Moderator:
Welcome to Viewpoint with our guest, Bart Knaggs. Bart, thank you for joining us, and let's begin.
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Bristol, Va.:
How did you get involved with Lance and his cancer treatment?
Bart Knaggs: Lance was a bit overwhelmed at first - a business partner of mine at the time had had testis cancer - the most important advice he could give me was to encourage and help Lance to take control of the treatment - to seek the most info, the best docs, and to hold them all accountable...
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Dallas, Texas:
At any point during the Tour of Hope did you ride along with Lance? What was that experience like?
Bart Knaggs: Yes, we rode together at night, and several times during the day - the night riding was great - I even beat him for a city limits sign sprint. He brought a lot of energy to the riders, and there were people lining the streets in small towns at 1 in the morning - very cool.
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Ann Arbor, Mich.:
You helped Lance through his diagnosis and treatment and now you are trying to find a new treatment that may cure your brother's leukemia. What can you tell caregivers of people living with cancer?
Bart Knaggs: Man, get involved. It's daunting to try and understand all the info - it is so complicated. Just be there to help the patient and to try to understand. I believe the patient is in charge of their treatment - they have to manage the doctors, nurses and other folks around. Nurses are key emotionally, and to take more time to explain things than doctors normally have. Be brave to face the facts, and look for every chance to gain advantage against the disease. Ask questions, build rapport, give good feedback, pay close attention to everything the patient is experiencing. And, keep the patient in a fighting spirit.
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Haverford, Pa.:
I know nothing about the technical aspects of cancer treatment, but I agree that it's important to participate in research. How do learn what I need to know to intelligently discuss a trial with my doctor without having to take a college course in anatomy?
Bart Knaggs: Good question. There is so much to learn. Build the blocks of knowledge base up slowly. Take notes. For me, I found outside doctors which could help me make sense of it. There is a lot of good info hanging around the waiting rooms at MD Anderson where my brother is treated. Use your time around all of that to build your understanding. There are areas where I don't try to understand - that are too detailed. Go to the web and read about the research, cancertrialshelp.org, then buy a nurse a cup of coffee or a donut and ask them to help you make sense of it. Then, when you talk to the doc, you can discuss the options intelligently - you don't need the PhD, just display that you have made an effort. You can do it.
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Philadelphia, Pa.:
Is or was your brother part of a clinical trial? Aren't clinical trials an important part of the research? People seem to know so little about clinical trials. How can we help promote awareness to the public and doctors? Or do you think this is an important part of research, but not as important as other forms?
Bart Knaggs: Clinical trials are crucial - they are the way we advance treatments. It is supply and demand economics. There are lots of supplies of therapies and drugs, we just need more participants - more patients to ask the doctors about trials and to show a willingness to get involved. My brother has had a lot of unique treatment - some stage III trials, and mutliple custom regimens. Many of the things done at MDACC are trials. I've donated stem cells for transplant twice - one method was a trial, and the procedure now is routine - not long ago it was science fiction. We rode across the US so people would feel comfortable asking about trials - it is the best way for a patient to ensure they get the best treatment - make sure all options are explored.
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Baltimore, Md.:
How can I know that the research being conducted won't do more harm than good? Were you ever afraid that you might be supporting a decision that would come back to haunt you if something went wrong?
Bart Knaggs: You know, there is always that fear b/c the decisions you are facing have such profound consequences. But, that is just part of the situation. So, you must be thorough and incisive in your inquiries and analysis. You have to be confident in your docs and your hospital, and you have to act - not acting will not get you a cure.
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Des Moines, Iowa:
I was wondering how you felt this effort to increase awareness about cancer clinical trials is going. We've had four family members pass away in the past two years from various cancers and had never really heard much about clinical trials. Thank you for all your efforts.
Bart Knaggs: We've got to work harder. We had 33,000 people sign the cancer promise - www.tourofhope.org, we're going to keep up the effort. I didn't knwo much about trials a while back, now I do, now I go on the web to talk about it. Be an advocate, advise your friends, support causes. We'll get the snowball up to size before soon...
