Joan Venticinque, PAC member

Joan Venticinque, PAC member

As a two-time cancer survivor and advocate, Joan brings her first-hand experience augmented by the experiences of others to provide the patient perspective to research studies and the PAC. Professionally she has worked in cancer patient support and serves as an advocate member on numerous funded research grants and scientific review committees.

Recent posts by Joan Venticinque, PAC member

3 min read

Wrestling with the Monster That is COVID-19

By Joan Venticinque, PAC member on Apr 8, 2021 7:55:47 AM

It all started with a headache

Twice I have heard the words, “You have cancer.” They brought fear, anxiety, shame and guilt. Cancer patients often question whether they brought the illness upon themselves. Did I eat the wrong food? Was I too stressed out? Did I not exercise enough? 

When I received the call that I was positive for COVID-19 those same emotions came quick and fierce. How did I get it? Did I not use the hand gel religiously? Who have I exposed?

It started with a severe headache and chill I couldn’t get rid of. Upon first appearance of these symptoms, I wasn’t thinking COVID-19 as the cause; maybe just a migraine and the cold weather were the culprits. The next day fever, body aches, fatigue and joint pain were added to the list of symptoms. I was still questioning if this was COVID-19 as I went to the drive-through testing site. Most of us think COVID-19 will not happen to us. Then it does, and when that denial falls apart it is frightening.

By January 2021 we all heard the horror stories of what a monster COVID-19 could be. These personal accounts would incite fear in anyone. Would today be the day I start having trouble breathing? Would I have to go to the hospital, and would I make it out alive? Would I suffer from Long-COVID?

Monoclonal antibodies

As it turns out, getting a COVID-19 test at a major research hospital is a golden ticket to cutting-edge treatment. The day after I tested positive, a research team called to tell me I was eligible for monoclonal antibody treatment and asked if I was interested. Even though it was still a treatment under FDA emergency use authorization, I jumped on it. It was a way to increase my odds of staying out of the hospital. 

The next day, I drove alone to the hospital and waited outside for the nurse to come and get me. I was taken to a private room and soon the IV was in and I watched as those antibodies dripped into my vein. I was fearful of side-effects, but I was more afraid of COVID-19 taking me on a longer unpleasant ride. As I lay there, I was watching a live Zoom presentation on ‘COVID-19 and the Immune Response’ from the Precision Medicine World Conference. Ironic, I thought as I lay there getting immunotherapy for COVID-19. My second thought was just how lucky I was. I live in the right place and knew the right questions to ask and had the time and ability to get the therapy. I thought about the millions of COVID-19 patients who did not have the access I did, and how unfair it was that this therapy was out of reach for so many people. COVID-19 has laid bare the inadequacies of the US healthcare system, and how the populations affected the most from COVID-19 don’t have access to the care they need.

 It came for my family

COVID-19 didn’t just affect me physically and mentally, but socially as well. I had an incredible amount of support when I was diagnosed with cancer. COVID-19 is a much different monster. You are isolated not just from friends and co-workers, but from family. There are no reassuring hugs four times a day. The fear of how bad it might get are thoughts that are hard to drive away when you are alone.

Turns out I wasn’t alone for long because the big scary monster had come for my family, just as it has for millions of others. My 2.5-year-old asymptomatic grandson tested positive a week after me. Three days later his dad, my son, tested positive. The feelings of guilt weighed heavily on me. Did I give this to them? We had decided when COVID-19 started we would keep our family bubble together and safe. We were all being so careful. How did this happen? My son and grandson moved in with me and my diabetic husband moved out. My daughter-in-law was now alone with her 3-month-old. For the next 3.5 weeks we all lived our separate COVID-19 lives. Finally, after almost a month at “Nonni’s COVID Camp” my son and grandson went home. I don’t think I have ever been more exhausted in my life. Chasing and playing with a 2.5-year-old while trying to recover from COVID-19 is not on the doctor-ordered recovery plan.

The Hunger Games

I have recovered, with some lingering taste issues, fatigue, and COVID-19 brain fog. Those emotions of fear, shame and guilt are still there but I am working on them. I have read that some side-effects get better after a vaccine. Because I had the monoclonal antibody treatment, it was recommended I wait for 90 days to get my vaccine. Now that the eligibility for vaccines has opened to younger age groups, I can’t find any available appointments. Living in a state with 39 million people and trying to get a vaccine is like the Hunger Games. But at least I am still around to play, and the monster didn’t win.

