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Slide #1
MODERATOR: I'm Carolyn Bell and I'm Director of Patient Services at the Lymphoma Research Foundation and I'm really pleased to welcome you to the How To panel. I just want to let you know that idea for this session was really generated by the feedback and the suggestions from the people who attended the Educational Forum last year. And so I'd really love it if you could fill out your evaluations of the program this year and either drop it off at our table before you leave or mail it into us so that we can develop sessions that best meet your needs in the future as well.
The panelists today are three dynamic individuals who are cancer survivors and who are highly active in the cancer community in the areas of education, support and advocacy. They spent a great deal of time working on this presentation today and I'm very grateful for that.
Slide #2
First, I'd like to introduce Jerry Crum. Jerry is a Non-Hodgkin's lymphoma survivor who has a long history of advocacy work in lymphoma and other health related causes. In March of 2001, he testified before the House of Representatives in support of increased federal funding of lymphoma research and participated in the National Cancer Institute's Leukemia/Lymphoma and Myeloma Progress Review Group meeting.
Mr. Crum also worked with advocacy groups and Nevada's Congressional delegation for the passage of lymphoma specific report language and House and Senate Appropriations Subcommittees in 1998. He is also an active volunteer with the Carson Tahoe Hospital Cancer Resource Center in Carson City, Nevada.
Next I'd like to introduce Virginia Huber. She is a native New Yorker who lives in Seattle. Three years ago she founded a lymphoma networking group in Seattle after a second bout with diffused large B cell Non-Hodgkin's lymphoma. Virginia brings to this networking group the creativity and organizational skills she has gained from experience and studies in psychology, art and journalism.
And next I'd like to introduce Patrick Williams. He is a California native who has lived in Carson City, Nevada, since 1993. She was a natural resource manager with the U.S. Bureau of Indian Affairs in Arizona and Nevada. When diagnosed with prostate cancer, Mr. Williams found little information about his disease and very few local resources and support for cancer patients. In 2000, the Carson Tahoe Hospital Cancer Resource Center opened and Mr. Williams soon became a volunteer. He has since become a staff member at the Center providing much needed education and support to newly diagnosed cancer patients throughout Nevada and adjacent areas of California.
Mr. Williams volunteers for the American Cancer Society, directing their man-to-man prostate cancer program in northern Nevada and administering their local road-to-recovery cancer patient transportation program. He also volunteers for the Carson Advocates for Cancer Care, a local charity that provides financial assistance for cancer related medical bills for patients from northern Nevada and adjacent areas of California.
So I'd like to thank our panelists for being here.
Slide #3
JERRY CRUM: In thinking about my presentation, I couldn't separate self-advocacy, my topic, from survivorship. To me they're like the two strands of the DNA molecule. They're very much linked. When we talk about self-advocacy we're talking about you. You looking out for your own best interests.
Slide #4
If you go away from my talk today with just one concept, let it be the first one there. It's the cornerstone for everything else and I had to discover this. I have to relearn it again and again. What on the surface appears to be a simple concept can be, in fact, complicated and emotional. You must accept that your spouse or your caregiver or your friend do not care more about you than you do. Your oncologist does not care more about you than you do. The President of the United States, believe it or not, does not care more about you than you do.
As survivors, we've pondered questions like why me and what did I do. We live in a country that's strives for fairness. We acclimate to this concept and to a degree we expect it. There is nothing fair about cancer -- absolutely nothing. It does one thing. It grows until it's killed or controlled or it kills its host. Live your life as if it depended on it.
Slide #5
Next slide. Let's acknowledge something. Advocating for yourself is hard. I sometimes have to ask for help, maybe because I don't understand something, sometimes because emotions are disabling me. The men in the audience, the data that we accumulate at the Carson Tahoe Cancer Resource Center show that women are much better about seeking help than men are. It's true: Men don't like to ask for directions.
However, in the case of lymphoma this can kill you. Ask for help when you need it.
Slide #6
People sometimes ask me how I deal with lymphoma and when I think about the question, I realize that my survival -- my ability to advocate for myself involved these areas. And I want to go into each concept.
