Take Control of Your CLL - 2 | Transcript | Chronic Lymphocytic Leukemia | Patient Power


Take Control of Your CLL

Andrew Schorr:  

We're doing recipes and we invite people to send in their recipes, Patient-Powered Recipes, and we share those. We’re also doing programs on meditation and mindfulness.

Esther Schorr:                     

Yoga.

Andrew Schorr:  

Raquel Forsgren does that. Cathy Skinner does a program on exercise—“It's not what you can't do; it’s what you can do.” And then the whole communication process that Jeff was just talking about sharing all of this with your healthcare team so that it's this 360-degree support for you: exercise, diet, mindfulness, mental health, the right medication, awareness of clinical trials, are there new supplements that could be helpful, or could it be harmful?

Esther Schorr:     

I'm going to put in a plug, too, that other than the medication side of things, the treatment side, everything you just mentioned is stuff that care partners and loved ones who are part of that circle of trying to support a patient, all of that—yoga, meditation, counseling, good diet, getting sleep—all of those things I think we need to think about as well to keep ourselves centered and able to be supportive. So we have a Care Partner Center…

Andrew Schorr:  

…and a Living Well Center. Tell us about that.

Esther Schorr:     

Well, and actually Patient Power is in the midst of a complete redo of our website, which will come in the springtime sometime, early summer. And ahead of that, we've taken all of this content that we were just talking about—diet, exercise, meditation, all the things that apply across all conditions and that also apply to care partners—into a center called Living Well. And so if you're looking for that kind of guidance, a quick way to get to that is to just go to our site and look for Living Well. It's there, and so we've kind of collected all of that in one place.

Andrew Schorr:  

Right. And somebody just wrote in about…“reeky.” Is that how you say it?

Esther Schorr:                     

Reiki…Reiki? Sorry.

Andrew Schorr:  

Yeah. But anyway, we do have a massage therapist. I think it’s Steven Mc—is it Michael McDonald?  Stephen McDonald?

Esther Schorr:                     

Michael McDonald sings.

Andrew Schorr:  

Yeah. Well, maybe yeah. He gave…

Jeff Folloder:                       

…he was part of the Doobie Brothers.

Andrew Schorr:  

But we're talking about oncology massage. We’ve certainly talked about acupuncture, so all of that we're amassing in this Living Well Center, and we welcome your suggestions. Someone just wrote in also about thanking me for kind of defining palliative in a broader way, because that's what it's become in recent years. So hopefully, with the medicines like you and I know about, Jeff and Esther, for CLL or what I've been getting for myelofibrosis, or even people now with stage IV lung cancer living longer and now all of us trying to live better. So these other things come into play. It's not so acute.

Now, on the flip side, we are covering some acute conditions and one of them is acute myeloid leukemia. And we have a webinar coming up, I think on the 22nd, but Theresa will put up the link. If you or a loved one are dealing with acute myeloid leukemia, you know it's, as we describe, a five-alarm fire. But what's so critical now with several new medicines that have come out for different subtypes of that is that you get the right testing so you get the right treatment and it can make all the difference in extending you or loved one’s life.

Esther Schorr:     

And that's a quicker decision timeline for people, so you really want to be educated fast about it.

Andrew Schorr:  

Yeah. The timeline is shorter, but if you can come out the other side, then all of this stuff – diet exercise, everything else we've mentioned—it all comes into play.

Esther Schorr:                     

Of course.

Andrew Schorr:  

Because now maybe you're living and hopefully you've beaten the cancer, but if you haven't beaten it, you’ve beaten it back and you can go on with your life. Jeff, I want to just thank you for all you do for people generally living with cancer because there you are in Houston as an ongoing volunteer and then online, specifically with the CLL or chronic lymphocytic leukemia, almost 5,000 people and what you do there. Thank you, and when are you going to have treatment again? When does that start?

Jeff Folloder:       

It's a big, giant question mark. I am back in that wonderful bucket we call “watch and wait.” The first time around, watch and weight scared the bejeepers out of me. This time, it's not quite that big a deal. My doctors are telling me that yes, I'm relapsed, but no, it's not time. And so I get up in the morning and go knock out 10K. Sometimes I have the bacon…

Esther Schorr:                     

…keep walking.

Jeff Folloder:       

Absolutely. And sometimes I have the bacon cheeseburger, but not as often as I used to.

Andrew Schorr:  

And speed walking. Well, just a word is I'm doing well with the IVIG once a month.

Jeff Folloder:                       

Excellent.

Andrew Schorr:  

I think I mentioned last time, Esther and I went to New Zealand. Hello, Kiwi friends and also our Aussie friends. We visit Melbourne, Australia. And no colds no pneumonia, so maybe this stuff works. And then with the myelofibrosis I'm very grateful for now, I think it's seven years I've been taking this medicine, ruxolitinib or Jakafi, and it's been keeping it in check, a genetic inhibitor.