 

4 min read

For Medable’s PAC Members, Blood Donor Awareness Month is Personal

By Joan Venticinque, PAC member on Jan 19, 2021 9:14:55 AM

Every 2 seconds, someone in the United States needs blood. Individuals will be in car accidents, need emergency organ transplants, give birth to babies in critical condition, or have conditions which require regular transfusions and need chemotherapy. Whether they receive whole blood, or red cells, platelets or plasma, when you donate you are making a generous life-saving gift. Richie Kahn, optic atrophy patient advocate and Medable Patient Advisory Council (PAC) member said it best.

 

"Though I only committed to regularly donating blood in the last few years, I can confidently say that it is a simple and incredibly impactful way to make a positive change in the community. By giving blood, you save up to three lives. I can't think of many other opportunities where I can make such a big difference. I just wish I had started donating sooner." –Richie Kahn

Whether donating blood or receiving it, this gift of life is of personal importance to many members of Medable’s PAC.

Jenn McNary, Rare Patient Advocate and PAC member is a mom of a son with an immune deficiency disorder. She counts on the many people who donate so her son can receive the blood plasma he regularly needs.

 

James receives weekly blood plasma infusions. This has made it possible for him to live a fairly normal life without the fear of major infections. James does not have a working immune system, he has primary humeral immune deficiency. Basically, this means that he never develops the immunity to most viruses and infectious conditions to which the general population is generally immune. Before he started getting his infusions, James, by age 10 was hospitalized multiple times with massive infections affecting his ear and skull cavity, body and throat. One such infection caused him to be hospitalized,  intubated, and sedated for almost a week because he lost his airway due to swelling. I am grateful to the people that take the time to donate blood and blood plasma because to families like mine, it makes a huge difference in quality of life. James doesn’t have his own immunity, so he borrows it from the hundreds of thousands of people who donate plasma.” –Jenn McNary

Sumaira Ahmed, is the Founder of The Sumaira Foundation for NMO, and Medable PAC member. She lives with Neuromylelitis Optica.

"Plasma has saved my life not once, but twice. Thanks to a procedure called plasmapheresis / plasma exchange [PLEX], my care team was able to restore some of my vision and all of my mobility that had been severely affected from relapses due to neuromyelitis optica. I am eternally grateful for those who donate plasma; it is because of them that I am living the quality of life I live today." – Sumaira Ahmed

Both James and Sumaira need plasma donations. Plasma is the liquid portion of blood that suspends the red and white cells, and platelets. Plasma helps to induce clotting and control bleeding. Plasma is important depending on the patient’s underlying disease. Allison Kalloo, founder of Clinical Ambassador and iParticipate Inc. and PAC member, is a regular plasma donor.

“After always being denied the opportunity to donate blood at blood drives (apparently, no amount of spinach consumption was ever enough for me not to be labeled "too anemic" for the Red Cross), I was surprised and delighted to discover that my iron levels are within range for plasma donations. I have been a twice-weekly plasma donor for two and a half years because I think my aversion to needles is a small price to pay to make a life-saving contribution.”

 –Allison Kalloo

For me blood donation became personal after suffering a hemorrhage after my third cancer surgery. I remember the doctor calling for pints of blood as I was being rolled into the OR for emergency surgery. I was never so thankful for the generous people who made sure I had the blood I needed when I needed it the most.

“I don’t donate blood, I give it and within that nuance consider it as a gift to another person who is in need. It’s not a gift in the traditional sense, but more important it truly is the gift of life. I think the decision to give blood becomes easy – maybe even heroic - when a person considers the impact on another’s life. It might even be that one offering that saves or extends a life.” –Paul Kidwell, Parkinson Caregiver and Medable PAC member

My mother instilled in me the importance of blood donation. I was always impressed with her many “10 Gallon Donor” pins dangling from her keychain. She never missed her regular blood donation appointments. As a child I couldn’t wait until I hit that magic age and weight where I could start to donate blood.

After numerous attempts at donating, I discovered I have a blood clotting disorder which makes it difficult to ‘fill a pint’ in the required time. There are many reasons a person may not be able to donate blood, but there are still things you can do to help. I am still able to donate blood for medical research, and as with Allison, she donates plasma. You can host a blood drive at your place of business, community organization or school, help spread the word about the importance of donating on your social media and visit your local blood donation center and volunteer to help.

