2016 Patient Café: Our Advice to Other Patients

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Topics include: Patient Stories

I’ve been diagnosed with cancer.  What do I do now?  In this Patient Café segment, Patient Power Host, Carol Preston, leads this positive discussion on advice to other cancer patients.  chronic lymphocytic leukemia (CLL) patients Elaine, Derek, Jay and Lisa share several methods for coping with your diagnosis and disease.  From staying informed to self-efficacy, escaping stress and knowing when to ask for help, these patient advocates offer hard-won insights.

Sponsored by the Patient Empowerment Network through educational grants from AbbVie and Genentech Inc.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Carol Preston:

What I would like to do, and, Elaine, I’m going to start with you, is to ask each of you relatively quickly, we’ve talked about so many wonderful issues, what advice you would have for a patient. It doesn’t even matter if it’s a newly diagnosed patient or someone who has been struggling because of this issue of oh, my gosh, I have cancer, and what do I do now. So I’m going to start with Elaine, and then, Derrick, I’m going to ask you. Advice for other patients, Jay, and then wrap up with Lisa. Elaine?

Elaine:  

You know, I can’t give advice to anybody, because everybody is different, and everything works differently for people. So I can only say what my advice to myself. And if somebody else finds help in that, that’s great. 

It’s been really important for me to find out everything I can learn about CLL. I sometimes spend five hours a day on the web, sometimes one hour a day. Rarely does a day go by that I don’t do some research. I’m always up on the drugs, the clinical trials, the results of clinical trials. I just read a result of the venetoclax (Venclexta) trial that I’m about to enter, because I’m in the third arm. And at the recent Cancer Association meeting, there was a report about the first two arms. So I just think that, for me, knowing as much as I can is really important. 

And keeping my body as healthy as possible, in order to participate in this Venetoclax trial, I am about to have an entire battery of tests, including an echo stress test.

And I looked at this full battery and thought, okay; they want to see if I’m healthy enough to take a drug that could kill me. And that’s the reality. And so we need to—I need to live with that reality and know that I am doing everything I can to keep my body as healthy as possible. I’ve been drinking a brew of teas for the last 15 years that I make with organic dandelion greens and burdock root suggested by my Chinese doctor about 15 years ago. And I think that it’s the reason that I’m the only person in the idelalisib (Zydelig) trial who didn’t get liver damage, because dandelion and burdock root cleanse the liver and kidneys.

Carol Preston:   

But, again, we do want every patient—every patient wants to check with his or her medical provider.

Elaine:  

Absolutely. I have to tell you that when I told them that I make this brew, they said, “Oh, you should stop.” They just say stop everything, because they don’t know. And I said, “Well, if I continue to drink my tea, will you kick me out of the trial?” And the nurse said, “No, because it hasn’t been tested and, therefore, there’s nothing about it.” So I said, “I’m going to have to make my own decisions.” And so I did. And I didn’t have liver damage.

Carol Preston:   

So far, so good.

Elaine:  

And so far, so good.

Carol Preston:   

Any final words?

Elaine:  

I have two wonderful sons who are both very left brain who were with me for every ofatumumab (Arzerra) infusion.

I wanted my very technical children there during the infusion. I don’t count on them for the touchy feely spiritual stuff. So I think it’s important to have both kinds of people in your life, if possible, so that the concrete technical, stuff can be taken care of, and the spiritual aspect can also be addressed.

Carol Preston:   

Derrick, how about you? Again, not necessarily advice as in patients do this, but for patients who are not quite as Zen as you, what would you suggest? What’s your advice?

Derrick:                 

I’m going to be really quick. To me, there are three things. The first thing is to go through this, it’s all about us.

And I guess there’s nobody more important to us. And you have to fight for yourself. Self-advocacy I cannot stress enough. Like you said, second and third opinions, don’t be scared of that. Everybody has got so much advice for you. And you have to remember that many people are—people fixate on what we’ve seen over the years. And I don’t know what it’s like everywhere else, but sometimes, we go to the doctor’s office, and you get your 10 or 15 and another 20 or 30 patients that day. Don’t be afraid to fight for yourself. Question things if you’re not sure. Just don’t accept everything you’re told without comment. 

The second thing is find an escape. Find somewhere where you can go to relax and turn away from the stress. Turn away from, pardon my language, more of the crap and all of the stuff you’re going through. 

You’ll find maybe it’s reading, maybe it’s walking. I found music. And I’d never, ever played music in my life before this. So I discovered this. So that’s where I can turn and where I can go to when things are getting bad in my mind. And the other thing is don’t deny yourself some of the pleasures in life. I mean, I remember somebody saying you’ve got to cut sugar out of your diet. I love sugar. I love candies. I love cake. And for me, never to have that again because maybe that will give me another six months or nine months of life, I don’t know. I don’t go crazy. But if I want a candy bar occasionally, I’ll go out and buy one.

