Sarcoma survivor and Rein in Sarcoma volunteer, Miranda Mead, has served for the past three years as a Peer Reviewer for the United States Department of Cancer Peer Review Panel. Miranda works with leading researchers, scientists, and oncologists from around the country to determine which cancer research proposals they fund.
This year, Miranda was asked by Dr. Donna Kimbark, Program Manager for the CDMRP, to serve as the speaker for at the Congressionally Directed Medical Research Programs (CDMRP) meeting on Friday, August 27. Dr. Kimbark has managed research funding programs for autism, multiple sclerosis, cancer, and bone marrow failure syndromes. Miranda opened with a Moment of Silence presentation to remind everyone of the importance of the work and the many lives affected.
The CDMRP, created in 1992 via a Congressional appropriation, fosters novel approaches to biomedical research to support the needs of the American public, the military, and Congress.
The CDMRP funds high impact, high risk and high gain projects that other agencies may not fund. All of the programs managed by the CDMRP share the common goal of advancing research, solutions that will lead to cures or improvements in patient care, or breakthrough technologies and resources. The CDMRP strives to transform healthcare through innovative and impactful research.
Thank you, Miranda, for being a part of this team and raising awareness about sarcoma cancers.
Rein in Sarcoma has been asked by KJT Group to promote a study they are conducting for people living with PEComa. They are looking for PEComa patients who may be willing to share their experiences. KJT Group will be conducting 60 minute virtual discussions with qualified patients. By sharing feedback with their research team, you can help improve treatment experiences and outcomes of others like you.
If you have been diagnosed with PEComa and would be willing to discuss your experiences with KJT, complete the survey. You will be asked a few questions about your background and experience. If you qualify for the study, there will be the opportunity to immediately schedule an interview.
Blake Hastings, RIS Board Director, Melissa Davies, Development Director, Dr. Brenda Wigel (UMN), Eric Lien, RIS Board Vice President, Janelle Calhoun, RIS Executive Director, and Tom Boardman, Development Committee Chair.
Rein in Sarcoma’s Board approved a research grant to the 2021 University of Minnesota at its January meeting. The number of grants were reduced based on buget decisions made in the spring of 2020. The University solicited requests for funding proposal from their researchers, blindly ranked them according to national standards, and recommended the proposal by Dr. Jaime Modiano, School of Veterinary Medicine to the RIS Research Committee.
We are pleased to fund this research, and look forward to a presentation on findings at the Sarcoma Research Symposium in 2023. Dr. Modiano has received Rein in Sarcoma research funding in prior grants. He shares with us:
“The data from our previous Rein in Sarcoma grants has helped us secure almost $6M in external grants for sarcoma research from the federal government (NIH and DOD), the state of Minnesota, and animal health foundations. These grants have been instrumental in helping us to complete work that is reported in numerous peer reviewed scientific articles as well as in lay articles. We are extremely proud of our return on investment from this meritorious program.”
Identifying and Characterizing the Cells that Create the Primary and Metastatic Sarcoma Niche | $50,000
Jaime Modiano, VMD, PhD
Jaime Modiano, VMD, PhD – Principle Investigator, Professor of Veterinary Medicine & Research
Aaron Sarver, PhD – Co-Investigator, UMN Medical School Assistant Professor Institute for Health Informatics
Sarcomas, or tumors of connective tissues, are challenging to treat because they tend to invade deep into tissues. This behavior makes it virtually impossible to remove all of the cancer even with very aggressive treatments. But some sarcomas pose even greater challenges because they spread to organs far from the primary tumor. In these tumors, the distant spreading, called metastasis, is the eventual cause of death for patients.