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Des Moines, Iowa:
What do think is THE most important thing a caregiver can do for someone with cancer?
Bart Knaggs: Be there. Listen and ask how to help. Remember that it is about them. Help them each day to have the mental and emotional will to commit everything they have to it. Talk about the treatment, build a team around them.
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Paris, France:
Bart,
How is your brother? What was the best part of the Tour of Hope for you? I hope all is well with you!
Lil
Bart Knaggs: Lil. David is preparing for a third transplant in about two weeks. He is very strong mentally, and forcing down as much food as he can, but is having trouble adding weight. One last round of chemo before transplant, and Isabella's birthday is Monday the 24th, so a big week ahead...
Tour of Hope? I think riding in the rainy, wet, 40 degree night in Ohio - it was so miserable we sang every song we knew, including christmas carols - it was hell on the ears, but it kept us warm and got us through it. I loved that ride.
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Vienna, Va.:
As a rider in the local Tour of Hope ride here in D.C., I have had more conversations with people about cancer than I ever have before. Although the discussions have covered a number of cancer-related topics, the one issue that I always here is "How do I know if I'm at risk?" which is followed quickly by "How does someone know if they have cancer?" I've never had a good answer for either of these. Can you offer any guidance?
Bart Knaggs: I think we are all at risk. Nat, one of my team mates says, he's just waiting for cancer - it will hit most of us. Get check-ups, but mostly pay attention to your body, live healthy. Don't be afraid to go see a doctor with a false alarm.
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Orange City, Fla.:
My wife, I, relatives, and many friends fought her breast cancer for two years before she died January 17, 2003. She had an aggressive form of breast cancer. Who helps the average person research treatment methods that work? We sure didn't get all the help we needed from her doctors. There is such a volume of information you are sorting through, along with all the other exhausting aspects of the disease.
Bart Knaggs: I know it. The bottom line is we have to help ourselves. Google for cancer trials, search the web. It may help to parcel out the work, it may feel easier if you get a team to collaborate. If you cast a broad net, you should find a good place to get info and direction.
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Philadelphia, Pa.:
Where can I get support from people who have participated in research themselves? I would like to know what to expect and to know that there's somebody around who can share their experience, strength and hope.
Bart Knaggs: Patient advocacy groups can be found at cancertrialshelp.org, laf.org, and I'd try to connect through your doctor or hospital to people in your community. The cancer survivor community is one that wants to give back - there is a special connection there - access it and it will give you strength and hope - good luck.
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Glastonbury, Conn.:
What is the best way to discuss participation in cancer research with my father's oncologist? In the past, the doctor has seemed insulted when I simply ask questions. I'm afraid I'll get cut off and be kept out of the loop if I suggest looking into something more cutting edge.
Bart Knaggs: I've been there. First, get a critical mass of info around the options you are interested in to make sure they are legitimate. And make good faith to give the guy more than one chance to answer your questions. But, these guys can be short and patronizing - even disrespectful at times. Hey, it's too important to you and your dad to not get the service you need. Give the guy a straight talking to. With Lance and with my brother, there were two facilities and two doctors that we left - for this very reason. This is your dad's life, not your doctor's ego. If you like the facility, talk to the hospital administration about your expectations, if there is no support, go somewhere else. It is the doctor's ethical responsibility to provide the best potential outcome to you/your dad. That may mean going to someone different. Don't be afraid of offending him, get the answers you need. Be smart, be effective, be unrelenting.
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Saratoga Springs, N.Y.:
I have to thank you for your role in saving Lance's life, Bart; you are a true friend in every sense of the word ... which made possible a lot of things, one of them that wonderful book, "It's Not About the Bike", which I read while I was being treated for breast cancer this summer, and which was an enormous source of strength for me. I am sorry to hear about your brother, but take heart, I have a friend who was diagnosed with AML in 1989, did a BMT at Fred Hutchins in Seattle and has lived very happily ever after. He is healthier than most people I know. No question for you, just want to express my appreciation.
