.org/new-page-2/)

Radiopharmaceutical scans (PETS) are a vital tool in our fight against cancer. These special PET scans allow us to make earlier cancer diagnoses while a cancer is still contained in the original organ.   With an earlier diagnosis, treatments can still stop the cancer before it is able to move to other parts of the body, or become metastatic.  These special scans also are our best tools to evaluate whether our treatments are working, or if we have developed resistance to the treatments.  FDA approved treatments are limited, so we have  to take full advantage of them while they work.  Since most treatments will eventually stop working, we need to also have an immediate and accurate way to measure whether we are still benefiting from our treatments, or have developed resistance to them.Sadly, the future of these scans is in jeopardy.  The current insurance reimbursement schedule only supports the use of these scans for three years, after which reimbursement rates might not cover the costs, making these very important scans unavailable despite having been approved by the FDA.  Currently these scans could be looking  at a 3 year life, after which adequate reimbursement might disappear (as will the availability of the scan to patients). Cancer ABCs is working to change the law so that reimbursement of these scans will keep them affordable and available as we need them.  Join us and help us preserve the availability of these scans.  To learn more about this issue,  and to lend your support, reach out to us at info@CancerABCs.orgCancer ABCs is proud to have and to thank our wonderful podcast sponsors:Foundation MedicineMyovant DendreonSupport the show (https://www.cancerabcs.org/new-page-2/)

Joel T Nowak from Cancer ABCs discusses with Dr. Rana McKay, Associate Professor of Medicine at the Moores Cancer Center at the University of California in San Diego, her recently published article that analysizes real world data that demonstrates that Provenge (sipuleucel-T), an immune therapy for castrate resistant metastatic prostate cancer (CRMPC), can reduce the risk of death over and above the newer hormone treatments that have been FDA approved . Dr, McKay evaluated a large medicare data base and determined that despite the addition of the many second generation hormone treatments like Zytiga, Xtandi and Nubequa Provenge continues to lower the risk of death for men with CRMPC. She also discussed research that she has ben involved in that has been evaluating survival risks for men with prostate cancer who get the COVID-19 virus. Support the show (https://www.cancerabcs.org/new-page-2/)

One of the most common question men with prostate cancer ask us at Cancer ABCs is if they can stop their hormone therapy (ADT) when they go on a second generation hormone treatment like abiraterone (Zytiga).A recent analysis of the SPARE Trial points us in the direction that it might be possible to halt ADT when you are taking Zytiga. SPARE was a small trial which needs to be replicated by a larger trial before we can gain confidence in this conclusion. SPARE did not evaluate what, if any change. stopping ADT when you are on Zytiga might have on survival, economic costs and the quality of life. Support the show (https://www.cancerabcs.org/new-page-2/)

Men who have a local prostate cancer recurrence, or their PSA starts increasing, after having prostate cancer surgery (a radical prostatectomy), the treatment of choice is considered salvage radiotherapy (SRT). In the post prostatectomy setting, SRT may impose significant risks and complications.Potential complications or side effects can include incontinence, bladder neck contracture, bladder and bowel symptoms, needing secondary procedures, as well as secondary malignancies. Radiation should never be considered non-invasive, but it can halt the progression of the cancer. Therefore, reserving radiotherapy for those who will most benefit is of great concern.In this podcast Joel Nowak speaks with Mr. John Harrison who had salvage radiation and has experienced many of these side effects. On two occasions John has used Hyperbaric Oxygen Treatment which he describes as well as having a colostomy to allow his colon to rest and hopefully heal. In addition to having deal with radiation toxicities, he still has to be treated for his progressing prostate cancer. John has just completed a Phase II Clinical Trial as well as using Lupron, aka Hormone Therapy (ADT). To date, John has had limited relief from his symptoms, but his cancer is under control. John shares his journey and experiences treating his side effects from both the surgery and the salvage radiation. Despite all of his symptoms he maintains a positive attitude and reminds us that his experiences are his and do not reflect what others might experience.John considers himself an outlier. As an outlier he offers some sage advice for all of us who are being treated for prostate cancer. Support the show (https://www.cancerabcs.org/new-page-2/)

Genetic testing plays a major role in identifying an individual's risk for developing cancer as well as the management of many different cancers, including prostate cancer. It's important that we patients know the limits of a key federal privacy law that is supposed to protect us when we do have a genetic test.In June, 2020, there was a new set of recommendations on the use of genetic testing published by the International Philadelphia Prostate Cancer Consensus Conference that strongly endorses the testing of all men with metastatic prostate cancer to aid with treatment decisions and to assess eligibility for clinical trials. It is important that we understand that there are significant limits to the Genetic Information Nondiscrimination Act (GINA) of 2008, which was written to protect against discrimination in employment and medical insurance for people with known genetic risk factors for diseases, including cancer. Support the show (https://www.cancerabcs.org/new-page-2/)