Aaron Sarver, PhD
Primary tumors of bone (osteosarcomas) and of blood vessels (angiosarcomas) are two highly metastatic sarcomas. The assumption with these cancers is that malignant cells have already spread by the time they are diagnosed. Because of this, patients receive extremely intensive therapies that can have severe side effects. Even so, more than half of patients with bone cancer and with blood vessel cancers die from their disease within about 10 and 3 years, respectively. For bone cancer, a 10-year survival might seem acceptable, were it not for the fact that this cancer mostly affects children, adolescents and young adults. It is well accepted that osteosarcomas and angiosarcomas spread through the blood circulation. This has led many investigators to search for tumor cells in the blood. We pioneered this approach for angiosarcoma almost two decades ago. But recent technological improvements provide opportunities to understand how and why the tumor are able to travel to distant sites. In addition, we are now able to find the chaperones that help them colonize new organs and create homes where they can thrive.
Osteosarcomas and angiosarcomas are quite rare in people. On the other hand, both are very common in dogs. We have shown that studying these diseases in dogs can help us better understand, diagnose, and potentially manage them in people. Here, we will use the same approach, studying tumor cells in the circulation of dogs with osteosarcoma and angiosarcoma. We will apply a technology called single cell sequencing. We have already developed methods to find and recover these cells from simple blood samples. Our goal is to determine how tumor cells and their chaperones alter their behavior to support the process of metastasis. The information we obtain from this project will support grant applications to the NIH, DOD, and other agencies. This line of work will help us to identify the cells that are responsible for sarcoma metastasis. In turn, the results will guide development of tests for early detection and to monitor disease progression. And finally, our efforts will provide insights to design new, safe and effective therapies to manage or prevent metastasis.
Charlie Gerk with wife and RIS volunteer, Danielle Gerk
Sarcoma survivor and RIS volunteer Charlie Gerk recently participated in the evaluation of research applications submitted to the Peer Reviewed Cancer Research Program (PRCRP) of the Congressionally Directed Medical Research Programs (CDMRP).
Charlie was nominated for participation in the program by Rein in Sarcoma. As a consumer reviewer, he was a full voting member, (along with prominent scientists) at meetings to help determine how the $110 million appropriated by Congress for Fiscal Year 2020 will be spent on cancer research.
About the PRCRP program
Consumer reviewers are asked to represent the collective view of patients by preparing comments on the impact of the research on issues such as diagnosis, treatment, and quality of life. When commenting on serving as a consumer reviewer, Charlie said that, “he was heartened to know so many dedicated people are working hard on cures for sarcoma”.
Consumer advocates and scientists have worked together in this unique partnership to evaluate the merit of research applications since FY09. COL Sarah B. Goldman, Director of the CDMRP, expressed her appreciation for the consumer advocates’ hard work. “Integrating consumer perspectives into our decision-making process brings energy and focus to our research programs. Patients, caregivers, family members, and advocates help us keep our efforts centered around what is truly important to those impacted. We very much value this critical input from our consumers who help ensure that CDMRP’s work remains critical and relevant,” she said.
Scientists applying propose to support and promote high-impact research for cancer prevention, detection, treatment, quality of life and survivorship, and decreasing the burden of cancer on Service members, their families and the American public. The PRCRP fills important gaps not addressed by other funding agencies by supporting groundbreaking research while encouraging out-of-the-box thinking.
If you are interested in learning more about participating in the CDMRP’s Scientific Peer Review Panels, please contact Janelle Calhoun, Rein in Sarcoma’s Executive Director at (763) 205-1467 or execdirector@reininsarcoma.org.
Dr. L. Chinsoo Cho is an Associate Professor and radiation oncologist at the University of Minnesota.
Dr. Cho has lived many places, but he does not feel adrift. He has lived in each place for quite some time, and always for a good reason. After growing up in the Washington DC area, he attended medical school at George Washington University and completed his residency there. He left for Duke University in North Carolina to begin his training in radiation oncology, but returned to George Washington University to complete it.
From there, Dr. Cho moved to Dallas to join the University of Texas Southwestern Medical Center and work with pre-eminent physician Dr. Eli Glatstein. Training under Dr. Gladstein was like “being a clerk for a Supreme Court Justice.” Dr. Glatstein was a good mentor and a fantastic leader. Dr. Cho gained experience with lung, prostate and breast cancer, in addition to sarcoma.
