Michele was profiled by our friends at Patient Power for all the incredible work she has done, and is doing for the entire blood cancer community. We love her work on raising awareness for clinical trials.
One of the most important things to Michele was helping people understand how clinical trials work, like the phase II trial she participated in, emphasizing that patients “are getting tomorrow’s treatment today,” she said. Clinical trials are at the forefront of treatment options these days, offering state-of-the-art treatments. In cancer care, it is not placebo versus real treatment. Michele’s trial was a drug combination trial of two different treatment protocols simultaneously
Learn why Wonder Woman inspires her, advocating from the treatment chair, and so much more by clicking here to read the full article.
Jackie Zimmerman, AnCan’s resident graphics guru/web designer and a Member of our Advisory Board, is a long time patient advocate for multiple conditions. She’s seen seen a lot in her 15 years ….. that just bests me by a year or so!
Now Jackie has written a very perceptive and insightful Blog Post on her website that is definitely worth a read if you consider yourself a Patient Advocate … and frankly even if you don’t!
I saw a Twitter thread recently from a friend and fellow advocate who was wondering what his future in patient advocacy looked like. I’ve seen these types of threads a lot over the years and I understand…I’ve been there. Maybe it’s the new set of Lion King socks I recently purchased, but I’ve been sharing this idea of the patient advocate circle of life a lot lately and now it’s time to share it with all of my advocate friends. Whether you’re new to advocacy, or you’ve been around the block a few times, take a peep. Let me know what you think.
Did you know? It’s Multiple Sclerosis Awareness Month! We love our Team MS here at AnCan, and we love the MS community. I have such a soft spot for Dan and Jen Digmann. I’ve learned moderating tips that I use in my groups, and had the utmost pleasure of working with them to produce The TALK – MS. We loved this piece (Embracing Inclusion in Multiple Sclerosis Research) from Jen from their blog A Couple Takes on MS so much that we just had to share. We are in 100% favor of supporting inclusion everywhere in health, and love how Jen explains the importance. Thank you so much, Dan and Jen!
No one likes to be left out. Feeling excluded is the worst. It leaves you feeling such doubt. Wondering why was I ignored or overlooked? More often than not, it’s not you, it’s them. Seriously! They’re the problem, not you.
Speaking of problems, I will do pretty much whatever it takes to figure out my life’s biggest problem: Multiple Sclerosis. I imagine most other people living with this chronic disease of the central nervous system feel the same way. MS is a horrible disease, and I want to fundraise, educate people and be included as part of the reason this mystery is one day solved and we find a way to stop MS.
Thankfully, we are getting closer. Over the past two decades, researchers have made significant progress in understanding MS and even have developed numerous new treatments to slow its progression.
But, remember my earlier comment about how bad it feels to be left out? Imagine being a person of color and learning that you weren’t represented in the clinical research that led to the treatment’s approval.
That’s how it can feel for minorities who historically have been underrepresented in MS research.
MS affects everyone who is living with it differently (just look at Dan and me). The age of onset, how fast the disease progresses, and the severity of symptoms vary widely from person to person.
This is why it is so important that Genentech initiated the first-ever clinical trial that focuses exclusively on broadening our current understanding of MS disease biology among people who identify as Black or of African descent and Hispanic/Latinos living with MS. The Phase IV CHIMES study, or CHaracterization of ocrelizumab In Minorities with multiplE Sclerosis, currently is enrolling participants across the United States.
Genentech reports that minority communities living with MS, including people who identify as Black or of African descent and Hispanic/Latinos, experience more severe symptoms and a faster progression of the disease than their Caucasian counterparts. People who identify as Black or of African descent also have twice the risk of MS compared to Caucasians, while people who identify as Hispanic/Latinos have half the risk.
Such underrepresentation leads to limited data on the progression of MS, the effectiveness of treatment, and its genetic underpinnings. It also excludes people living with this condition from an opportunity to receive treatments that have the potential to make a difference.
Dan and I were thrilled to see that this effort includes the perspective of two powerful voices in the MS community: Dr. Mitzi Joi Williams, a neurologist at Joi Life Wellness MS Center, and our friend Damian Washington, an MS patient leader and vlogger we recently chatted with for our 7 Questions with A Couple feature.
Hear what they have to say about this important work:
For information on our peer-led video chat MULTIPLE SCLEROSIS VIRTUAL SUPPORT GROUP, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
Hi-Risk/Rec/Adv PCa Virtual Support Men & Caregivers Jan18
Editor’s Pick: Do you want to die of prostate cancer? – a rarely discussed topic, and understandably so! Also good discussions on blood pressure, DEXA scans, and why you don’t stay with a urologist! (rd)
Topics Discussed:
End of your treatment road … or just your doc’s road?; adding a 2nd HT treatment; when to return to treatment on intermittent HT; a prostate cancer death; spot radiation vs systemic treatment for BRCA disease progression; lupus update; femur metastasis; UCLA will reimburse when Medicare approves PSMA scan; stable PSA post chemo; testosterone not dropping below 40; 12 mo vs longer on initial LHRH; bone health, exercise & DEXA scans are important; starting abiraterone; blood pressure issues; trial fails …. prospective new trials ARV110 & AMG 160; feeling good on HT; alternatives to LHRH
Chat Log
AnCan – rick 6:11 PM: Re. Ernst – he is still with a uro!
AnCan – rick: 6:13 PM: In that case he doesn’t need a GU med onc!
