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Father and Son Battling Different Blood Cancers

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Published on January 28, 2020

Key Takeaways

  • Family members can have different types of blood cancers that require different types of treatment.
  • Personal empowerment and support are important for maintaining vitality.
  • Having something you love and look forward to helps you stay positive.

Chronic lymphocytic leukemia patient advocate Abram Rosenthal talks about having cancer in several generations of his family including his mother and father, his son who was diagnosed with chronic myeloid leukemia and Abram himself with CLL. Watch as he shares his journey, and describes the different treatments used, clinical trial participation, and the importance of personal empowerment and support.

This town meeting is sponsored by Pharmacyclics LLC and Janssen Biotech, Inc. It is produced by Patient Power in partnership with The CLL Global Research Foundation, The US Oncology Network, Compass Oncology, Willamette Valley Cancer Institute and Research Center, and The Leukemia & Lymphoma Society (LLS).

 

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Partners

CLL Global Research Foundation Compass Oncology The US Oncology Network Willamette Valley Cancer Institute and Research Center

Transcript | Father and Son Battling Different Blood Cancers

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.

Andrew Schorr:       

Andrew Schorr talking about when blood cancers run in a family. Well, Abram Rosenthal knows about it. You’ve been living with CLL, but one of your children even way before—it’s a grown child—diagnosed with CML, chronic myeloid leukemia.

Abram Rosenthal:   

Correct.

Andrew Schorr:       

So, when you developed CLL, you said, “Oh, my God, what’s going on in our family with these blood cancers?” You must have been—both of you must have been—surprised to say the least?

Abram Rosenthal:   

Somewhat surprised, but not completely. I’m no stranger to cancers in my family. My mother died of cancer—it metastasized—a lung/breast cancer. My father died. Well, he got to be 94, but he had beaten down a bladder cancer and a kidney cancer. But my son was about 33 when he got diagnosed with his CML. And at that point, he was basically self-injecting alfa interferon to try to hold his white blood cell counts down and fighting it really spiritually and emotionally with a lot of energy. He was not going to get beaten by it. But very fortunately, STI-571 was in the works at that point at OSU.

Andrew Schorr:       

Out of Portland, out of this city.

Abram Rosenthal:   

Isn’t that amazing?

Andrew Schorr:       

Where we’re doing this interview. 

Abram Rosenthal:   

He wasn’t here though at that time. He was in North Carolina, and I was up in Maine where we lived at that time, and so I was very concerned about him. We were really worried what was going to happen with him, and we were going through bone marrow donor searches to see if I could be compatible. His two stepbrothers weren’t compatible at all nor was his mother, but…

Andrew Schorr:       

…but the news in CML earlier was oral therapies developed that could knock the disease back to even undetectable levels. How’s your son doing?

Abram Rosenthal:   

He is now off of what became called imatinib (Gleevec), and he is now completely cancer-free. He’s been off it for about three, four years now. 

Andrew Schorr:       

Now let’s jump to you. 

Abram Rosenthal:   

Yeah. 

Andrew Schorr:       

Chronic lymphocytic leukemia, CLL.

Abram Rosenthal:   

Right. 

Andrew Schorr:       

And now we’re in the age of these oral medicines.

Abram Rosenthal:   

Yeah.

Andrew Schorr:       

Okay. So, do you take heart from what the journey has been for him and CML as far as new medicines and getting a really good place in for your CLL?

Abram Rosenthal:   

Well, that was my hope and my wish that I could possibly be so lucky, be so fortunate. I happen to have the unmutated form. I had started with a hematologist here in Portland, but on your website, I started seeing a lot of Dr. Sharman at the ASCO conferences and internationally talking about it and I thought, “He’s in Eugene.” And I decided to confer with him for a second opinion on my situation, as I was beginning to feel that it was really moving through me rather quickly. I could feel my physical strength and energy dropping faster and faster.

Andrew Schorr:       

And we should say that you are 75 and pretty damn… 

Abram Rosenthal:   

…74. 

Andrew Schorr:       

Seventy-four and pretty damn fit. So, what treatment are you having now, or have you had? 

Abram Rosenthal:   

I’m on the UNITY Trial.

Andrew Schorr:       

A clinical trial.

Abram Rosenthal:   

With rituximab (Rituxan) and umbralisib, which it was still TG-1202 that Dr. Sharman had when I asked him the question, “Is there anything new coming down the pike?” And his eyes kind of lit up and said, “Yeah, actually, there is.”

Andrew Schorr:       

How are you doing?

Abram Rosenthal:   

I’m doing well. It’s been about two-and-a-half years. I’m down to maybe about 1 percent in the real deep blood analysis.

Andrew Schorr:       

Of your CLL?

Abram Rosenthal:   

Of my CLL. It’s still in my system and it’s been just decreasing. It went down from you know 70, 80 percent. 

Andrew Schorr:       

So, do you take a great deal of hope that your journey will be like your son’s—so where he’s getting to a point where he’s having no therapy, and his CML has been knocked way the hell down?

Abram Rosenthal:   

Yeah. 

Andrew Schorr:       

That that can be you and CLL?

Abram Rosenthal:   

I hope so and I hope that’s so for everybody who possibly comes into the stream of this disease at this point. It’s remarkable. I feel extremely fortunate to have been diagnosed in this particular moment in time because when I read on you know some of the Internet support groups—the ACOR communications online—I see what a lot of people are going through and how long they’ve been struggling with this and the kind of dance they’re doing with the bear as some of the people call it, and I feel really fortunate to have my strength, my vitality restored.

Andrew Schorr:       

And a good provider? 

Abram Rosenthal:   

And an amazingly good provider and though I’m on a clinical trial for which people like you are thanking us, it’s really been a blessing for me because—for one thing—I probably never could have afforded this, and I feel like a lot of other people who are here at this gathering today. I’m getting the most amazing treatment from my clinical nurse, from Jeanne Schaefer who was the first clinical nurse I had and she passed off to Nichole Fisher at Willamette Valley Cancer Institute, and Dr. Sharman—who’s just he’s just all there.

Andrew Schorr:       

Well, first of all, from the CLL community, I want to thank you for being in a trial and I’m delighted it’s working out for you, and I’m also so delighted your son is doing well and that now you’re doing well and hopefully as we study and have treatments—experimental or proved—for these blood cancers, we can just knock them to hell and back, right? 

Abram Rosenthal:   

Yes, indeed. And I think the one thing that I wanted to say was just that I feel like one of the issues that came up today was about our own personal empowerment and I feel like there are a lot of ways we can do that and that is with support, finding the support we need, advocating for ourselves, learning what we can—that is definitely empowering—but also, for me, it’s been to just stay determined, to maintain as much of my own personal vitality as I can, exercising when I don’t feel like it—it always brings me up, I have a good day—eating well, and I don't know what I’d do without my music too. It’s huge having something you love.

Andrew Schorr:       

Right, something you have a passion for.

Abram Rosenthal:   

Yeah. 

Andrew Schorr:       

So, Abram, all the best to you and we met a couple of years ago when we did an earlier event in Portland, and we’re in Portland, Oregon now meeting again. It’s great to see you doing so well.

Abram Rosenthal:   

Thank you, thank you. Thank you for inviting me to talk about it. 

Andrew Schorr:       

Oh, sure.

Abram Rosenthal:   

I appreciate it.

Andrew Schorr:       

Sure. Andrew Schorr with Abram Rosenthal—the story of blood cancers in his family—but fortunately both these gentlemen are doing well. Remember, knowledge can be the best medicine of all.

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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