We often speak about genomic testing to identify mutations! Why? – because identifying a mutation may open the possibility of using a ‘precision medicine’ that may come into play if you have difficult disease to treat …. for any type of cancer and other conditions.
Our Speaking Freely moderator, Rich Jackson, recently attended a support group meeting that received a presentation from INVITAE , a genomic testing lab that offers a comprehensive germ line or inherited genetic mutation test. Their tests may be offered at no cost depending on your disease and its demographics. For a full list of currently sponsored (free) tests, please visit https://www.invitae.com/en/sponsored-testing/ . You can also call Invitae at 800 436 3037.
Rich writes:
INVITAE is offering hereditary genetic (germ line) testing with a maximum out of pocket expense of $250.00 – and the cost could be $0.00. The genetic testing must be initiated by the patient who also names a doctor’s office that controls their Personal History Information. It is saliva based and tests for 47 specific markers including BRCA and Lynch Syndrome markers. Results are returned to the doctor to be communicated to the patient. INVITAE also provides access to genetic counseling.
Currently, prostate cancer patients qualify for free genetic testing provided they are Gleason 7 or greater at diagnoses (as may other conditions like pancreatic cancer and chronic kidney disease – see above for more information. rd).
INVITAE creates a ‘tag number’ to identify the sample that references back to the medical office, but for their purposes the information is anonymous. The company gathers large pools of patients for a given condition that they can then market to drug companies with the purpose of identifying prospects for clinical trials based on genetic markers.If a patient is a candidate, their doctor’s office will be contacted.
As explained by the regional manager w.r.t. prostate cancer:
‘A drug company would have a new drug to trial which they thought would work better with certain genetic markers. The company would contact INVITAE looking for men that matched. INVITAE would check their database, locate the identifiers of men that matched and contact the doctors office with the information. The doctor would contact you and pass on the information and how to contact INVITAE for additional information.’
Peter Kafka’s latest thoughts on men, risk and clinical trials!
I was reading the other day about the challenges of getting an adequate number of men to subscribe and participate in certain clinical trials for prostate treatment. It had to do with “risk”. In general, men are bigger risk takers than women. In my career with the National Park Service I was always dealing with the seeming dichotomy between safety and risk. Working under three successive female superintendents I was at times admonished for not putting “safety first”. But without a certain amount of risk, nothing gets accomplished.
I am not certain where I am going with this thought, but I believe that the willingness of men to take risks has been a great benefit to the advancement of medical science on many fronts. Prostate cancer detection and treatment is very different than it was even five years ago and a lot of this has to do with the willingness of men to take risks. Even the great numbers of men today who choose to follow the path of “active surveillance” rather than having their prostate surgically removed or radiated is indicative of a willingness to “risk” living with cancer.
I know for myself that I am going to be faced with some treatment decisions in the coming year. The decision tree is always a challenge to climb. Which limb is sturdy enough to hold my weight? I think that this is one of the reasons I so enjoy working and listening to others in our support community. Sharing our individual experiences on this journey is enlightening. There are not many rights and wrongs, but there are plenty of rights and lefts. And what is a right move for you might well be a left move for me.
The subject of testosterone (T) comes up frequently on AnCan’s virtual prostate cancer support groups.
Testosterone is thought to “feed” prostate cancer cells so the goal of antiandrogen therapy (ADT) is to reduce the amount of testosterone circulating in your blood, preferably to <20 ng/dL Lupron, Firmagon and similar agents do a great job of suppressing testosterone, at least for a while. Unfortunately, ADT can have unpleasant side effects (fatigue, hot flashes, muscle atrophy, loss of libido, etc.) but the severity and tolerability of these can vary from man to man.
Some men are fortunate enough to try “intermittent” ADT. The goal here is to get a break from ADT side effects and to increase testosterone levels (and libido). It takes time for ADT side effects to wear off and for testosterone levels to rise. Again this can vary from man to man and depends upon a number of factors. So the question arises: “What is ‘normal’ testosterone?
According to WebMD, a normal testosterone level depends on your gender and age.
