by Rick Davis | Mar 6, 2020 | Blood Cancers, Brain Tumors, Cancer Resources, Complementary Medicine, Exercise, Men's Breast Cancer, Prostate Cancer, Women's Breast Cancer
I am copying a post recently received from New PCI publcizing a short ASCO survey on how you embrace exercise and diet. As many know, AnCan strongly endorses exercise as part of any cancer management program; and sensible diet may also be significant and rarely hurts. I have taken the survey and encourage anyone previously diagnosed with any type of cancer to do so. (rd)
The American Society of Clinical Oncology (ASCO) has put together a brief research survey to learn more about patients’ experiences with cancer care. Specifically, ASCO is interested in patient’s perspectives on how things like diet, exercise, and weight management are incorporated into cancer care.
The survey should take most people no more than 10 minutes maximum to complete. All questions are optional, and ASCO has stated clearly that no personally identifiable information will be collected.
If you are an individual with a personal history of prostate cancer (or cancer of any other type), please click here to take this patient survey. Thanks for your help to ASCO in seeking to improve cancer care.
If you know others who are > 18 years of age and who have been diagnosed with any form of cancer, ASCO would also appreciate it if you passed information about this survey on to those people too. ASCO is seeking the widest possible range of responses to this survey from the cancer patient community.
by Rick Davis | Mar 5, 2020 | Advocacy, Blood Cancers, Brain Tumors, Cancer Resources, Men's Breast Cancer, Multiple Sclerosis, Prostate Cancer, Recent News, Sarcoidosis, Women's Breast Cancer
Our Board Member and Moderator, Ken Anderson resides in Phoenix and is living with metastatic prostate cancer. He recently uncovered this article on a longstanding controversy over why many trials are not well reported. (rd)
https://www.sciencemag.org/news/2020/01/fda-and-nih-let-clinical-trial-sponsors-keep-results-secret-and-break-law
Seems the topic of clinical research and the data identified when the trials conclude has been around for years but one that I have just recently been forced into exploring in depth. At this point in my prostate cancer journey, certain second line hormone threapy drugs, that I would have hoped extend my life for years, have failed after just a couple months. This seems to be true for others and at the moment no one seems to know why. Is it from starting up front with aggressive treatments like chemotherapy? That may have forced my cancer to change just enough so something within the cancer cell activated and my cancer no longer has the required structure to allow these newer drugs to help extend life.
At this time I am fully aware that managing disease progression and cancer burden is the goal. As we move through these drugs and exhaust the Standard of Care outlined by our medical oncologists, our next option is to look for clinical trials. The data from these trials, both good and bad, has value. I can only hope that even when the data is not published, it is at minimum shared among our finest medical institutions and doctors.
An article published in Science this past month helps outline some of the Centers of Excellence that are doing a fine job with making the data available and others that are not doing so well. Find the article here.
We can only hope that the FDA and the NIH will start to use the power they do have to force more active reporting. The data from these trials, no matter the outcome, should be published in a timely manner.
by Rick Davis | Feb 28, 2020 | Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Health Resources, Men's Breast Cancer, Prostate Cancer, Recent News, Women's Breast Cancer
This past Tuesday, we discussed the impact of the corona virus on those living with cancer and suggested some risk mitigants – you can listen here.
The following day, CURE posted their own article that we are linking –
….. but remember, you heard it here first!!!
O&U, rd
PS AnCan is not so sure about cancer drugs manufactured overseas – regulation is VERY lax. Plesae see our earlier post by Len Sierra .
by Rick Davis | Feb 23, 2020 | Advocacy, Cancer Caregivers, Cancer Resources, Health Resources, Prostate Cancer, Recent News
Read Peter Kafka’s recent thoughts on getting your medical team to work in unison. This is not a hypothetical either – Peter has a quarterback doc in S. California, lives on Maui, and wants to do chemo locally. (rd)
A Tale of Two Doctors
I know that some of you, like myself, rely on the expertise of a doctor at a Center of Excellence or a larger medical facility that might be a good distance away from home and then choose to get treatment for your disease locally. This brings up the situation of two doctors communicating and working together on your treatment plan. This is the circumstance I find myself facing at the moment.
