by Rick Davis | Apr 26, 2020 | Health Resources, Advocacy, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Men 'Speaking Freely', Men's Breast Cancer, Multiple Sclerosis, Prostate Cancer, Recent News, Sarcoidosis
Peter Kafka, our Board Chair, is currently in the midst of chemo. He relates first hand why men must to get off their high horse and ask for help – it can solve many medical problems simply! (rd)
ASKING FOR HELP
Why is it so difficult for men to ask for help? Perhaps many men view it as a sign of weakness if we can’t handle a challenge on our own. I have had plenty of occasions to ask myself this question over the past number of years. In terms of changes in my body and internal mechanisms I have noticed that I can “put up” with many things for long periods of time under the belief that whatever it is that is going on will go away or I will adapt to the changes. When I think about it now, I realize that this is a pretty stupid approach. An independent nature can get one in big and unnecessary trouble.
For many months before I was diagnosed with Prostate Cancer, I was symptomatic with urinary retention. In simple terms, I could not piss. This is not a normal condition which I knew, but somehow, I talked myself into believing that it was a sign of aging and probably nothing more than an enlarged prostate. It did not help that my urologist was not very attentive and did not give much more than a passing thought and a prescription for Flowmax for my condition.
After months of pushing on my gut in order to force out small amounts of urine to take the pressure off my bladder, it was a close friend who pushed me to seek medical help. I did, and as they say; “The rest is history”. But I went through many months of needless discomfort and agony before I humbled myself enough to seek help. Was it embarrassment? Arrogance? Independence? Perhaps a bit of all of these that kept me from asking for help.
I mention this because I am still learning thIS great lesson. In my current regimen of chemotherapy, I have noticed marked changes to my vision. My first thought (self-diagnosis again) was that it must be cataracts. Perhaps the chemo was accelerating this “natural” phenomenon that comes with aging for many of us in our 70’s. But the changes in my vision were substantial and rapid enough that I thought it would be worth mentioning to my medical oncologist during a recent telephone consult. I included this item in my list of “talking points” which I put together for each and every one of my medical appointments. It is too easy to forget stuff. I have learned this the hard way.
The answer came quick. It was not the chemo; it was the Prednisone. Sure enough, when I searched out the side effects of Prednisone, the blurry and cloudy vision I experienced was one of them and even at the low dose I was taking. I inquired about why I needed this steroid, I was told that for some it helped stimulate appetite and energy levels. With my doctor’s approval I weaned myself off the prednisone and decided that I would try and continue my chemo regimen with out it.
So, I guess I am still learning the great lesson: Be your own best advocate and ask for help!
by Rick Davis | Apr 23, 2020 | Advocacy, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Complementary Medicine, Health Resources, Men 'Speaking Freely', Men's Breast Cancer, Multiple Sclerosis, Ovarian Cancer, Prostate Cancer, Recent News, Sarcoidosis, Women's Breast Cancer
Some of you may already be aware of Janssen/J&J’s annual patient advocate conference,
HealtheVoices, that is usually by invitation only based on a competitive application process. This year’s pandemic has sent the Conference
virtual, and it is open to
ALL! The conference covers the spectrum of conditions from mental to physical, and from cancer to rare diseases.
#HealtheVoicesLIVE 2020 is this Saturday, April 25 starting from 11 am – 8.30 pm Eastern. You can find the full agenda and link to join
HERE. Feel free to pop in and out during the day and tune in to presentations and events of interest to each of you.There are presentations, interviews and even small group breakouts allowing you to interact with leading national advocates for differing conditions.
Please note the links to join change for the morning and afternoon sessions:
For the best experience, join the meeting via Google Chrome
I will be presenting in the 3rd Hour; the session starts at 1.30 pm Eastern and I am due up first as part of 4 flash sessions followed by a Q&A. I will be offering tips on virtual moderation – a skill many patient advocates have had to quickly familiarize themselves with in the past few weeks. But as you all know, we’ve been at this game for many years!!
Please join me and HeV, enjoy the conference, learn a little, and above all – stay safe, well and have fun!
Onward & upwards, rd
by Rick Davis | Apr 19, 2020 | hospice and palliative, Advocacy, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Men's Breast Cancer, Multiple Sclerosis, Ovarian Cancer, Prostate Cancer, Recent News, Women's Breast Cancer
Editor’s Note: Some of our AnCan prostate cancer community have alrady seen this message, but we felt it was important enough to broad- rather than just narrowcast!
AnCan has recently noted a couple of examples where involving more rather than fewer doctors can be benifit the patient. However, doctors, advocates and others may disagree. Since AnCan believes that YOU, the patient, are your best advocate, we’ll leave it to you to decide.
The first example involves palliative care …. and NO, palliative care is NOT hospice. Listen to this 2′ video from Dr. Elizabeth Loggers at Seattle Cancer Care Alliance, one of the best cancer treatment facilities in the country …. she explains it much better than we ever could! Nonetheless, there is a reluctance by some medical oncologists to involve the palliative care service for their patients … even at a late stage. While some med oncs welcome the involvement of palliative care, others see them as meddling. We have seen examples to support this with different cancers and in different NCCN institutions, including those with the best palliative care services in the USA.