Slide #7
Next slide, please. I want to give you a sense of attitude with a real-life story. A year ago, my dentist gave me some bad news. I needed a crown. We discussed the procedure and the root canal involved in the whole thing. Anyone here who has had root canal, you can signify with a groan. (AUDIENCE GROANS) It's good to be among friends. The dentist told me that I could go a couple of directions regarding the actual crown. He told me that he could make the crown using some material that would last perhaps two years. This crown would be comparatively inexpensive and his thought was that given my health problems and my prognosis, this might be the way to go. [LAUGHTER]
Or he said, I could also get a gold crown that would last forever. And I looked him in the eye and I said, "Give me the gold crown. I'm planning on needing it." That's what I mean about attitude.
Attitude involves risk assessment and the use of your own parameters. How strong are you? How much risk are you willing to take? Your attitude can change depending on where you are with your lymphoma. Is this your first intervention? Or is it your third? In order to advocate for yourself, you must be very clear about your goal. And let us not forget that doing nothing at all is a valid option sometimes. If at some point this is your decision, advocate for it.
Slide #8
Next slide, please. In my opinion, gaining as much information as you can about your lymphoma is absolutely critical to being an effective advocate for yourself. I feel like I'm preaching to the choir here today. You cannot make critical decisions about where you're going unless you understand what's going on and what's involved with your options.
First of all, know what kind of lymphoma you have. And this may be an obvious thing, but maybe it's not. And I want to tell you again two real-life stories.
I worked for four years at a U.S. Senator's office. It was one morning an older gentleman came in, obviously very ill, seeking help. He had cancer. He had had several kinds of treatment and he was looking for something else. He didn't know what he was looking for, but really what he was looking for was a clinical trial. And we told him we thought we might be able to help him and asked him what kind of cancer he had. And he didn't know.
A few weeks ago, someone I work with, someone Pat and I work with, who has cancer came out of remission and she said, "Jerry, what are we going to do?" I said, "Well, you know we can look for some options for you. And what do you have?" And she said, "Non-Hodgkin's lymphoma." I said, "I know, but what kind?" And she didn't know.
So it happens.
Determine what kinds of interventions are available for your lymphoma and the stage that it's in. In other words, figure out where you're going, why you're going that way, and be able to explain your thinking. You need this if you're going to effectively advocate for yourself because, in all probability, not everyone you're working with is going to agree with your decisions. If they did, there wouldn't be any need for self-advocacy.
Gathering this information and creating a menu of options for yourself are part of what Pat Williams will be talking about today.
Slide #9
Next slide, please. In all likelihood you'll end up with a set of options that are not black and white, rather you're going to be working with shades of gray. In other words, there may not a one-best approach for you. So you have to decide what you want to do because no one else can. And the best advice I've gotten in this area is from my own primary care physician and he said, "Decide what you're going to do and don't look back." That is, if things don't work out as well as you would have hoped, don't go into "what-if." If you've done an effective job for yourself, you made the best decision that you could at that time, don't go negative. It's unproductive.
Slide #10
Next slide. Cancer knowledge is expanding rapidly as we all know. It can be a challenge for many of us to keep up with it. It has its own language. Lymphoma is further complicated because it's not a single disease, but a family of diseases. The best advice I can give you is to seek good resources - which you're doing already - to help you understand this area. Lymphoma Research Foundation is an outstanding source of information. Their people are great to work with.
Also, the National Cancer Institute (1-800-4-CANCER). The number 4-CANCER. You'll connect with a real person. I've never had a bad experience with them. They're terrific.
Slide #11
Next slide, please. Remember we're talking about you advocating for you. And depending on your situation, there may come a time when you need to ask for help in areas where -- that we normally take for granted.
Slide #12
Next slide. These are just some of the people I asked for help from. You'll notice how much attention I'm getting in this picture. But actually there were some terrific people. This guy right here, Kevin, month after month he would show up at my door at 4 in the morning to take me to the airport. I had to fly from Reno back to Bethesda, Maryland, for the clinical trial I took part in. He was absolutely great.
Part of the trial I was on involved chemotherapy and in the last round of chemo I was really beat, so was my wife. It had been a long haul. And these -- it was right around Thanksgiving and these folks brought over their leftovers from their dinners and it was the best meal I've ever had. It was absolutely wonderful.
Slide #13
Next slide, please. Anyone who has been living with lymphoma for a while understands the role of luck in their survival. What you'll find if you become an advocate for yourself is that to an extent you can create your own luck. If you're keeping up with lymphoma and cancer research, you're talking to people and you may see some opportunities. I found out about the clinical trial I was part of while attending an advocacy meeting in Washington, DC. If you're not actively advocating for yourself, you may miss an opportunity that so-called "luck" brings to you.