In the time it took you to read this, approximately 622 people needed blood in the United States. Jenn, Sumaira and I cannot thank Richie, Paul, Allison and blood donors enough for their life-saving gift. I hope during Blood Donor Awareness Month you consider donating. Here are some organizations that can help you find a local blood donation center:

AABB

America’s Blood Centers

American Red Cross

Armed Services Blood Program

Blood Centers of America

 

 

 

6 min read

No One Should Walk a Cancer Journey Alone/Lessons from My Father

By Joan Venticinque, PAC member on Oct 7, 2020 4:39:35 PM

In 2020, over 276,000 American women and 2,600 men will be newly diagnosed with breast cancer. For these individuals, Breast Cancer Awareness month is especially poignant. Those hearing  the words ‘you have cancer’ quickly realize the importance of having a support network as they move through diagnosis, treatment, and survivorship.

PAC Breast Cancer Awareness blogI had the pleasure of interviewing Dolores Moorehead who has supported cancer patients for over 30 years. Dolores Moorehead, BS, MS, APCC, is the Lead Client Navigator/Multicultural Client Support Clinician, at the Women’s Cancer Resource Center (WCRC) in Berkeley, CA. The WCRC offers free services to people diagnosed with cancer, with a focus on those who are low-income, people of color, and members of the queer/trans community. Among her many roles, Dolores facilitates the Sister to Sister support group for African American/Black women diagnosed with cancer. Prior to joining WCRC in 2002, Dolores worked as the Patient Services Manager at the American Cancer Society for more than thirteen years. 

 

     Dolores, what drove you to work in cancer support?

     Dolores:  I can say that one of the things that really drove me to work in this field was the         fact that my father was diagnosed with Hodgkin's lymphoma when I was 14, and culturally       my younger sister and I were not allowed to tell anyone. Also, as a teenager I was afraid         that my father would die and I did not have a place to talk about it. When I started working       in cancer support, I realized how important it was for patients to never walk a cancer                 journey alone and that they needed to have someone with whom to share their story. I am      dedicated to do my best to provide that attentive ear with the resources, help and support        that patients need.

 

     How do you approach supporting the women in your community?

     Dolores: When I chose to work in mental health, I realized it was important to look at the           cultural relationships of my clients because relationships are how many people of color             build trust. It is also important that I look like them and let them know that mental health is       important. To truly support someone, I look at all aspects of someone’s identity, not just           race or gender. It is their religious or spiritual beliefs, their educational background,                  disabilities, visible or not, and what has impacted them in life. I strive to see that person for      who they really are. 

 

    “I think it's important to admit that they are the experts of their life,        you aren’t, so asking rather than assuming, and also                              acknowledging if they say something and you don't really                      understand what it means, be big enough to say, ‘I haven’t heard          that before, can you explain it to me’. This is a way to build trust”

 

     In October we seem inundated with pink ribbons. How do women in your community                 who’ve had an experience with breast cancer feel about Breast Cancer Awareness Month?

     Dolores: From my experience, African American survivors have really connected with pink       ribbons and breast cancer awareness month and that’s good. For me, I consider how I             utilize that month to educate people about breast cancer. I remind them that breast cancer       occurs throughout the whole year and that while it gets highlighted in October, it's                     important to take the message of awareness and continue it year-round. 

 

     The Covid-19 pandemic has exposed existing racial disparities in health care. With your           experience in navigation and supporting patients, what steps do you see that need to be         taken in order to increase participation of people of color in clinical trials?

     Dolores:  While there is more awareness now about the importance of getting individuals         of color to participate in clinical trials, recruitment really hasn’t changed. One of the things       that I've really thought about is how do you bring individuals that you want from the                   community on board? How do you make them feel comfortable? How do you let them               know their words and thoughts are important? You can do this by mentoring community           members, tell them you understand this is new to them, yet, YOU make them feel                     important because they are. That will make an impact. 

     These community members can go out to their faith-based communities, sororities, and           other community venues and teach others about cancer research. People learn about             research and clinical trials from a trusted  individual who is a part of their group and looks         like the people they are serving. It all comes down to building trust.

 

    “I think it's important for researchers to know their community and        then to pull the gatekeepers from that community so people will            realize, oh, she is like me and I can trust what she's saying.” 

 

      You have to do the groundwork first. It’s important for researchers to be willing to come to        the community and be willing to hear those hard ‘Whys’. Why are you here? Why do you          want to do a study on us? It is really empowering to an individual to be able to ask the              questions. For communities of color who have not felt empowered, it’s important to let              them know they have the right to ask questions and receive answers. Then when the                study is over, the most important step for researchers is to return and share the                        information, and what is going to happen next. 

 

    “I really think that it is important for the researcher to acknowledge         the history of clinical trials in people of color, for example, the              Tuskegee Airmen study and Henrietta Lacks, and explain that this        will not happen again, and this is how they are different.” 

