by Rick Davis | Sep 28, 2021 | Advocacy, Brain Tumors, Cancer Caregivers, Cancer Resources, Exercise, Health Resources, mCRPC, Men's Breast Cancer, Multiple Sclerosis, nmCRPC, Ovarian Cancer, Prostate Cancer, Recent News
Check out the CDMRP ….. it may be for you!
Through its CDMRP — Congressionally Directed Medical Research Programs — one of the largest US funders of medical research is the Department of Defense. It will take another blog post to learn how this came about (volunteers??), but they have multiple programs for many conditions including multiple cancers … you can check the complete list at https://cdmrp.army.mil/researchprograms. Attend any gathering of patient advocates, and you are likely to find ‘Consumer Reviewers’ for one budget or another.
AnCan has several reviewers, and not just for prostate cancer. One of our PCa group regulars just finished his maiden stint reviewing grant requests for the 2022 $100 million PCa allocation, making the CDMRP the country’s second largest funder of prostate cancer research. Ben Nathanson’s qualifications …. well, he has prostate cancer, participates in AnCan groups, and likes reading scientific papers. No PhD or MD required.
Len Sierra is a seasoned Consumer Reviewer and recommended Ben as a Consumer Reviewer. Consumer reviewers sit on a panel alongside scientists and clinicians, and have an equal vote in who gets funding. They’re asked to read certain proposal pages, not the entire thing. But if you’re the right sort of person for this job, you’ll want to try reading it all.
PCRP is always looking for reviewers. To learn more, contact Melissa Flathmann, Melissa.Flathmann@gdit.com. The Prostate Cancer Research Program’s web page is https://cdmrp.army.mil/pcrp . In Ben’s own words, here’s a little more about his experience:
I just helped review grant proposals for the second-largest source of prostate cancer research funding in the United States. They ignored the fact that I’m not a doctor and haven’t studied biology since high school. They wanted me for my body.
No request gets a dime until it’s been voted on by a consumer reviewer. “Consumer” in this case means you have prostate cancer or have had prostate cancer or are a caregiver for someone with prostate cancer. It’s not enough just to want prostate cancer.
My agency wasn’t NIH (the top funder); it was the Department of Defense, which quietly oversees funding for a number of civilian health programs. More than $100 million is budgeted for prostate cancer research in the coming fiscal year.
The Peace Corps liked to bill itself as “the toughest job you’ll ever love.” Although this is a different arm of government, I too was assigned to be a cultural ambassador to a developing region where they speak a foreign language. Every fellow reviewer was a scientist, a clinician, or a statistician. For every proposal, each of us, in our own language, drafts a critique, gets a turn to speak, and gets an equal vote.
As with the Peace Corps, ditto on the tough, ditto on the love. A consumer reviewer need only read selected pages of the proposal, including an Easy Reader page (“Lay abstract”) prepared just for you. But — personal view — you take this job to stand with the scientists at the edge of research, and if you don’t take the effort to read it all, all you’re seeing is the sales pitch. The process — it’s about six weeks — leaves you breathless. You’ve geeked with the geekiest.
They’re always looking for bodies like yours. Beyond disease qualifications, somebody from a patient-advocacy organization — such as AnCan — needs to write a letter of nomination. I was wildly fortunate that Len Sierra has been doing DoD reviews for years; I sent him my resume so he’d know I really am as geeky as I look, and he wrote me a lovely letter. Len, you got me a ticket to the edge of cancer discovery, and I can’t thank you enough.
by Alexa Jett | Aug 18, 2021 | Advocacy, Blood Cancers, Cancer Caregivers, Cancer Resources, Health Resources, Multiple Sclerosis, Ovarian Cancer, Prostate Cancer, RMC, Sarcoidosis, Thyroid Cancer
We are so grateful to have Jerry Deans on our Advisory board here at AnCan. His book Lost But Not Forgotten: How Wilderness Experiences Can Transform Your Life, is just of the few days he and his wife Patsi turn pain into purpose.
Jerry was recently on the REimagine podcast, which you can listen to by clicking here.
Then, Patsi joined Jerry on another of REimagine episodes, which you can listen to by clicking here.