Slide #14
Self-advocacy in part involves you supporting yourself, looking out for oneself. I found that balance is an important concept in this area. Sometimes I have to take a rest from lymphoma, a mental break, more than a physical one.
My favorite way to do this is to go fly fishing. When I'm fly fishing somehow I'm transported to another place and in this place, there is no cancer. There is just peace.
This is yours-truly in the picture. Right down here I actually have hold of a golden trout. Somebody, I think it was Pat Williams pointed out to me that if I caught larger fish, you guys might be able to see it. This is the kind of support I get from Pat Williams.
But other examples of something like this -- it may be golf or it might be photography, maybe riding or reading a book. I'm told that getting your nails done can even do it. And I went out in my garage and I looked at my nails and I couldn't figure out what you do with them that would be so relaxing. [LAUGHTER] I believe the lady that told me. Or it might be some involvement with your church.
For me a passion outside my immediate challenge has been critical to my survival and my mental health.
Slide #15
Okay, this is another real-life concrete example of what I've just been talking about. I was always able to go fly fishing, at least once between rounds of chemotherapy. But during the -- right after the last round of chemo, I had diarrhea. On this particular day, I was in the river when I felt the sudden urge and rather desperately, I scrambled out onto the river bank. And when I saw this humble structure, it looked like the gates of heaven to me.
While I was occupying this haven, I discovered that it's impossible to think about cancer and spiders at the same time.
Slide #16
Next slide. I'd be remiss if I didn't address the need for continued advocacy and the involvement of lymphoma survivors in our political system.
Slide #17
Next slide. I sometimes become jealous when I see a breakthrough for breast cancer or prostate cancer. These two cancers have early detection of some kind. Significant gains have been made with these cancers treatment-wise. And there is a reason for this. Those impacted by these cancers demanded it. Remember no one cares more about your survival -- and I'll add to that -- the survival of all lymphoma survivors than you do.
Melanie Smith is going to be giving a presentation focusing on advocacy and I would really encourage you to attend that.
Slide #18
In this area, if I've learned one thing about the political arena, it's this. Silence is approval. You'll see it expressed two ways. An issue will surface and there is no pushback, the assumption is status quo, go forward.
The other way you'll see it is if an issue is not on the political radar, status quo is the assumption. So you need to ask yourself, are you satisfied with the way things are now with lymphoma and if you're not, get involved in the solution. No one cares more than you do.
Slide #19
Next slide. I want to thank you for your attention. I want to introduce Pat Williams. This is an actual picture of Pat at the Carson Tahoe Cancer Resource Center going over his notes and preparing himself for this presentation.
He's a prostate cancer survivor. He's exceptional in his ability to counsel cancer survivors and he's my friend. Pat Williams. [APPLAUSE]
Slide #1
PATRICK WILLIAMS: Good afternoon. I'm Pat Williams. I'm a prostate cancer survivor. I used to have another life and now my life has, in part, prostate cancer. And a big chunk of it is at the Carson Tahoe Cancer Resource Center. But I have other lives too. I have grandchildren. I have sons. I have a dear friend and companion. And I like to build furniture.
Slide #2
Next slide, please. We're going to talk about the community resource center and how a community resource center can benefit you.
Slide #3
Next slide, please. As a model, I'm going to use the Carson Tahoe Cancer Resource Center. It was established, oh, about three years ago. This particular resource center is sort of self-sustaining. It lives on the donations of the people who use it.
Slide #4
Next slide, please. If you would like to have a resource center in your community, it takes a lot of love, a lot of dedication and it takes a vision. In this case, we had visionary, Ann Prophet. She is the director of the resource center and she also developed a mission -- you need a mission, what you're going to do.
Slide #5
Next slide, please. At the Carson Tahoe Cancer Resource Center, we want to provide intellectual and emotional support to the newly diagnosed cancer patient. Intellectual support, that's knowledge about -- about your particular cancer, knowledge about the treatments that are available. Emotional support will allow you to begin your survivorship. With that knowledge and that survivorship, you now can become involved with the decision-making needed for you to begin your journey into treatment and into survivorship.
Slide #6
Next slide, please. Our cancer resource center started back in 1992 when Ann Prophet was diagnosed with breast cancer. She looked around the community of Carson City and Menden (these are two small communities south of Reno) and she found that there was nothing. There were no support groups. There was very little in the public library, very little in the medical library at the hospital.