Normal total testosterone results in adult men:
Ages 19 to 49 249 – 836 nanograms per deciliter (ng/dL)
Ages 50 and older 193 – 740 ng/dL
MSKCC recently published a timely article on testosterone recovery:
Highlights, summarized by Rick Davis, are:
Men on ADT for more than 6 months – most of us – are 4 times more likely to remain at castrate levels after 2 years
If your baseline was less than 400, you are 3 times more likely to remain at castrate level
The good news is ” at the two-year mark after ADT cessation ……. 8 percent of patients remained castrate, 76 percent returned to a normal TT level (above 300 ng/dL), and 51 percent recovered baseline TT.”
Is it possible to know too much? Of course not! That’s a rhetorical question.
Knowledge is always a good thing — almost always, anyway. We accumulate knowledge with each day of life. We learn and gather information from a variety of sources (our parents and teachers, books, educational seminars, friends and coworkers, the media and even — gasp — the Internet). But you already knew that, didn’t you?
Unfortunately, our sources of information aren’t always correct – even if well-meaning. Some information is incomplete while some is just plain wrong. More likely, though, it becomes outdated and obsolete. Technology marches on, sometimes faster than our ability to grasp it. So we must be careful.
Sometimes though, it can be overwhelming and, unfortunately, this can lead to frustration. We can even use it to make bad decisions if we’re not prudent. This is especially true of medical knowledge.
By its very nature, medical information is often complex and obtuse – especially to the Everyday Joe like you and me. Even highly educated physicians and researchers can get overwhelmed. That’s one of the reasons we see so much specialization these days. You wouldn’t go to your dentist to fix your broken leg, would you? Likewise, you wouldn’t want your cardiologist to fix your toothache. At least, I wouldn’t. Sadly, the days of Marcus Welby, M.D. are long gone.
The more complex our medical problem, the more we need a specialist. We can only hope that he or she keeps up with the latest published research. This is where our own knowledge can be priceless. We may not know or understand all the specifics but we can know enough to go in well-armed. At the very least, we’ll know what questions to ask. Online virtual support groups like those offered by AnCan are a good place to start.
So, by all means, read and listen and learn but never assume you know it all. Keep your physician on his toes.
As Sgt. Esterhaus from TV’s Hill Street Blues would say “Hey! Let’s be careful out there.”
As we all know, there is much more to mounting an offense against cancer or any other serious or chronic illness than just pharmacotherapy or radiation or surgery. An integrated approach that combines traditional medical interventions with lifestyle changes such as exercise, diet, yoga and meditation practice can play a vital role in strengthening our mind, body and spirit.
The attached document is a compilation of many online resources (graciously shared by Kevin Berrill, LCSW, at Ann’s Place in Danbury, CT) that offer mostly free access to computer and smartphone apps offering help with the practice of Mindfulness and Mindful Meditation. It includes resources for all levels of practice, some guided, some with music, some with both.
One of my favorites is called Insight Timer (https://insighttimer.com/) that has hundreds of free recordings to help you practice meditating, relaxing, gratitude, and sleep, to name a few. They can be anywhere from a few minutes long to over an hour, depending on the time you have available.
AnCan’s good buddy and Advanced Prostate Cancer Virtual Group participant, Jerry Deans – who also happens to be Vice Chair of our partner UsTOO’s Board – has been using a wonderful service, Mercy Medical Angels for some time. He recently wrote to us:
I want people to know about a service that is being offered to those who qualify financially or are veterans. It’s called Mercy Medical Angels https://mercymedical.org/
They have transported me free of charge from Richmond, Virginia to NYC on two occasions.
One trip was for a clinical trial at NY Presbyterian for a Progenics 18F]DCFPyL PSMA PET scan and the second trip was to meet with Dr Charles Drake for discussion of next steps in my treatment. One of the pilots Royce Repka recorded this video.
Jerry recently published a book on his and his wife, Patsi’s struggle with disease and much more. The book is titled Lost But Not Forgotten – read the Customer Reviews and you’ll find this tome is full of hope!