You’ll hear about faith, grief, and how families go through trials and tribulations.
We highly recommend listening to both, and know you will find them inspiring and uplifting!
by Alexa Jett | Jun 9, 2021 | Advocacy, AYA, Brain Tumors, Cancer Caregivers, Cancer Resources, Health Resources, RMC, Thyroid Cancer
Are you an AYA (Adolescent/Young Adult) cancer patient, survivor, or caregiver ages 15-39?
I have a great event to tell you about. Digital Cancer Con presented by Stupid Cancer is the place to be this weekend!
COMPLETELY FREE, you’ll find fun activities (trivia, dance party, scavenger hunts, prizes), meet new friends, and hear from top experts about topics relevant to you. Fertility, dating, mental health, and so much more.
You’ll also see AnCan’s own Wendy Garvin Mayo at the Practical Resources for Caregivers session on Sunday, and Alexa Jett (me) will be out and about representing any and everything AnCan. Don’t forget to say hi!
Register for this amazing event, here.
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
by Alexa Jett | May 6, 2021 | Advocacy, AYA, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Health Resources, Maui, Men 'Speaking Freely', Men's Breast Cancer, Multiple Sclerosis, Ovarian Cancer, Prostate Cancer, RMC, Sarcoidosis, Thyroid Cancer, Women's Breast Cancer
Have you checked out our page “All the Faces of AnCan” lately? We are always growing, and you might see some new faces! While we’ve discussed Dr. Herbert Geller (researcher and AnCan Advisory Board Member) previously on the blog, we have a special treat today. Dr. Geller was part of an esteemed panel explaining the science behind mRNA Covid-19 vaccines with CureTalks.
I find this description of what mRNA means and brief explanation from CureTalks to be extremely helpful.
Messenger RNA vaccines, also called mRNA vaccines, are some of the first COVID-19 vaccines authorized for use in the United States. mRNA vaccines are a new type of vaccine to protect against infectious diseases. They teach the cells of our body to make a protein that triggers an immune response. This immune response leads to the production of antibodies which protects us from getting infected if the real virus enters our body.
Be sure to check out this informative presentation, here!
To SIGN UP for any of our AnCan Virtual Support groups, visit our Contact Us page.
by Alexa Jett | May 4, 2021 | Blood Cancers, Cancer Caregivers, Cancer Resources, Health Resources, Webinars
At AnCan, we LOVE friends! And helping you get resources you need to empower you to “Be Your Own Best Advocate!” Here are some great, informative, and FREE resources from our partner CancerCare. Be sure and check them out!
Progress in the Treatment of Myelodysplastic Syndromes (MDS)
Monday, May 3, 2021 from 1:30 to 2:30 pm Eastern Time
Update on the Treatment of Bladder Cancer
Part I of Living with Bladder Cancer
Wednesday, May 5, 2021 from 1:30 to 2:30 pm Eastern Time
Progress in the Treatment of Multiple Myeloma
Thursday, May 6, 2021 from 1:30 to 2:30 pm Eastern Time
Update on CAR T Cell Therapy
Monday, May 10, 2021 from 1:30 to 2:30 pm Eastern Time
Update on Diffuse Large B-Cell Lymphoma (DLBCL)
Wednesday, May 12, 2021 from 1:30 to 2:30 pm Eastern Time
Life with Graft vs. Host Disease (GVHD) Post Allogeneic Stem Cell or Bone Marrow Transplantation: New Treatment Approaches
Thursday, May 13, 2021 from 1:30 to 2:30 pm Eastern Time
What’s New Diagnostic Technologies for People Living with Solid Cancer
Part I of The Role of Diagnostic Technologies in Transforming the Treatment of People Living with Cancer
Monday, May 17, 2021 from 1:30 to 2:30 pm Eastern Time
Understanding the Role of Immunotherapy in Treating Cancer
Part I of New Trends in Immunotherapy
Wednesday, May 19, 2021 from 1:30 to 2:30 pm Eastern Time
Progress in the Treatment of Non-Hodgkin Lymphoma (NHL)
Thursday, May 20, 2021 from 1:30 to 2:30 pm Eastern Time
What’s New Diagnostic Technologies for People Living with Blood Cancer
Part II of The Role of Diagnostic Technologies in Transforming the Treatment of People Living with Cancer