What she did have were friends -- people who had been down that road, but very little else. Right now the population of that area of the Carson Tahoe Hospital service area is about 250,000. About that time, it was 125,000. So fairly good size.
In 1995, Ann went to work for the hospital in the lab and she also started an informal resource center. It was herself. She gathered some material. She would talk to the nurses up on the ward. They would go to cancer patients to see if the patient was interested and they'd send for Ann. So her vision was becoming real here -- she was starting to realize it.
At the same time, she was working within the system to create something more formal. In the year 2000, on Ground Hog Day, the door of the cancer resource center opened in a place called the Adams House. You saw a picture of that earlier. It's a nice mission style house, very comfortable, very warm, very inviting to the cancer patients.
In that first year, we saw several hundred cancer patients. The next year, 2001, we saw over 1100 cancer patients. And we're running even more in the year 2002. It is becoming accepted by the community, by the patients and by the medical community. They're sending patients to us.
We've got a lending library in our resource center of over 500 books. We've got all the NCI material on specific cancers and treatments and side effects. We use all the material from the American Cancer Society. We have American Cancer Society programs such as "Look Good, Feel Better," "Man-to-Man," "Road to Recovery."
We've set up some programs of our own. We have a lodging program that has been funded by a grant from Komen and also another grant from the hospital auxiliary where we provide lodging for those out-of-town patients, the rural patients who come in for radiation or chemo or whatever. We work closely with a small charity, the Carson Advocates. They have a gas voucher program where we can assist patients who are strapped for money to get over the hill if they have to go to Sacramento or San Francisco for treatment, especially those who have children with cancer.
We've got a newsletter that we put out now. It's written by and for cancer survivors. It's got a -- we've got a mailing list of about 500 now and that's growing every day.
And then in 2001, Ann Prophets cancer center was given the 2001 Partner Award Certificate from the National Cancer Institute for its outstanding service to the under-served populations of the Carson City and Lake Tahoe areas.
Slide #7
You know when you were diagnosed with lymphoma, that very moment, the doctor called you instead of the nurse. You experienced a traumatic event, one that left you with a temporary hearing loss. Try to remember the rest of that conversation with the doctor. And you probably became a bit befuddled. You thought maybe you were going to die and you thought maybe I'd die sooner rather than later. That's exactly the sort of patient that we're looking for at the cancer resource center. That would be the time for that doctor to send you over to see your resource center.
Here you would find a staff made up of cancer survivors -- people who have been down that road. They would have offered you a safe port where you can come to get educated about your disease and about its treatments. You'll see cancer survivors who are cheerful, funny, alive and going about their lives. The cancer resource center will give you the emotional and intellectual tools you need to begin to evolve from a cancer patient to a cancer survivor. The resource center is also a safe place where you can come to meet people who will understand that not all is well with you.
Slide #8
Cancer resource center can be expanded beyond just a library. It can include free literature. It can include booklets and pamphlets that address specific cancers and their treatments. They can include information about clinical trials, nutrition, support, self-help, video and tapes, a meeting place, a place to volunteer -- any number of things that will help the cancer patient along the way. And I would hope in this day and age, it would include computers on the Internet so that you can help patients get on the Internet and find information or find information about clinical trials.
Slide #9
Next. What an age we live in? All that incredible amount of information at our fingertips. Think how fast things have changed in the past ten years. The Internet provides you with almost instant contact with excellent information on your cancer, treatments, treatment centers and clinical trials.
And I'm sure that most of you have found out that -- if you've been on the Internet -- you can also get misinformation and you can run into snake oil salesmen. Beware! There is information on the Internet that is a waste of your time. There is stuff out there that can hurt you. There are chat rooms out there that are excellent -- provide you excellent support. There are other chat rooms out there that can lead you astray.
You can ask your doctor -- some of them can recommend certain Internet links or we have a list up here of some Internet links, and I'm sure a lot of you have found other stuff out there that's incredibly valuable.
Slide #10
Next, please. When you were diagnosed with lymphoma, you entered a new world. To be your own advocate, you have to find the information you need to get through this new world. That you get more education about your disease, about treatments, about how much time is involved, about new definitions of old words like tired. What does tired mean? About new words like chemobrain or metastases. You get a better understanding of what's going on with you.