 

     One thing that’s true whether I am supporting women with breast cancer or talking to folks       who may be clinical trial candidates, is that we have to meet them where they are and we         have to be quiet, sit back, have humility and listen even when it becomes uncomfortable. It       is only then we can understand the community and build trust.

 

I want to thank Dolores for taking her time for this interview and for her tireless work in supporting women with breast cancer. Breast Cancer Awareness month is more than just cancer awareness especially for people of color. As Dolores has stated, it is understanding people’s cultures, beliefs, relationships and history. It is listening to their stories, answering their questions and above all empowering them to be partners not only in their healthcare but as important contributors to clinical trials.

 

This interview has been edited and condensed for clarity.

Topics: Breast cancer awareness
3 min read

Prostate Cancer Awareness Month: Navigating an Increasingly Complex Disease

By Joan Venticinque, PAC member on Sep 14, 2020 10:56:38 AM

prostate-awareness-month-1

During September, Prostate Cancer Awareness month draws attention to prostate cancer screening and those living with the disease. Over the years, my grandfather, father, and four close friends have received a prostate cancer diagnosis. Their ages range from 40s to their 90s and their diagnoses varied from early stage through metastatic disease. For all of them, their diagnosis was both unexpected and distressing. They were fearful and overwhelmed at the prospect of being asked to take a more active role in their treatment decision-making, often without understanding the diagnosis, treatment plan, or prognosis.

–“I have seen three different doctors, and all recommend a different treatment plan. How do I know what to do?” –Jeff

There is so much confusion about screening and treatment for prostate cancer. “I’ve heard measuring PSA is not an accurate test.” “It’s slow growing, so why worry?” “They say all men will have it [prostate cancer] in their lifetime, so why go to the doctor?” “How will the different treatments effect my sex life?” The array of available treatments varies widely from surgery to radiation, anti-hormonal medication, immunotherapy, gene therapy, and watchful waiting. What do patients believe and how do they decide what to do? These questions demonstrate the need for clinical trials that provide the answer of the ‘right’ screening and treatment for the ‘right’ patient.

–“I did as much research as I could and had two second opinions. I found a clinical trial for a new type of radiation treatment. I was glad I did. It was important that I found the right treatment for myself.”–Jack

New Treatment Options as a Result of New Screening Modalities & Therapies-graphic

 

Clinical trials play a vital role in moving new screening modalities and treatments to patients. Recent screening trials have included combining magnetic resonance imaging (MRI) with ultrasound for more accurate prostate biopsies. This method can increase the detection of high-grade prostate cancers while decreasing detection of low-grade cancers that would not progress. New imaging techniques also include using a PET scan that looks for a specific protein called prostate-specific membrane antigen (PSMA) found on prostate cancer cells.  The ability to detect very small amounts of metastatic prostate cancer could help doctors and patients make better-informed treatment decisions.

Targeted Therapies for a Complex Disease in the Age of Precision Medicine

Targeted therapies based on PSMA, the same protein that is being tested for imaging prostate cancer, are being studied for radiation treatment.  The molecule that targets PSMA is chemically linked to a radioactive compound. The new compound can potentially find, bind to, and kill prostate cancer cells throughout the body.

 Over the last few years, several new approaches to hormone therapy for advanced or metastatic prostate cancer have been approved for clinical use. Many prostate cancers become resistant to standard hormonal treatment over time. After successful trials, three recently approved drugs have been shown to extend survival in men with hormone-resistant prostate cancer.

Current trials are using immunotherapies that work with the immune system to fight cancer. These therapies can either help the immune system attack the cancer directly or stimulate the immune system in a more general way. Currently, vaccines and checkpoint inhibitors, two types of immunotherapy, are being tested in patients with prostate cancer. 

–“I relied on my doctors for my treatment plan, but it wasn’t until I joined a support group and realized everyone was different with different choices, including clinical trials, that I felt more comfortable with my decisions.” –Larry

 

right_decisions+treatments_patients_medable_dct

 

My family members and friends eventually all made their treatment decisions. Given their age differences and goals for their therapies, each one had a different treatment plan. Although my grandfather is gone, others live with side-effects. Still, others are on treatment for the rest of their lives without much in the way of side-effects. All benefited from patients who participated in clinical trials. Without clinical trials we may never understand what the ‘right’ screening and treatment will be for the ‘right’ patient.

 

Topics: decentralized trials PAC RareDisease prostate cancer cancer awareness