AnCan – rick (to Everyone): 6:17 PM: GU = genitourinary medical oncologist
John Ivory: 6:37 PM: His doc doesn’t specialize in PCa https://ocbloodandcancercare.com/physicians/rao.html
AnCan – rick (to Everyone): 6:40 PM: Rana McKay UCSD, Tanya Dorf …. City of Hope, David Agus ….. USC
AnCan – rick: 7:12 PM: We have been telling Carl this!! Allen has to tell him
Ken A: 7:19 PM: good job Herb
John Ivory (to Everyone): 7:25 PM: FANTASTIC to hear you’re getting treatment, Rusty!
Rusty (to Everyone): 7:27 PM: I learned my lesson with putting PC/PSA.
Carl Forman : 7:29 PM: Saraiya did discuss considering chemo or radium as a back-up plan. I understand the need to follow-up with systemic therapy.
AnCan – rick (to Organizer(s) Only): 7:42 PM: Herb – tell folks what a dexa is and why they should get one.
John Ivory: 7:49 PM: Rick, in raising your bone density, do you think it was primarily from rowing, or do you also do a lot of resistance training
Jake Hannam (to Everyone): 7:50 PM: What is a Bone Density Scan (DEXA,DXA)? Bone density scanning, also called dual-energy x-ray absorptiometry (DXA) or bone densitometry, is an enhanced form of x-ray technology that is used to measure bone loss. DXA is today’s established standard for measuring bone mineral density (BMD). An x-ray (radiograph) is a noninvasive medical test that helps physicians diagnose and treat medical conditions. Imaging with x-rays involves exposing a part of the body to a small dose of ionizing radiation to produce pictures of the inside of the body. X-rays are the oldest and most frequently used form of medical imaging. DXA is most often performed on the lower spine and hips. In children and some adults, the whole body is sometimes scanned. Peripheral devices that use x-ray or ultrasound are sometimes used to screen for low bone mass, mostly at the forearm. In some communities, a CT scan with special software can also be used to diagnose or monitor low bone mass (QCT). This is accurate but less commonly used than DXA
AnCan – rick: 7:51 PM: Rowing was certainly a factor. Plus I did resistance 3x week especially to stress my spine
John Ivory: 7:51 PM: Thanks, Rick
Pat Martin (to Everyone): 8:04 PM: Would an Axumin scan be of benefit at this point. PSA about 1.0
AnCan – rick (to Everyone): 8:05 PM: I would say ….. yes, Pat.
Len Sierra (to Everyone): 8:05 PM: Pat, that’s borderline detectable for Axumin.
Rusty (to Everyone): 8:06 PM: I gotta run. Good night all.
Pat Martin (Private): 8:08 PM: I’ll contact Dr. Schweitzer and press him for additional tests.
Peter Monaco (to Organizer(s) Only): 8:13 PM: Have to go gents. Will upload recording first thing tomorrow.
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Jan 12, 2021
Editor’s ChoiceBiTE discussion …… and hear from a man with metastatic disease that is now in remission with no hormne therapy required. (rd)
Topics Discussed
Advanced disease & ‘bispecific’ alternatives; lupus hits one of our men post ADT; handling depression; starting chemotherapy with lung nodules; viability of spot RT vs systemic Tx; dealing with long-term and intermittent ADT mentally; MX disease stabilizes with no further HT; managing your own GU med onc
AnCan Barniskis Room (to Everyone): 4:20 PM: Apologies for being late everyone
Bryce Olson (to Everyone): 4:23 PM: what is the pros/cons of BITE vs. Lu177. Why BITE over that. BITE just feels less direct, and you’ve got to get the CD3 cells into the tumor and tumor microenvironment could stop that from happening in BITE without some TKI that focuses on myeloid cells
Bryce Olson (to Everyone): 4:23 PM: I wanted to ask directly but my mic isn’t working
Herb Geller (to Everyone): 4:31 PM: The radiodirective therapies are more advanced with more data to support them. All the BiTEs are Phase 1, and have many more side effects. You are coorect that BiTEs are less direct, as they depend upon activating T cells and all the current ones are dealing with issues of T cell depletion.
John Ivory (to Everyone): 4:39 PM: Right, Peter. It’s unfortunate that seeing a psychiatrist is seen as controversial. I’ve been to a number of them.
Bryce Olson (to Everyone): 4:47 PM: Really sorry Rusty. I’ve been there before and I know how shitty the depression can be.
Rusty (to Everyone): 4:57 PM: I hurt and tired. I need to go bed.
AnCan Barniskis Room (to Rusty): 4:58 PM: From David Muslin to Rusty- feel better
Herb Geller (to Everyone): 5:42 PM: He seems fine, but the real issue is the approach he takes — why 10 sessions? Is this SBRT? But I think you may need more systemic approaches.
AnCan Barniskis Room (to Organizer(s) Only): 5:46 PM: Is he still on ADT?
George Southiere MD (to Everyone): 6:02 PM: Thanks to everyone for being here !
Pat Martin (to Everyone): 6:03 PM: Dxed with Gl 10 all 12 cores + with up to 80% cancer. In 2014. Pat Martin (to Everyone): 6:06 PM: Rp, ADT for 18 mos, Vacay, Rad with ADT, Lupron Zytiga for another 21/2 years, Vacay, PSA has come back from less than 0.03 to 0.59 in 6 months. last 3 months show a PSADT of 2.1 mo. Washington state. Am at Fred Hutchinson