Ask questions. A doctor or technician may use terms that you're not familiar with. It's okay to ask, "Huh, what did you say?" Make them define them. I've found it very useful to write down my questions before I went into see the doctor. Then if I could remember to take the list, I could remember to ask the questions. Take notes. Take a translator with you. Take your wife, take your husband, take your dear friend -- another pair of ears to hear the doctor because I could always count on getting something wrong.
Slide #11
Next, please. Just remember the newly diagnosed patient, you -- you experienced a traumatic event. When I was told that I had prostate cancer, it was like I'd just been clobbered over the forehead with a 2 x 4 that said "mortality." It was my first real confrontation with my mortality. And I sure didn't remember much of what the doctor said after that.
But that was the patient -- I was the patient at that time that our resource center wants. It gave me a chance, it would have given me chance to see people who had been on part of my journey and to see them in a whole different light. They had their act together. They were joking, laughing. They were living.
Slide #12
When I was first diagnosed, cancer was all my life. It has now evolved where it's just part of my life. When the newly diagnosed patient comes to the cancer resource center, my approach is to get them involved in three steps.
Slide #13
Next, please. I sit down with the cancer patient and I ask a few questions. What's your name? How can I get a hold of you? What's your address, phone number? What kind of cancer do you have? How old are you? Who is your doctor? What treatments do you think you might be getting? How are you set financially? Do you have insurance? Are you going to apply for Medicaid?
Then when I have this information, I can determine what information would be best suited for them. Some patients may even need professional counseling to deal with emotional issues. I can offer them a support group when the time is right for them. I can offer them to see if they would like to have someone contact them who has the same cancer, who has maybe -- is going to face the same treatments, who's already been on a very similar journey -- to see if they could, would want to interact with them.
I'll see if they want to get our newsletter. Get them involved.
Slide #14
Next slide, please. Every cancer patient who comes in, I want them to go away with a plan -- with something in their hand, and with a plan. These plans are very simple. It's usually as simple as promising to come back to the center or to follow-up with their doctor, or to come to the support group, or to read the brochures, or to help with financial issues. They will be given something to do so they can begin the journey of managing their own disease and their own treatments.
Slide #15
Next, please. Some people are done with the resource center after one visit. Others come a few more time. Others begin a relationship with guides and the center that lasts through their treatments and beyond. Some may come to a support group several times and be done. Others will find value long after their treatments are completed. It's okay to graduate from the cancer center and it's okay to graduate from the support groups. It's okay to stick around.
Some people don't need support groups. Some people have a very strong support system with their own families and friends. Others have a real need for it. And I'm very pleased that when they are able to take advantage of it.
Slide #16
Next, please. We are frequently asked by people in other communities how to start a cancer resource center. In talking with our founder, Ann Prophet, there are some keys to successfully establishing a cancer resource center. The contact with the medical community is essential. For Ann, initial contact was through our local hospital.
You have to find a suitable home for the resource center and location is important, too. In our case, the hospital houses the resource center and we're very close to the oncologists' offices, as well as the urologists and the surgeons.
And you need to develop the resources for the center. These sources are literature, computers with Internet access and volunteers. Volunteers are crucial, and you want a well-trained, sensitive intelligent volunteer staff. It's very helpful if they're cancer survivors as well.
Offering the resource center, the physical center, for support group meetings has been very successful in our case. It gives those support groups a place to call home. Finally, in helping people with cancer, they will have needs outside our capabilities. It's very important to develop contacts with other health and social service organizations. It enables these organizations to help these patients in your community.
Slide #17
Next slide, please. Many people tell us that the cancer resource center has been a godsend and a blessing. And it has allowed them to give back to their community. If you'd like advice on setting up a cancer resource center in your community, please feel free to call me. I have brochures here and cards, and there is a toll-free number up there.
Did everyone get the handout of this presentation? Is there one here?
MODERATOR: There are some on the side right there.
PATRICK WILLIAMS: I'll hand these out during the next presentation. In the meantime, I'd like to introduce Virginia Huber from Seattle.
Slide #18 WINDOWS she doesn't have any slides so please keep this one up though out her presentation.
VIRGINIA HUBER: I did not wrestle with technology so I'm going to speak from here. You have my handout. So for those of you who like at something or visual learners, you have this and I will refer to it as I talk a bit here.
