ecco una intervista alla fondatrice

 fonte.parade.com/healthystyle

Kathy Giusti with her children, David, 12, and Nicole, 15.

What does cancer look like?

Judging from the way Kathy Giusti took on her diagnosis of multiple myeloma in 1996, cancer looks like a serious case of profound hope. Then ask this wife, mother, and former pharmaceutical executive to tell you the worst thing about cancer, and she'll likely say, "not fighting back." Because Kathy Giusti did fight back, big-time.

She used her pre-med knowledge and her Harvard MBA to found the Multiple Myeloma Research Foundation (MMRF). Then she used her experience working for pharmaceutical companies to circumvent the system and jump-start research to the tune of four anti-myeloma drugs approved in just four years, 20 clinical trials initiated, and drugs now being looked at for other cancers. Her goals are to find better treatments and, ultimately, a cure for this deadly blood cancer.

Here she shares some of what she has learned about life as an unlikely cancer survivor and activist.

When did your personal cancer journey begin?
It was early 1996. I had some vague symptoms, such as fatigue, and was fortunate that my doctor checked the protein level in my blood during a routine workup, which led to my diagnosis of multiple myeloma.

Like me, many patients with myeloma have vague or no symptoms or have symptoms that are commonly seen with many other conditions. In fact, it is not uncommon for myeloma patients to be diagnosed during a routine blood test like I was.


What exactly is multiple myeloma?
Multiple myeloma is a cancer of the plasma cell, a type of white blood cell that plays an important role in the immune system. Multiple myeloma is the second most common blood cancer after non-Hodgkins lymphoma. It is treatable, but remains incurable.

When the doctor said, "You have cancer," how did you feel?
I was devastated! I was 37 years old with a one-year old daughter. My career as a pharmaceutical executive was really taking off. And I was told I could expect to live three years, maybe four. At the time [early 1996], there were very few effective treatments for myeloma, no promising therapies in the pipeline, and very little research investment in the disease.

You seem like a "take charge" sort of person. How did you deal with such a devastating diagnosis and prognosis?
I immediately started to educate and empower myself with information about the disease. In 1996, it wasn’t as easy as it is now to get information. The Internet was still in its infancy, so, using my pharmaceutical background, I spent hours at the library pouring over scientific journals and abstracts and anything else I could get my hands on.

To be honest, there was not all that much on myeloma to read about at the time. I then took it to the next level and reached out directly to researchers, clinicians, and a handful of companies focusing on myeloma that I had learned about through my own research. I also attended medical meetings like the American Society of Hematology annual conference and the International Myeloma Workshop. Through this outreach, I was able to connect with people who could help make a difference.



Initially, you reached out to the medical community. Did you also reach out to family and friends? Isn’t a support system like that crucial for every cancer patient?
I would not be where I am now without my friends and family. My twin sister, Karen, co-founded the Multiple Myeloma Research Foundation (MMRF) with me. From our first fundraiser to my stem cell transplant, for which she was my donor, she has always been there for me.

From the moment of my diagnosis, my friends and family rallied around me, making sure I knew they were there if I needed them. They helped make our first fund-raising event, our annual Fall Gala, a success and gave me the confidence to establish the MMRF. My classmates from Harvard Business School helped write the MMRF’s first business plan and they and other professional colleagues formed the Foundation’s first Board of Directors.

And finally, my wonderful husband and children and my dear friends, who make me laugh and keep me sane just by being there. To be here today, sharing memories with my friends and family that I never could have imagined when I was diagnosed is just incredible.


There is still no cure for multiple myeloma. What keeps you motivated?
My family inspires me daily. My tenacity comes from my will to continue seeing milestones in my children’s lives, and my support comes from my husband. My sister, Karen, has always pushed and supported me. As my identical twin, Karen also was my donor when I had my stem cell transplant, a procedure that resulted in a complete remission and which has allowed me to be here today.

What advice about starting a family do you have for people undergoing cancer treatment? Isn’t it true that with certain cancers, like Hodgkins disease, women are told never to get pregnant?
It is always a personal decision to start or grow a family. As a twin myself, it was really important to me that my daughter have a sibling to grow up with, and I did everything I could to make that happen. But of course there are things to consider when you have cancer, so patients need to work with their doctors to determine what is safe for them.

Nicole, my "baby girl," is now 15 and in high school, and, despite the odds, my husband Paul and I also have a son, David, 13, who is in middle school.

ou were fighting to save your own life. How did you manage to start the Multiple Myeloma Research Foundation?
When I was diagnosed and realized that there was an empty pipeline for myeloma, no treatment innovations on the horizon, and little to no interest or research investment in this disease, I knew I needed to do something -- not only for myself and my family, but for everyone else with this "orphan cancer." I desperately wanted my daughter to remember me and thought that if I lived for five years, maybe she would have memories of her mom. With my background in both science and business, and my sister Karen’s law background, I knew that, together, we could make an impact.

With the help of our friends and colleagues, we held our first fund-raising event, a Fall Gala that we still hold annually today, planned from my living room, which raised more than $400,000 purely for myeloma research. Its success gave me the confidence and courage to take risks and to believe -- with strong business and scientific plans -- that we could really make a difference in this disease. We founded the MMRF in 1998 with the goal to fund research that would result in new treatments and, ultimately, a cure.