For the past six years I have relied upon a trusted genitourinary medical oncologist, Dr. Jeffrey Turner at Prostate Oncology Specialists, to guide and manage my treatment course on this aggressive prostate cancer journey I am on. Now that I have progressed to the point that a regimen of chemotherapy is called for, I have chosen to carry out this treatment at my local cancer center here on Maui. So, I have been interviewing the few Maui-based medical oncologists to determine who could work under the direction of Dr. Turner.
One of the doctors I met with the other day was a young man who appeared to be quite knowledgeable, not long out of medical school and therefore perhaps lacking in practical experience. This doctor let me know right out of the gate that he did not agree with Dr. Turner’s treatment plan. He thought it was far too aggressive and that he would not advise it. He had statistics and studies to back up his argument. I think that he had my “best interests” at heart, letting me know that the side effects of chemotherapy can be quite harsh that is why he utilizes this protocol further along in the journey.
I listened to his argument, and understood where he was coming from, but I realized that he, like many doctors was more interested in treating the disease and not the person. Good medical schools can probably be quite proficient in teaching doctors how to select the right treatment modality off the shelf for any particular disease. But behind the disease is a person – me – who might present some unique aspects of the disease that require thinking outside the box and perhaps a more aggressive approach to treatment than the “standard of care”.
Convention says that the English alphabetical order begins with A and ends with Z. But if we are treating the person rather than just the disease it might be called for to end the alphabet with WZYX. We haven’t left out anything, just changed the order a bit. I think for those of us who might be facing (prostate) cancer with perhaps some unusual factors, it behooves us to find expert physicians who will manage the treatment of US and not just the disease. And then if necessary, find a local doctor who will coach on the field. And yes, I did find my man!
Editor’s Note – this is not a new problem to us. Just recently another of our participants asked his local oncologist to speak with his QB doctor at a renowned Center of Excellence in another state. The call took place in the patient’s presence, they waltzed around each other and appeared to arrive at the same conclusions, when in fact they did not agree at all. The call was not conducted on a speakerphone.
The lesson here is to make sure you are party to 3-way conversations. Doctors may accord each other professional courtesy before considering the patient’s interest. At least be sure what each one is suggesting before they speak so you can challenge an unexpected final recommendation.
Remember, YOU are your best advocate!
by Rick Davis | Feb 9, 2020 | Cancer Resources, Blood Cancers, Brain Tumors, Prostate Cancer
This week, Peter Kafka, our Board Chair and Lead-Moderator for the Low/Intermediate Risk Prostate Cancer Virtual group highlights an issue that crosses the minds of many living with cancer:
How can I have cancer? I don’t feel sick!
One of the odd things about a diagnosis of prostate cancer as well as other cancers is that it is often asymptomatic. Prostate cancer is often detected though a routine blood test or digital rectal exam. This is especially true for men who get regular physical exams. Perhaps there might be some changes in our urinary function as we age, such as increased frequency and a lessening of the stream. But generally, many men, in our sixties and seventies often proclaim that; “I am quite healthy, active and fairly fit. How can I possibly have cancer?”
Fortunately, most men with a diagnosis of prostate cancer have very low-grade disease that might never need treatment beyond routine active surveillance by a doctor. The only “downside” being that the man, and his doctor and family must be comfortable living with a diagnosis of CANCER and understand that the rate of growth is so low that it might never need further treatment. Such men will never experience symptoms of prostate cancer beyond perhaps changes to their urinary stream or frequency which is common for most men as we age.
Even men like myself, with advanced prostate cancer can go through cycles where one feels quite healthy and vigorous yet tests can indicate that the cancer is spreading and growing within our bodies. With the advent of advanced high-tech scans such as the PSMA scans, genetic testing, multi parametric MRI’s and other methods of early detection, indications of some level of prostate cancer progression can be observed at increasingly earlier stages when there are no outward symptoms or signs of distress.
The down side of these advances in early detection is that our minds can get into denial mode because we “feel just fine”. In fact, it is very often the case that it is the side effects of treatment regimens such as ADT drugs, or the after effects of surgery or radiation that make us feel sick rather than the cancer itself. Prostate cancer can be quite sly in this way and trick us into thinking that we are much better off without any treatment. This is the dilemma of our modern age. It used to be that men were diagnosed with prostate cancer only when it had already progressed to the point of distressing symptoms which could not be ignored. We now live in a very different paradigm. Lucky us!