I was first diagnosed in 1996. I did various things to support myself, etc., but in '98 I had a relapse and during the year of treatment again, it occurred to me, having come to one of these events, that there was something really neat about connecting with people who had lymphoma. I live in Seattle which is cancer city and there are billions of resources, in some way, but there is nothing for lymphoma people -- people with lymphoma.
And while that's not essential, you can get quite good networking and support for other people who have any kind of cancer. There was something that was right for me at that choice point in my life. I was a counselor, but I didn't want to be counseling other people in a practice. What I wanted to do is do something that involved this -- supporting other people who are dealing with what I was dealing with.
And so basically I went to -- I did some of the things that Ann, the woman, he was talking about in Nevada did which is contact people I knew, oncologists, oncology social workers, etc. Gathered a group together basically of people who knew other people -- finally got about 14 people -- caregivers and patients. It was really important to include caregivers in it, we thought. That was always our key. To be available, to have a network -- to find out what a networking -- what people would want in a networking group.
Ongoing education, ongoing support, what would that look like? What kind of ways to connect and communicate? What were people looking for? And we had a focus group and we gathered some of those people who came to an "Ask the Doctor," which was one of the Lymphoma Research Foundation presentations in Seattle that I was involved with. So we brought together some people from there and some other people I mentioned. And the 14 people met, said, "Yeah, they liked the idea of meeting regularly -- figuring out what they wanted to do." So we found through Cancer Lifeline which is a local independent organization that they would house our group. And they did actually get some support from Genentech for the group.
It's turned out to be in the three years we've had it extremely successful -- and that's both the good news and the bad news. Because a lot of people have lymphoma, but it is an incredibly -- we get 30-40 people coming each month -- caregivers and patients and we both have people who have been coming for about three years. We're going to have our third anniversary at the end of this -- in December.
We also have new people coming each time too and so we're always having to juggle how are we going to meet the needs of newly diagnosed people as well as people who have been dealing with it for some time. But somehow it works. We have three people including myself who are facilitators and I am the coordinator. I did put on here, on this -- like Pat I'm very willing to help with encouragement, inspiration and hard core assistance if anybody has the idea that they want to try to start something. If you have the inclination, it isn't as hard as that to do. Also, in some places where -- like way out in way-out Wyoming or somewhere maybe not so far out as that. Somewhere even around here you might -- in California -- places in California where there aren't a lot of resources. You might be able to set something like this up. And I am available to assist so my information is on this handout.
One of the things I wanted to say by way of how inspiring it has been to create this group and to be a part of it is that we do bring in oncologists and other speakers from our local area and also we do have patient and caregiver-generated things. We also every other week, every other month it meets monthly -- we do a breakout group where the caregivers have a chance to talk with each other and then there usually are two patient survivor groups.
One of the neat things is that we experience a lot of support in many, many ways. There have been losses so that this year there have been maybe three funerals, but we've also had a wedding and a baby. So life has been -- it's become a micro -- macrocosm of life and it continues to be of great value to me -- just feeling inspired by having created that.
The other piece that I find really helpful is that people send me first diagnosed lymphoma patients and then I usually let them know about the group. But sometimes people aren't interested in a group. And so what I try to do is just be their phone connection.
And that brings me to the other two areas that I wanted to mention here. And that's -- I gave some selected examples of other support programs that I knew about and maybe in a few minutes some of you may be able to say about -- talk about other groups you know about or other connections around that you know about.
LRF sponsors a group in Los Angeles that's lymphoma specific. I discovered that in Cleveland there are two. One that is down here and also that big organizations -- bigger, ones that have quite a few locations like the Wellness community and the Leukemia and Lymphoma Society. That information of how to reach them is on here. And there are some lymphoma specific resources through those organizations, but a lot of regular cancer support.
There are many ways to be supported and to support others as you likely are aware dealing with it wherever you are in your process.
I put down some other things here. That are also about one-on-one peer support and I think most people are aware that LRF has the Lymphoma Support Network that combines the Cure for Lymphomas and LRFA's groups -- support networks and it's called Lymphoma Support Network. There are 1600 people now, I've been told that are connecting. And some of you may already be buddies or connecting with other people through that. And that's another really good way to get support and give support to others.
MD Anderson Cancer Center in Houston also has a telephone support line and I have that on this handout. There is Cancer Hope Network and now with Amgen has established the Voices of Experience Network. That's not one that I have -- I have tried or have gone on line about or phones about, but it is also a new available resource, and it's on here.