You Can Survive Cancer, I Did

You referred to myeloma as an "orphan cancer." Can you explain that term?
Any so-called "orphan" disease is one that affects fewer than 200,000 individuals in the U.S. -- take, for example, myeloma, which is diagnosed in approximately only 20,000 people every year and has an overall prevalence of approximately 65,000 in the U.S. The pharmaceutical industry does not typically invest heavily in research and development for orphan diseases because of the limited market. As a result, there are often few treatment options available for patients.

Initially, you were given just three years to live. That was 14 years ago. How do you explain your remarkable success as both a cancer survivor and the head of a research foundation?
Multiple myeloma is a very complex cancer with several subtypes of the disease. Some patients with certain genetic characteristics respond to treatments better and for longer than others. At the time I was diagnosed, there was no way of predicting that I would be on one side of the median survival versus the other. I have an outstanding medical team under whose care I’ve been since my diagnosis and who have always provided excellent care. And I am fortunate to have benefited from the treatments the MMRF helped to bring to patients and blessed to have an identical twin who, of course, was a perfectly matched donor for my stem cell transplant.

As for the MMRF, I attribute its success to staying committed to our mission and never losing focus on the patients and families for whom we so urgently work. The reality of relapse is a powerful motivator for all of us at the MMRF to work as hard and smart as we can, and a culture of speed, efficiency and results drives all we do. We have long seen the values and synergies in working collaboratively and have built incredible partnerships with academia and the biotech and pharmaceutical industries to get the job done.

Our visionary team, including a Chief Medical Officer and Chief Scientific Officer, stops at nothing to break down the barriers allowing research and drug development and continually pushes the frontiers of scientific discovery. We have developed and are advancing an incredible research portfolio of programs ranging from exciting new clinical trials to making personalized medicine a reality for myeloma patients. Our efforts have always been supported by an amazing Board of Directors who challenge us to aim high and be our best and by phenomenal donors whose generosity fuels our every success.

Do Alternative Cancer Therapies Work?

Anything else you can share with us about multiple myeloma? Isn't it still one of the deadliest forms of cancer?
Yes, multiple myeloma is still uniformly fatal. It has one of the lowest 5-year survival rates of all cancers at just 37 percent -- meaning that only 37 percent of patients are alive five years after being diagnosed, compared with, for example, 89 percent of breast cancer patients or 64 percent of colorectal cancer patients.

What treatments are out there for multiple myeloma?
The MMRF helped bring patients four new drugs -- Revlimid, Velcade, Thalomid and Doxil -- that are considered to be standard therapies for the treatment of myeloma and which have extended the lives of many patients and almost doubled life expectancy for some. These drugs are now used in combination with each other as well with as steroids, such as dexamethasone and prednisone, and with conventional chemotherapies, such as melphalan and cyclophosphamide. There is also high-dose chemotherapy followed by a stem cell transplant for patients who are eligible.

Drugs like Zometa and pamidronate are also used to help prevent bone pain, fractures and other complications of the disease. Unfortunately, none of these treatments works for all patients and none works forever. As patients relapse, they are looking to MMRF to make sure the next treatment is there when they need it. Several promising ones are now under study in clinical trials through our research model, the Multiple Myeloma Research Consortium, and at various stages of development.

Dramatic Breakthroughs in Cancer Treatment

How can a patient find a doctor who specializes in multiple myeloma?
Finding a good doctor is one of the most important decisions a cancer patient can make. I know it is not an option for all patients to see a doctor who specializes in myeloma, but if possible I encourage them to see a specialist, at least for a consult, who treats a lot of multiple myeloma patients and is up-to-date on the latest research and clinical trials. Our Web site, www.themmrf.org , has a list of cancer centers that specialize in treating multiple myeloma.

You are suggesting, then, that myeloma patients get a second opinion?
I believe that the more information you have, the better. I always encourage patients to get a second opinion, especially before starting treatment. If a patient is able to have a consult with a hematologist-oncologist who specializes in myeloma, even better.

How can family and friends help?
There are so many ways to help. For starters, they can join one of the MMRF's fund-raising events or create their own event to raise funds for research that will help bring patients new treatments. They can also create an MMRF Tribute Page to support or honor a friend or family member with the disease and to offer words of encouragement and hope. Information on both of these is on our Web site, www.themmrf.org .

How can myeloma patients find others to connect with?
MMRF Myeloma Mentors are a wonderful group of patients who share their experience with the disease with other patients, as well as others in the community. Participating in one of our events -- whether a fund-raising event or an educational program -- is a great way to meet other patients and families in your area. Joining a support group is also an option for many patients. In addition, we have several social media outlets -- like Facebook and LinkedIn -- where multiple myeloma patients can connect with other patients worldwide. Check out our Web site www.themmrf.org for more information about all of these.

Can you suggest a few simple strategies for managing cancer?
I call these my "five top tips" for coping with cancer. Regardless of the type of cancer you have:
1. Learn all you can about the disease.
2. Find a specialist.
3. Know your treatment options.
4. Plan for the future.
5. Empower yourself by getting involved