Written Transcript at https://www.cancerabcs.org/transcript-racial-disparities-in-prostate-cancer-clinical-trialsJoel T Nowak interviews Emily Rencsok, an MD/PhD student at the Harvard T.H. Chan School of Public Health. They discuss the findings of a recent publication which she was the first author that analyzed 59 prostate cancer clinical trials based in North America and Europe.Overall, Rencsok and colleagues looked at 72 global phase 3 and 4 prevention, screening, and treatment clinical trials for patients with prostate cancer that enrolled patients between 1987 and 2016. Of the 72 trials, 59 had race data available; corresponding with a total of approximately 844,000 participants.When the researchers analyzed the diversity of enrollment over time, they found that the proportion of black men who were enrolled in prostate cancer clinical trials decreased from 11.3% in 1995 to 2.8% in 2014. Even further, the investigators found that the proportion of white participants in these clinical trials has primarily remained above 80% since 1990.Joel and Emily also discussed the Iron Man study that has been making strives to reverse this trend. They also discussed implicit racial bias in both clinical trials and treatments offered to black black individuals (Rencsok EM, Bazzi LA, McKay RR, et al. Diversity of Enrollment in Prostate Cancer Clinical Trials: Current Status and Future Directions. Cancer Epidemiology Biomarkers & Prevention. doi:10.1158/1055-9965.EPI-19-1616.)Support the show (https://www.cancerabcs.org/new-page-2/)

Joel Nowak discusses how one doctor, Dr. Emmanuel Antonarakis from The Johns Hopkins Hospital has modified his prostate cancer treatments in the era of the coronavirus. Joel shares how Dr. Antonarakis has moved to using telemedicine when possible, the changes he has made for his patients on hormone therapy (ADT), and how he is using chemotherapy differently for those men who need it as well as how he is avoiding using chemotherapy when possible.Listening to this podcast will help you better understand the possible changes you too might be able to discuss with your own doctor about your own treatment. It will help you ask better questions at your own medical appointments.Support the show (https://www.cancerabcs.org/new-page-2/)

Dr. Tim Richardson talks with Joel Nowak talk about the real survival advantages that the immunotherapy known as Provenge (sipuleucel-T) offers to men, especially men who get the therapy while their PSA is low (Schellhammer data) and men with an African-American background. Along the way, they also talk about what is immunotherapy, how it works, how Provenge is actually administered, its side effects and who should get the treatment and where in their treatment schedule would it be best to get the treatment. Support the show (https://www.cancerabcs.org/new-page-2/)

Joel Nowak discusses why men who have a radical prostatectomy, or the surgical removal of their prostate gland to treat prostate cancer often suffer urinary incontinence. Urinary incontinence negatively affects a man's quality of life so it is important that men know about their options so they can discuss them with their urologists. Surgically induced urinary incontinence can be dealt with when you have an RP to treat your prostate cancer, learn about your options as well as the risks and the rewards.Support the show (https://www.cancerabcs.org/new-page-2/)

Mr. Anson Tharayanil, a Medical Science Liaison from Genomic Health rejoins Joel Nowak from Cancer ABCs to talk about another test for men diagnosed with low or favorable medium risk prostate cancer, the Oncotype DX Genomic Prostate Score.The test should be used along side the traditional measures we use like biopsy Gleason Grade and scans to help a man decide if he is a good candidate for Active Surveillance (AS) as opposed to having surgical or a radiation intervention. Biopsies only sample 1% of a man's prostate gland, so as a stand alone measure it does not provide us with an accurate understanding of the aggressiveness of a man's prostate cancer. When added to the other measures, we traditionally still fall far short of accurately knowing which prostate cancers need immediate treatment and which can be monitored. Research shows that at least 20% of men who qualify for AS using the traditional measures if they go on and have surgery they find that their cancer is actually a lion in sheep's clothing, or is very dangerous. The Oncotype DX Genomic Prostate Score has been well validated and should automatically be used by any man who is trying to decide if they are a good candidate for Active Surveillance. Support the show (https://www.cancerabcs.org/new-page-2/)