If I want a piece of cake, I’ll eat a piece of cake, and I’ll enjoy it. And I don’t think it makes that much of a difference. So just keep that in mind. I remember, the very first time I played music publically, we recorded a CD, and we were selling the CDs, I raised the money for it, I stood up in front of the audience, most of whom I knew, and I said, “To me, this is not a sentence of death.”

“For me, this is a sentence of life.”

Carol Preston:   

Well, I gave a talk a few months ago, and I likened the CLL portion to snowflakes, which may sound kind of corny. But you remember as kids, you see snow falling, and it all looks the same. And you hold out your hand, and you learn very quickly, and also in basic science that every snowflake is different. So what’s good for Elaine, what’s good for Derrick, each person, it’s that aura of positivity. Jay, what can you offer our viewers?

Jay:         

I really like what Elaine said about information. I like the tagline of Patient Power. Sometimes, information is the best medicine.

By being as informed as possible, I’ve been able to—that’s another way for me to maintain my hope because when we look at what’s going on with Imbruvica now and venetoclax and more to come, I really think that, in 10 years, they’ll probably unravel the mystery. And I may well be around to benefit from advanced solutions. So I’m not obsessive about it, but I think probably every day, I read something. Whether it’s an email from the ACOR list that is relevant to me, or I’ll check the clinical trials, or I’ll look at Dr. Sharman’s blog, or what have you.

And just by staying relatively current with the information, I feel, to go along with what Derrick said so well, that I will be able, when the time comes, to advocate for myself. In the medical landscape here, my provincial government has approved ibrutinib (Imbruvica). But I may well have had too good a response to my FR to get that as my next treatment that they will likely want me to do chemo again. So I spend a certain amount of time constructing my arguments with my oncologist as to why he needs to recommend Imbruvica rather than another round of chemo. But because I’m informed, I may have a chance of doing that successfully. 

The other thing that’s probably the most important for me is that I try not to battle cancer on a daily basis. I try to live my life. And I don’t really keep track of it. But I try to not be aware of the cancer. I just try to get on with my day. And when my blood tests come around, I try to surprise myself. I know that they’re every three months. And I don’t schedule them. I just decide one morning, I’ll go down. And I usually do it on a busy day so that I can see my results online early that evening. And if I’ve been busy, I haven’t had the chance to fret much during the day. Then, I take the information and process it.

And I try to put them, put it out of my head and move on with my life rather than worrying too much about a condition.

The final thing that I would say to people is that something someone said to me many years ago, which was be where your hands are. And if I look down at my hands, I can notice that they’re not in a hospital, and they’re not in a doctor’s office. And so they can just get about the business of doing something that I will enjoy right now. And as long as I can try to stay in the day, there’s no battle today to fight. There’s just to do good things and try to be a reasonable human being and move forward that way. Because I think if you’re waiting for the sword to fall, you’re always looking up at the sword. And I’d rather be looking ahead at something I want to focus on something good.

Because I thought five years ago, I was sort of thinking maybe if I live four years. Well, now, I’m kind of thinking, I’m probably going to go 10 from diagnosis at least, maybe a lot more. So if I put all of my attention on a four-year deadline, then, I would have been a lot more miserable as I approached that.

Carol Preston:   

Be where your hands are. I like that. Lisa, how about you? And you talk to many patients every single day online.

Lisa:       

Well, be your own advocate. And also, don’t be afraid to ask for help. You need help. If you’re having a difficult time, and you’re struggling, there [are] your social workers at your cancer center. And the psychiatrists, your doctors, they will help you get through those tough times. 

And you will be stronger for it.

Carol Preston:   

And I like—go ahead.

Lisa:       

Social networking and staying connected to a community is really important. You don’t want to isolate yourself. And Patient Power also is a great community. And you can get your information from our experts through Patient Power, which is a great resource. It’s one of my favorite resources that they make available for us. And I think it’s wonderful.

Carol Preston:   

And just one quick comment about keeping ourselves informed, which is so very important, I also like to caution patients not to overwhelm and drowned in information. The web is a blessing and a curse, because you find yourself in a state of information and not really understanding how to sort it through. So maybe start with one website. I know I take a look at ACOR every day.

I look at Patient Power. And then, there are some others, obviously. On Facebook, there are some CLL support groups as well. But start slow. It’s just like physicians will say with medicine, in terms of titration, start low and go slow. You will get the information you need. I want to thank all of you for a most wonderful not only enlightening but very positive discussion, Jay, Elaine, Derrick and Lisa. And in many ways, you have already beaten your cancer whatever the future because of how you live. And, Lisa, to your point, because of how you advocate not just for yourselves. 

You all are giving of yourselves to others whether you’re speaking to groups, creating music, online teaching. And that’s what is such an important message for all of us to take away.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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Page last updated on June 12, 2019