Then chat groups and list servers. I've listed a bunch of those and the ones that are specific to the many different types of lymphoma that people are dealing with here.
So in order to give you time to ask any of us questions or to let us know resources that you know about, I am going to end here. Just tell you again that we're delighted to be here with you and available for your question and your resources.
Anybody?
Q: I'm kind of new to this lymphoma --
VIRGINIA HUBER: Say it again.
Q: There is a lot of medical terminology that I do not understand. Is there a resource available that can put layman's terms that the doctors use?
JERRY CRUM: I'm trying to remember if Lymphoma Research Foundation's website has a dictionary on it. It's been a while since I've been on there. If they don't, the National Cancer Institutes website certainly does.
Leukemia/Lymphoma -- okay. Yeah, that would be a good one to look at. We ran into the very same thing at resource center in Carson City and my first assignment actually was to come up with a cancer dictionary which we published, what a few months ago. Maybe if you get in touch with Pat or myself, we could get you a copy. It's pretty challenging. It's almost like learning a foreign language at first. But then you'll be surprised. You'll be using terms and talking to researchers and you'll be very eloquent.
VIRGINIA HUBER: And LRF -- or before they were LRF -- LRFA had a glossary. Do you guys still have that material. Carolyn?
CAROLYN: [INAUDIBLE] ... educational publications... with terminology... If you ever have any questions, a term that you're just not sure ..., call ... at the Foundation ...
VIRGINIA HUBER: Good.
[CONVERSATION GOES ON BUT IS NOT MIKED]
Q: [INAUDIBLE]
PATRICK WILLIAMS: Carson Tahoe Hospital Cancer Resource Center. We actually brought some -- you brought some business cards? Yeah, we can give you a business card right here and you can give a call and we'll get one to you.
Q: ... is also I guess part of this panel. There is supposed to be discussion on picking an oncologist. I would imagine most of us have one, but if you decide to change, what to look for?
VIRGINIA HUBER: What to look for or where to go?
Q: Where to go?
VIRGINIA HUBER: Both? I'll address that one first. The what to look for I would think would be quite subjective in a way in that you're going to be needing to decide what isn't working about the one you have or what you are looking for next. What happened -- I can tell you personally for myself is that -- when I relapsed, I was unsure about what I wanted to do next. And I -- the first time I had had lymphoma I had it in my breast. And I thought I had breast cancer. So I had gone to an oncologist that was basically a breast cancer specialist. And then when I got the lymphoma again, I thought -- I thought well, an oncologist just like any other oncologist. But I decided I wanted to go to someone who was a lymphoma specialist. I then started to make calls. First, I did call the LRFA (as it then was) and I did get some suggestions for Seattle.
I actually picked -- I did call several of the people and I picked the one that I have now from that. So that would be my -- do you want to address that?
: I wanted to comment ... [INAUDIBLE] It's ... place to look for to look for an oncologist. See the problem is
VIRGINIA HUBER: Could you use the -- okay.
: We all have different types of lymphoma obviously. And is there a specific specialty for each one of these doctors? This is what she wants to find out. How do you find out who that doctor is? I've had to change twice now because as in the previous session -- you go to a doctor who is a cancer doctor but not necessarily informed on how to treat lymphoma specifically. So you know, where do you go to find someone that has a specialty in your particular lymphoma or lymphoma period.
You just start calling the cancer society or LRF or what do you do? What do you do?
VIRGINIA HUBER: I have some ideas but do you want to --
JERRY CRUM: Dr. Connor was talking in this room an hour ago that even diagnosing the various lymphomas is an incredible challenge. And it cannot be done in Carson City or in Reno. You actually have to go Sacramento or San Francisco to UCSF or Stanford. When you live in that part of Nevada to get a definitive diagnosis of your cancer, so it is a real challenge. Because that's also telling you that the oncologist in northern Nevada may not be that sophisticated in treating the particular lymphoma that you may have.
If you have breast cancer or prostate cancer, there is early detection, I would have no problem recommending to a patient that he or she stay in Carson City for treatment. But lymphoma is a different ball game. There are too many subtleties there. So how do you find an oncologist?
That's a real challenge. There are several ways you can do it. You can do it by word-of-mouth, if you can get a hold of other lymphoma patients. Ask them what their experience has been. If you can find a lymphoma patient who has your particular kind of lymphoma.