Jeff Folloder:       

Andrew, I've got a question from the CLL folks on Facebook. We've been tossing around the term IVIG throughout this video, and you said it a lot.

Andrew Schorr:  

Immunoglobulin.

Jeff Folloder:       

What is it? What does IVIG do for you?

Esther Schorr:                     

Great question.

Andrew Schorr:  

Thank you. So, what happens is your IGs can become low from the treatment you've had or your blood, and so this is sort of your natural infection-fighting components of your blood. And so there's a blood product that can be made from other people's blood that can be given intravenously to boost some of your IGs. I don't remember whether it’s IGA, or there are a few that…

Esther Schorr:                     

…there's a couple of different IGs, right? Yeah.

Andrew Schorr:  

But it boosts it. And at least for me, where we're at risk with leukemia of getting and dying of an infection, this is preventive medicine. So…

Jeff Folloder:                       

…outstanding.

Esther Schorr:     

And in fact, Andrew would not have gone with me to New Zealand on order of his doctor unless he was doing IVIG monthly, because the risk of being in a tin can in the air at 30,000 feet with people sneezing and coughing and doing all that, this is extra preventative. And so I think he thinks it's worth it; I sure do.

Jeff Folloder:                       

I think you both chose wisely.

Andrew Schorr:  

Lots of people are watching. I don't mean to make this too long, but Joey Rhoden, he said do I think that Jakafi is better than peginterferom alfa-2a (Pegasys).

Esther Schorr:                     

Whoah.

Andrew Schorr:  

A couple of brief comments: These medicines are different. Pegasys is an interferon, a pegylated interferon, a longer-active interferon that is used to basically control polycythemia vera in some people. Jakafi – or ruxolitinib is the generic name—is a inhibitor of one of the genes that drives the myelofibrosis and sometimes in some people polycythemia vera, another one of these MPNs, and it can kinda tamp it down, as it has for me. So it's different. And so that's to be discussed with your MPN specialist, Joey.

Esther Schorr:                     

Absolutely.

Andrew Schorr:  

Whether I need an interferon sometime, would that come into play, we’d have to see. But right now I'm on this pill. One last thing before we go, very much this year we're going to be discussing, in the US, drug costs. Okay? It's a big public debate. The medicine that I receive as an oral pill is $14,000 a month. Medicare pays for the bulk of it, but I have to pay $708 a month, and in month one of every year like $2,300, because I work and there are no foundations that come into play. Should we have that cost or should insurance cover more of it. If you have commercial insurance, what about your situation?

Esther Schorr:     

And there are some differences between some of the things that are oral and things that are infused and the costs.

Andrew Schorr:  

Yeah. This deal costs like $10,000 a month for the IVIG. Medicare in the US covers all of it. Great, but this is still expensive stuff. Should it all cost that much? And then lastly, for our friends outside the US, access to any of these medicines. Right? Because the government may say, “Oh, well, we're not gonna do that. We're not going to pay for that,” when maybe there's all sorts of medical evidence that could make a huge difference for you.

Esther Schorr:     

And there are cost factors in those countries, as well. Is there any existing drug that's worked fine for a long time? They may question why would you move to a more expensive medicine.

Andrew Schorr:  

Right.

Esther Schorr:     

So there are a lot of issues that people are struggling with, governments as well as individuals and medical professionals.

Andrew Schorr:  

In fairness, newer is not always better, okay? The breakthrough medicine is sometimes a breakthrough, and sometimes is just a slight variation on what already exists.

Esther Schorr:     

And that's why I stick with you after 30-some years. I'm not looking for a new model.

Andrew Schorr:  

Oh, I'm not a breakthrough?

Esther Schorr:                     

No. Sorry.

Andrew Schorr:  

Oh, okay. Jeff’s a breakthrough, but he's married. Okay. All right, Jeff. Thank you. We wish you well. Thank you for connecting with us.

Jeff Folloder:                       

You’re welcome.

Andrew Schorr:  

I'm going to try just, friends, because I'm a former TV producer, Esther’s a producer, to play one little outro video. We’ll see if we do it. I don't know all the buttons here. Jeff, I'm going to let you go.

Esther Schorr:                     

Thanks, Jeff.

Jeff Folloder:                       

Okay. Thanks again. Thank you.

Andrew Schorr:  

Thank you so much. He's the greatest. And we're going to see if we can play this last little clip as we say goodbye. We’ll fine-tune our approach. But isn't this cool? And it really doesn't have any real cost to do it, and we hope it's helpful.

Esther Schorr:                     

And remember, knowledge can be the best medicine of all.

Andrew Schorr:  

Andrew and Esther. Right. Bye-bye, everyone.

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 3, 2019