In this podcast Anson Tharayanil, a Meical Science Liaison from Genomic Health, Inc. talks with Joel Nowak about their test, the Oncotype DX ARV-7 Nucleus Detect Test for men with castrate resistant metastatic prostate cancer. The test is used to determine if the second line hormone therapies like Xtandi, Zytiga and Erleada will be an effective treatment for men who have the diagnosis of prostate cancer that has left the gland (if they have metastases) and are no longer responding to the first line hormone (ADT) treatments like Lupron, Eligard, Prostap and Casodex. Initially, Anson gives an explanation about what is castrate resistant metastatic prostate cancer so that everyone can clearly understand the disease process that happens as prostate cancer progresses. Afterwards, he describes how the Oncotype DX ARV-7 Nucleus Detect Test works so that you can know if you are a candidate for any of the new second line hormone therapy drugs (Zytiga, Xtandi and Erleada). Anson also describes how it might be possible to re-sensitive some men who have stopped responding to thee drugs. Support the show (https://www.cancerabcs.org/new-page-2/)

Dr. Ken Pienta from The Johns Hopkins Hospital explains all about metastatic prostate cancer and how it spreads or metastasizes. He Includes in his discussion how prostate cancer is staged, how cancer migrates from the prostate gland to distant sites that can then develop into tumors. In this discussion He clarifies the difference between local invasion and metastatic disease. He also talks about the current reality of our scanning technology, including the new Axumin and PSMA scans and how large, or how many cells, need to be present in a tumor in order for it to be visualized. Dr. Pienta describes the current treatment issues surrounding oligometastatic prostate cancer (just a few tumors in the pelvic area) as well as the role of the tumor micro-environment in supporting the metastatic process. He also shared two clinical trials, the TED1 and the TED2 Trials (Total Obliteration Disease Trials) which he is conducting for newly diagnosed men with five or less metastatic lesions. Support the show (https://www.cancerabcs.org/new-page-2/)

Mark Hall was diagnosed with metastatic prostate cancer with a PSA of 4,400 and a Gleason Score of 8. Despite these terrible numbers he has been thriving the last four years with an undetectable PSA and a fantastic quality of life!Mark shares his journey, where under the guidance of Dr. Charles (Snuffy) Meyers he went through a heavy regime of hormone therapy treatments as well as the immunotherapy Provenge (sipuleucel-T). Mark has been experiencing a profound four year remission of his probate cancer. Mark attributes his remission to the Provenge treatment as well as Dr. Meyers guidance. The Cancer ABCs podcast program receives support from Genomic Health, which transforms treatment decisions in cancer by delivering clinically actionable diagnostics. Support the show (https://www.cancerabcs.org/new-page-2/)

Hearing that someone you know or a loved one has been diagnosed with cancer is often scary. Not only are you concerned about their health, but many of us are also not sure how to speak with them or offer them help. We want to reach out to them, but we don't know if we should talk about their cancer. We also don't know how we can help them. Joel T. Nowak, a five time Cancer Thriver offers some insights into how you can know how to talk to someone with cancer as wells how you can provide them with the help and support they really need. Support the show (https://www.cancerabcs.org/new-page-2/)

Joel T Nowak from Cancer ABCs along with oncology nurse Fran Fanning (co-owner of Heavenly Hash) participated in a prostate cancer patient conference sponsored by Prostate Cancer International. The conference was held in Ft. Meyers Florida in March of 2019.They offered a live presentation that described how hormone therapy worked, how it is achieved, its side effects as well as some "grassroots" methods used by men to control the side effects caused by ADT (hormone therapy). Fran's presentation included information and a discussion about the role of CBD and THC (marijuana) in cancer care.Both Fran and Joel also answered many questions that were asked by the men and their support givers who were in attendance at the conference. Although most of the questions were about ADT, they also fielded other related questions about prostate cancer treatments as well as Cancer Thrivership. Voice over introduction by Amber Bloom.Support the show (https://www.cancerabcs.org/new-page-2/)