Monday, May 24, 2021 from 1:30 to 2:30 pm Eastern Time
Managing the Side Effects of Immunotherapy
Part II of New Trends in Immunotherapy
Wednesday, May 26, 2021 from 1:30 to 2:30 pm Eastern Time
For Caregivers: Practical Tips to Cope with Your Loved One’s Bladder Cancer
Part II of Living with Bladder Cancer
Wednesday, June 2, 2021 from 1:30 to 2:30 pm Eastern Time
Coping with the Stresses of Caregiving When Your Loved One Has Chronic Lymphocytic Leukemia (CLL)
Thursday, June 3, 2021 from 1:30 to 2:30 pm Eastern Time
Caring for Your Loved One with Cancer
Tuesday, June 8, 2021 from 1:30 to 2:30 pm Eastern Time
Update on the Treatment of Acute Myelogenous Leukemia (AML)
Friday, June 11, 2021 from 1:30 to 2:30 pm Eastern Time
New Perspectives in the Treatment of Advanced Skin Cancer: Advanced Basal Cell and Squamous Cell Cancers
Part I of Living with Advanced Skin Cancer and Melanoma
Monday, June 14, 2021 from 1:30 to 2:30 pm Eastern Time
Advances in the Treatment of Lung Cancer
Part I of Living with Lung Cancer
Tuesday, June 15, 2021 from 1:30 to 2:30 pm Eastern Time
Update on Marginal Zone Lymphoma (MZL)
Wednesday, June 23, 2021 from 1:30 to 2:30 pm Eastern Time
Emerging Treatments for Metastatic Melanoma
Part II of Living with Advanced Skin Cancer and Melanoma
Friday, June 25, 2021 from 1:30 to 2:30 pm Eastern Time
by Rick Davis | Apr 25, 2021 | AYA, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Health Resources, mCRPC, Men 'Speaking Freely', Men's Breast Cancer, Ovarian Cancer, Prostate Cancer, Recent News, Thyroid Cancer, Women's Breast Cancer
If Medicine Doesn’t Come to you, Go to the Medicine!
You know what they say about Mohammed and the Mountain …… if the mountain will not go to Mohammed, Mohammed must go to the mountain! Well it’s often like that today with cutting edge medicine – and even not so cutting edge if you live in out of the way places like Maui, HI where our Board President, Peter Kafka, resides. It’s all part of Being Your Own Best Advocate…… (rd) PS Peter has asked me to clarify, he wrote what follows – not me. But I guess most of you can figure that out!
Back in 2014 when I was first diagnosed with advanced prostate cancer, my younger son who was 38 years old at the time was in the urologist’s office with me getting the news. As I was seated on the exam table, he was standing in the corner leafing through the booklets and pamphlets about prostate cancer while we waited for the doctor to deliver the bad news. My son, holding up a booklet exclaimed to me; “Dad, this literature is older than me!” Right away we both knew we were in the WRONG place.
Unfortunately, so many men and women reside or walk into the “wrong” place when it comes to getting access to the most up to date technology in terms of treatment or diagnostic tools. Little did I know back then. I lived at that time under the illusion that the “Doctor” knew everything and would of course be up to date with the latest and greatest. Not so, as I quickly learned.
One of the great values that I have found in participating regularly in our AnCan prostate cancer support groups is the experiential reporting on all the new cutting-edge treatments and diagnostic tools that are emerging and available. Recently one of our number took advantage of the new technology of Micro Ultrasound to guide a biopsy. Apparently, this is found to be even better than the 3T multi-parametric MRI in determining just where to poke the needle and take a tissue sample, leading to a far more accurate diagnosis. It can detect small, but significant lesions within the prostate that might otherwise be missed.
The rub however, like any new advancement is that not every facility or doctor will be in the “know” or have access to such tools or treatments. Don’t I know this well, living here on the Island of Maui in the middle of the Pacific Ocean. The lesson for all of us is that we should carry a business card stating; “Have Suspicion Will Travel”. Please don’t wait for technology to come to your doorstep or for enlightenment to come to your doctor. Your life is way too important to me.