In 2005 Dr. Cho moved to Minnesota. He visited in September after enduring day after day of 100 degree Texas heat. Minnesota was beautiful and Dr. Cho thought he could live here in beauty all the time. As it happens, winter is cold and long and summer has too many mosquitos, but his family loves it here. And here he has stayed. Today, Dr. Cho’s practice includes the treatment of lung, prostate and sarcoma cancers.
“That’s Challenging”
Dr. Cho stumbled into radiation oncology, a field to which medical students had very little exposure when he was in school. He became involved in treating sarcomas and found them to be “very challenging stuff to treat.” Sarcomas involve every part of the body, and every body part has unique ways it can handle radiation. “Sarcoma is everywhere from head to toe – that’s challenging.” Targeting tumors while protecting healthy tissues is always the goal, and with sarcoma cancers the plans are unique to each person and different almost every time. “That’s what I like,” Dr. Cho said
He says that treating sarcoma cancers is “very challenging,” because they may appear anywhere in the body and often are located near critical body structures. In this work, as in life, each person is unique. Dr. Cho considers radiation oncology to be “a great field,” and he finds success in many different outcomes.
Clinical research is a big interest for Dr. Cho, who seeks to apply technology in different ways to improve outcomes. One cutting-edge tool is image guided stereotactic body radiotherapy, which can deliver precisely targeted beams. This is especially important for tumors, where the target location can change daily with normal fluctuations in the body.
In both prostate and lung cancer, doctors are studying new uses for radiation beams. Studies are being done to test the use of higher-dose and more precisely targeted radiation, given over several days instead of months. There are also ongoing studies comparing radiation head-to-head with surgery in lung cancer. Doctors look for short-term successes and problems, as well as long-term results. Some signs suggest that radiation therapy may be better than surgery, in certain cases. These technologies could be used with sarcoma, though the case would need to be chosen carefully.
Healthy Collaboration
At the University of Minnesota, doctors from many different fields all get together to talk about their sarcoma patients and decide which treatments would be best. The team has been meeting like this for years, and they are getting to the point where they “can almost guess what the other person is going to say.” All are “very comfortable expressing” an opinion, which leads to a great conference. The beauty about this is that each doctor is able to learn details and insights from the other specialists, leading to a well-informed and “healthy discussion” about how to treat. Most often, when the information is complete, the team can come to a consensus about what is best.
With sarcoma, of course, consensus is gained amidst uncertainty. There is a big open question, for example, about the best time to administer radiation. In Dr. Cho’s mind, pre-operative radiation is better. But better, he reminds us, “has to be defined collectively. What’s better for me is not better for Dr. Cheng.” When radiation is given before surgery, radiation oncologists can see their target better, decrease the dose and minimize the surrounding tissues that are affected. Yet pre-operative radiation can make surgery more difficult and doubles the wound healing problems after surgery. The best answer will vary for each patient, depending in part on the tumor size and location, as well as the important body structures located nearby.
Many Successes
Many outsiders consider radiation oncology to be a depressing field. Yet for half the patients, the doctors treat for a cure. “We want to get rid of it.” For the other half, treatment is designed to be palliative, which means to help with symptoms, pain and bleeding. “Each patient has a different goal,” Dr. Cho explains, and when pain is relieved, “we consider that a success.”
One difficult part of Dr. Cho’s job is trying to convey the vast amount of scientific literature about radiation therapy in a way that the patient understands and can accept. It is hard, for example, to explain the toxicities of radiation “without scaring them to death.”
And what is the good part? “When patients get better. That’s the reward.”
Dr. Felasfa Wodajo was “humbled and honored” by our request to interview him, because he finds that “actually, it is the patients fighting sarcoma who are the real stories.” An orthopedic oncologist, now is a member of Virginia Cancer Specialists. He has lead the Musculoskeletal Tumor Program at Virginia Hospital Center. His Oncology Nurse Coordinator meets with patients and families, and likes to refer them to support groups and resources. She found the RIS Sarcoma Patient Starter Notebook on line. As Dr. Wodajo recalls, those books “lit us up” and they began offering the books to their patients. Some patients became so moved they decided to give back to RIS, and a great connection has been strengthened.