Joel Nowak from Cancer ABCs interviews Michael Singer, a male breast cancer thriver. Michael, diagnosed at age 50, shares his journey and his advocacy as a man with breast cancer. Three years before learning that he had breast cancer his sister, with whom he lived, was diagnosed with metastatic breast cancer. She succumbed to the disease one year after receiving the diagnosis. So, when Michael learned about his diagnosis, he assumed that he too would live for only one year.Like many other men, Michael did not know that men get breast cancer, so when his doctor told him that he had breast cancer, he thought that the doctor was mistakenly looking at his sister’s chart. Michael shares that it took two visits to his doctor’s office before he told the doctor that he had a lump under his nipple. When first diagnosed, he was too embarrassed to tell his friends or family that he had breast cancer, but instead told them that he had chest cancer. Michael also shares the frustrations and unhappiness he experienced in the breast cancer oncologist and surgeon’s offices and clinics where he was segregated and treated differently from the other breast cancer patients because he was a man. He talks about how “pink; pink balloons, pink ribbons, and pink medical forms” asking him if he was breastfeeding and when was his last menstrual cycle made him feel like a freak. Because of a television show he saw Michael shared how he finally came to grips with being a man with breast cancer and how he came to understand that he isn’t a freak because he has breast cancer. He realized that he could improve his life by connecting with many different advocacy organizations including the Male Breast Cancer CoalitionMichael is now THRIVING with cancer. He has developed systems and tricks, which he shares in the podcast, to deal with having to go to a breast cancer clinic and be the only man there for a mammogram (Mike refers to them as a menograms). He also shared information about the great work that both he as an individual and the Male Breast Cancer Coalition do to support men with breast cancer and advocate for the inclusion of men in breast cancer research and clinical trials. Support the show (https://www.cancerabcs.org/new-page-2/)

Joel T Nowak interviews Dr. Maryanne Sadar, who has developed a novel drug target, an investigational treatment, that is a first in class hormone therapy operating on the N Terminal Domain of the androgen receptor. The investigational treatment, Epi-506, is being tested on men with advanced, metastatic prostate cancer. Dr. Sadar describes how the drug target was first identified then how it was tested in cell lines, then animals and now in humans. She also describes the process of having to form a new corporation, Essa, to raise the funds and the expertise to conduct the clinical trial. Epi-506 is currently in a first in humans, phase I, dose escalation trial is being conducted in both Canada and the United States. Dr. Sadar also discusses how a man with castrate resistant prostate cancer could join the trial. Dr. Sadar‘s career as a human cancer researcher began before there were many other women in cancer research. She shared some of her experiences being a female pioneer in medical and cancer research. She also shared her very personal reason in her decision-making process to become a cancer researcher. Dr. Sadar ends the podcast on a positive and very upbeat message to all Cancer Thrivers. Read a Transcript of this PodcastSupport the show (https://www.cancerabcs.org/new-page-2/)

Joel Nowak talks with Dr. Corrie Painter. who is an eight-year Cancer Thriver with Angiosarcoma, a very rare and lethal cancer of the interior of the blood vessels. Dr. Painter is a researcher with the Broad Institute of MIT and Dana Farber. She is instrumental in designing and executing the Broad’s research project, The Angiosarcoma Project as well as their Metastatic Breast and Metastatic Prostate Cancer Projects. Dr. Painter shares her heart wrenching story of being diagnosed with Angiosarcoma, how she made her treatment decisions when there was no treatment available that had demonstrated any effectiveness in treating her cancer, and how she searched out others with the disease to find that many were no longer alive. Dr. Painter, who is an outlier, has been involved in the development of the Angiosarcoma Project that is a patient driven project that is defining the genetic map underlying Angiosarcoma and its potential treatments. The project is recruiting others with Angiosarcoma to participate by going to the website at www.ASCProject.org and clicking the “Count Me In” button. Cancer Thrivers who are counted in will be asked to contribute, from their home, blood, saliva and tissue samples for genetic sequencing as well as signing releases for the project to obtain their medical records. The project will map the genetics of Angiosarcoma and learn about how it relates to drug therapy and treatment efficacy. Cancer Thrivers who are “counted in” will receive regular updates on what is learned by the project.To be counted in go to the site at www.ASCProject.org and clicking the “Count Me In” button. WARNING – Dr. Painters story is very informative, but will pull your heartstrings.Read a Transcript of this PodcastSupport the show (https://www.cancerabcs.org/new-page-2/)

Joel Nowak interviews Dr. Eli Van Allen, a medical oncologist specializing in prostate cancer, from the Broad Institute, an MIT and Dana Farber collaboration and the Dana Farber Hospital about the Metastatic Prostate Cancer Project. The project is a research project created jointly with patients that are reaching out to men with metastatic prostate cancer and asking them to allow the Broad to have access to samples of blood, saliva, tissue (if there is any) and their medical records. The project will sequence the samples provided and define the genetic map of prostate cancer and evaluate the drugs taken in relation to the genetic discovers made. The overall goal is to expand the understanding of the genetics of metastatic prostate cancer, develop new drug targets, define prostate cancer subtypes, understand drug resistance, and expand our knowledge of racial differences and prostate cancer genetics and responses. Men who participate will receive regular communication about the findings of the project. For some men, the discoveries made by the project might be actionable. You can participate from home; everything will be sent to you in a discreet package. To participate go to www.mpcProject.org and click “Count Me In.” Additional project information is available at https://mpcproject.org/more-details