Bart Knaggs: Thanks. I only did what I could - Lance, his doctors, his nurses, they all did it. Keep spreading the word, and helping the cause. Thanks for the support of my bro, he's my hero, and he's not done fighting. He's got a great team, a huge capacity to endure, and a big future.
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San Antonio, Texas:
I am a cancer clinical trials nurse and am very interested in this discussion. I lead a group of volunteers known as the San Antonio Clinical Trials Task Force and our mission is to educate the public about clinical trials.
Thank you.
Bart Knaggs: Please keep getting the word out and dispelling the myths. You nurses are vital to helping patients feel confident in takign contorl of treatments and being in charge - ask any cancer patient who there nurse was, and watch them glow as they reflect. Thanks, thanks, thanks. Keep it up.
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Newport News, Va.:
It sounds as if your brother is getting the best of care at MD Anderson and as one of the premier cancer treatment centers in the country he probably is. He is also no doubt well insured to have access to this care. Do you have any insight on the numbers of uninsured in this country who cannot even think of getting this type of care? It is refreshing you advocate for clinical trials as this is one of the best ways for an uninsured person to obtain care. What about organizations that assist patients with the information overload that comes with a cancer diagnosis? Before I became active in patient advocacy I would not have had a clue where to turn or who to call. There are many wonderful organizations in this country that help patients with the most basic of issues. American Cancer Society, CancerCare, Komen Foundation, etc. I consider myself fortunate to work in this arena with the Patient Advocate Foundation. However, on your tours are you able to give info to people on where to turn for help?
Bart Knaggs: If you are lucky like me and Daivd, you knew a couple of doctors that you could talk to. Or now, I know a fe researchers, but that is rare. On the tour of hope, we kept is simple, go to tourofhope.org to start. After that, try to make a personal connection with someone that knows their way around...
Insurance, man, treatment is so expensive. I don't know how to address this other than making sure we all make this disease a national priority - in your hometown, in washington, everywhere.
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Bethesda, Md.:
Now that the Tour of Hope as a ride across the country has concluded, what can be done to keep the awareness regarding the benefits of cancer clinical trials at a high level?
Bart Knaggs: Do it again. And again. we want to keep finding people that are average cyclist and send them for a week of agony across the US. Because it will catalyze people to pay attention and get activated. Nothing gets attention at the high level like lots of individuals. We've got 33,000 people signing the cancer promise, and 17,000 people donating money. We are building an Army against cancer. People will pay attention to that.
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Bart Knaggs: I wish I could continue answering more questions today - but I'm not the expert on most of this anyway. I'm just one person, like many out there, that has received the frantic phone call from a loved one. And, once you have, you can't look back. We all have to embrace this responsibility into our lives and find a way to contribute. Don't be overwhelmed by the complexity, or the pain and emotion of this cause. Just bite off a little piece and go to work - talk to friends, do a fun run, write an editorial. Sign the cancer promise. Go support team in training with the Leukemia Society. Come to Austin and do the Ride for the Roses. Learn enough to make the case - more lives get saved, and more breakthrough treatments depend on all of us to advance clinical trials. We just have to pull treatments through the system and take control of treatments to seek out the best care we can. Today, you have to travel to centers of excellence - we need to bring excellence to all communities. And raise the standard of care. I've had a lot of great experiences, the best in my life have been helping my friends and family to fight this disease, and then going out and doing something crazy like riding a bike across the US to spread the word. I feel lucky to be able to help, and a no more qualified than anyone else to get out and beat the drum - but just very glad to have someone listen, and hopefully make an impact on treatment beliefs, and patient advocacy. Thanks for the questions. Get involved, and thank all those out there on the frontline of cancer care - researchers, docs, nurses, admin, advocates - everyone. Thank you. BBK
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Moderator:
Our thanks to Bart Knaggs, the Coalition of National Cancer Cooperative Groups, Inc., and all who participated.
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