If you have a lot of resources, financial resources, maybe you can afford to travel somewhere. If you're in Los Angeles area, you're probably fairly fortunate or if you can get to UCLA or USC. If you're in the Bay Area, you're fairly fortunate, you can get to Stanford or UCSF or UC Davis.
But if you're in rural America, you face a real challenge. And it is a daunting task. It's not a very -- it's not easy. So you can get on the Internet. You can get a hold of the Lymphoma Foundation. Go to the people who are supposedly the experts in those resources.
Q: I just have a comment. We belong to an HMO here in Southern California. My wife was diagnosed with cancer and she was assigned an oncologist. Now we have no idea what this one specializes in, but we like her. She seems to be very knowledgeable and very, very willing to listen and share her feelings and her information. But yet again, we have no idea whether or not she's trained particularly to deal with breast cancer or prostate cancer. But she's simply the one that has been assigned to us. And it is a big HMO. We feel we don't know what to do -- do you ask?
VIRGINIA HUBER: Yes. Would be the simple answer. You know we were talking about being proactive and taking charge and so part of that would be that if you're uncomfortable or wanting to know more, ask them. Ask the actual physician. Also ask the HMO to provide you with the background of the doctor.
Q: We've had the same doctor for several years now and as I said, my wife is very pleased and happy with her. Until I heard these comments here just in the last few minutes, we never wondered whether or not we should be looking for a lymphoma specialist.
VIRGINIA HUBERT: You know what? What I would say to that is you don't necessarily have to find lymphoma specialist. Not everyone needs one or wants one. Many, many, many people do fine with the oncologist that they have and most oncologists actually do -- if they have a question or are working with a protocol that they're not aware of -- they're on tumor boards and they're taking --they're getting consultation from other doctors, other ones who are specialists. So you're probably doing fine.
Q: And again, another comment. You mentioned about several other university-associated cancer centers. If you belong to an HMO and you decide that you want to go to UC Davis or USC, then you're talking about a lot of out-of-pocket expense that your HMO is not going to cover.
VIRGINIA HUBERT: It's true. So a lot of times what the best advocating for yourself can be is to use the resources that you have available in the best possible way. And it sounds like you like the one you have.
She's coming around.
Q: Sometimes when you have a doctor and they're not really a specialist in a particular, you can ask that doctor to recommend someone.
JERRY CRUM: Make a referral.
Q: Oftentimes, if you get a referral from your doctor, your HMO will cover it.
JERRY CRUM: Just in that general area, I don't know of an easy way to address what's being discussed here. I've never found one anyway. The doctors and oncologists that I have found that I like I've found through various networkings and it can start right here. There are some very savvy people at this educational forum. And certainly walk up to them, introduce yourself and talk with them. It's an amazing opportunity that you have -- some of the best in the country are here.
And then, the more you do this, the more you find out about who the better oncologists are around the country and myself and various situations I've been, I've gotten two or three referrals. And sort of created the menu I was talking about in my talk. You know, it's your life. It can get overwhelming. It may be too much. Sometimes it gets to be too much for me and I have to ask for help. And I've been doing this a long time. But you know, get some help with it. Call the Lymphoma Research Foundation or ask a friend to do it or something.
But I don't know a magic button yet. Particularly the issue with the HMO, that may be an issue that needs to be addressed nationally.
PATRICK WILLIAMS: There are also tremendous resources in this room. I mean the experience in this room -- you all who have been on your own journeys have discovered people, have discovered institutions, have discovered treatments that have worked for you. That's -- there is an invaluable resource right here. And if you can network with each other, I think there will be an opportunity in some of these other breakout sessions where you will meet other people with your particular lymphoma. Pick their brains.
Q: Can I ask a question now of anybody around here who lives in the Los Angeles area who has a good lymphoma specialist?
[AUDIENCE RESPONDS WITHOUT MIKE]
JERRY CRUM: Okay, we'll take one more question. Yes.
Q: If I can just make a comment, I'm working with the Lymphoma Research Foundation on chapter development. And one of the greatest ways that you can be an advocate is by becoming a member of a local chapter. Please sign up in the room with the information tables. We are really pursuing a massive expansion of the chapters and it's a great place to share and work with each other. Thank you.
JERRY CRUM: Thank you all very much.
VIRGINIA HUBER: Thank you.
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