This concerns us greatly, because while the med oncs have expertise in addressing your cancer, they may not be experts in, and on top of, all the developments in pain and side effect management – like nausea, fatigue and more. And that’s why in some hospitals, Palliative Care is called ‘Symptom Management’ – for example Seattle Cancer Care and UCSF. It is not just a euphemism to dispel the association with hospice; it truly describes what the palliative specialty does. Some palliative websites boldy invite all cancer patients, no matter the stage, to consult with them! A further benefit to adding a palliative care doc to your team is the value of having a readily available quick and dirty second opinion on treatments your med onc prescribes. Perhaps this is the source of concern for your medical oncologist, but frankly they need to get over it and work collaboratively with your paliiative care doctor.
Those who follow AnCan well know AnCan pushes involving a palliative physician early in the treatment path for a multiple of reasons. And we proudly boast having one of the best palliative care doctors in America on our Advisory Board, Dr. B.J. Miller. For most NCCN/NCI institutions you do not need a referral – just make your own appointment. First try your quarterback doctor, but if they seem reluctant then advocate for yourself, force the issue and go direct.
The second example this week may apply more to prostate cancer than other oncological disorders, although maybe not! In most cases the diagnosis of cancer immediately involves a medical oncologist. For a few cancers, like prostate, a GU med onc (genitourinary medical oncologist for those unfamiliar with the vernacular!) may not get involved until the disease has clearly metastasized; we see that as a mistake that does not serve the patient’s best interest. AnCan believes a GU med onc, and in fact any specialty med onc, should be included as soon as the treatment plan includes a systemic protocol. And why – because surgeons and radiation oncologistst are not trained in internal medicine and systemic treatment – that is to say any treatment that impacts the whole body like chemo- or hormone therapy. That requires expert knowledge of internal medicine. Whle some may argue that med oncs only muddy the waters early in treatment, we disagree.
by Rick Davis | Apr 17, 2020 | Recent News, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Men's Breast Cancer, Ovarian Cancer, Prostate Cancer, Webinars, Women's Breast Cancer
Leading Experts Discuss Important Cancer Topics
Make sure you’ve signed up for our upcoming
Connect Education Workshops! These free workshops provide the latest cancer information straight from leading experts, via phone or online. At the end of the workshop, you’ll have a chance to ask the experts your own questions.
by Rick Davis | Apr 10, 2020 | Advocacy, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Men's Breast Cancer, Ovarian Cancer, Prostate Cancer, Recent News, Women's Breast Cancer
Like other cancer advocates, we have heard many questions over the last month or so about the urgency of treatment in these surreal times of self-quarantine. This is especially relevant if the treatment is for someone whose immunology is already compromised – by chemotherapy, other systemic treatment, or possibly even radiaiton that can stress the white blood cells in some instances.
AnCan’s position, by and large, is don’t take unnecessary risks! Many treatments can be safely postponed …. and if considered elective, may be deferred automatically; for example, biopsies, especailly in a monitoring rather than a discovery function, and other elective surgeries. This is also true for many scanning procedures. Some drugs have long half lives, so if, for example you are receivng hormone thereapy or bone strengtheners and have been on them for a while, speak to your medical team whether you can skip a planned maintenance appointment.
And if in the midst of chemotherapy or immunotherapy, huddle with your medical team. Anecdotally, one of our board members, who is 2 treatments into a 6 treatment cycle, was advised by his medical oncologist to defer his infusion today .. so be sure to ask befere showing up for a scheduled appointment. You well know, especially if a blood cancer patient, that your immune system is already compromised so don’t place it under threat if you can avoid that.
ASCO is continuously updating guidelines for all types of cancer treatment here.
What about those of you about to start, or may even be in the course of radiation therapy … what to do? Our Advisory Board member, Allen Edel, recently reviewed guidelines from ASTRO for prostate cancer radiation that he wrote about on his own blog, Prostate Cancer News Reviews and Views. The bottom line for most every situation except palliative radiation for advanced disease, is that treatment should be deferred. And if you are in the midst of treatment, you probably already know that a short deferment is fine, but a longer break can impact the effectiveness of the total cycle. Whatever your cancer, be sure to consult with your radiation oncologist to discuss whether your radiation tretment can be delayed beyond the crisis … why take the risk if you can safely avoid it.
by Rick Davis | Mar 29, 2020 | Health Resources, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Multiple Sclerosis, Ovarian Cancer, Prostate Cancer, Recent News
https://www.inquirer.com/health/expert-opinions/amid-coronavirus-stay-at-home-order-healthy-people-are-learning-ways-sick-opinion-20200326.html
Our good friend John Novack is responsible for Patient Engagement and Communications at Inspire ….. there are a few ‘Head’, and Senior VP’s sprinkled in their too! John often sources great articles and writers for major publications , one of which is The Philadelphia Inquirer, He has directed our moderator, Renata Louwers, their way.
This latest Opinion piece that appeared last Thursday struck a big chord with me … and I hope it will with you too, especially if you have lived with serious illness that has compromised your immune sytem and limited your movement.
Onward & upwards, rd