A long and winding road
Dr. Wodajo emigrated to the United States from Ethiopia in the fifth grade, and his family moved to the Washington DC area, where he now lives. He loves Ethiopia, which is a beautiful country, and recommends the book “Cutting for Stone.” There is a huge Ethiopian community in the DC area, which still includes many from his family.
His Minnesota ties? His wife was adopted into a second family while waiting tables as a teenager in Minnesota, then completed nursing school in the area. They have returned to Minnesota many times for family visits. “It doesn’t get any more Minnesota than that!”
He loved studying biology in high school and college, so thought he may become a scientist. The year after he graduated from Princeton, he immersed himself in a lab. He says it was “intellectually interesting but not for me.” He felt lonely and bored by himself all day, not interacting with other people.
He decided to go another way. At the University of California, San Francisco School of Medicine, as is typical, he rotated through many different fields of practice. As a medical student, “you sample everything.” In the end he decided on general surgery, and went into residency for this. He decided he preferred orthopedic surgery. A good choice, as it happens. Dr. Wodajo liked orthopedic surgery then, and he still loves it now.
During his orthopedic residency at Howard University, he rotated through many different practices within that specialty. Oncology grabbed him then. “Something lit up.”
Looking back, this makes sense. Orthopedic oncology brings back that biology interest. The way cells behave “makes enormous differences in outcome for patients.” It also presents interesting challenges. But it still maintains the mechanical aspect of orthopedics during reconstruction surgery, when doctors think about forces and vectors.
A really important part
But a primary reason Dr. Wodajo keeps doing this work is the person part of it. For this part of a person’s experience, orthopedic oncologic surgeons have a really important part. The way they do their work makes such a difference. Doing something big is not always best, and sometimes the most important job a doctor has is to hold back unnecessary or unhelpful interventions.
Sometimes, he says, “we do a great job, patients have great outcomes, and we feel like walking on water.” Yet one of the families most dear to him is the kids of a man who died of sarcoma. He was an “incredibly intelligent, remarkable man” with no good treatment options, and he and his family needed wise guidance as they navigated this path.
One thing doctors must do is to talk with patients and families about the hard news of sarcoma. Doctors need to be blunt, conveying information in a way that they are not lying about a person’s condition or chances. But “there is a very long distance between blunt and harsh.” It is important to understand that “statistics are not predictive, they’re only descriptive.” Statistics like survival percentages are a piece of information, but people should know “it may not be as helpful as you think it is.” The true reality is the wide variation in different people with unique circumstances who have individual outcomes.
In the broadest sense, it is challenging to make the right decision, to know what to do. There are many options, and it is frustrating that there is so much room for the options to improve. Doctors who treat sarcoma patients wish they had better techniques, better implants, better chemotherapy. They wish they could do more. But it isn’t helpful to say that to the patients who sit in front of them.
I told Dr. Wodajo he could say it to us, because we at Rein in Sarcoma are well enough aware of the limits, but also are invested hopefully in changing the future.
Raising awareness
In the Washington area, orthopedic oncologists don’t see very many cases where a general surgeon has operated on a sarcoma without knowing it. He’s not sure why, but said “I’m happy about that.”
Perhaps one reason is an oncology review course Dr. Wodajo has presented annually for the last twelve years. Each class reaches 20 to 30 orthopedic residents in the region, and “each of those is a multiplier,” going out into the world to share their knowledge. A spark for the future: perhaps it would be important to reach general surgery and family practice residents too, because they may present the first contact for patients, but may not encounter sarcoma more than once or twice in their career.
As we know, each contact is important. Each moment may be sacred. So we very much appreciate teams like this Virginia team and leaders like Dr. Wodajo. Thank you for this work!
