Lisa Minkove: Giving Back Gives Me Purpose

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Topics include: Patient Stories

When it comes to her health, Lisa Minkove of Issaquah, WA has not had an easy road. Lisa has battled several cancers, including chronic lymphocytic leukemia (CLL). Lisa shares her story—from diagnosis through treatment—and discusses how her experiences with cancer led her to start a support group to help others.

[Editor’s note: Patient advocate Lisa Minkove passed away on April 10, 2018. Lisa’s tireless dedication to the CLL community and her positive outlook inspired many. If you would like to make a donation in her name, Lisa’s family asks that you please donate to The Leukemia & Lymphoma Society (LLS).]

This program was sponsored by The Patient Empowerment Network, which received educational grants from AbbVie, Inc., Genentech and Gilead Sciences, 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. 

Lisa Minkove:

My name is Lisa Minkove. I’m from Issaquah, Washington. I was diagnosed with chronic leukemia in 2010.

I was first diagnosed with thyroid cancer in 2005 and had a partial thyroidectomy. And I recovered from that, but I never quite felt well. And I went through several years of not feeling well and wasn’t sure what was going on. And my endocrinologist was keeping pretty close tabs on me.

And after about, about six months before I was diagnosed with my CLL, I started getting, I started having problems with pain everywhere in my lymphatic system. I was very sore. But the key was my armpit. I had soreness in my right armpit. And I have a family history of leukemias and lymphomas.

And so, I told my endocrinologist that I thought maybe I had, you know, lymphoma. I mean, it, it, it could be possible

And not only did we find that I had some type of lymphoma, I also had a large mass on my right kidney. And it ended up that I also had renal cell carcinoma.

So after that diagnosis, because I knew something was wrong, I remember the doctor in the ER telling me that, you know, we don’t like to diagnose with [sounds like] people like this in the ER. And I said, I can understand. And I’m looking at my CT scan, and I, I’m seeing this mass.

And I went to my local oncologist, and he looked at my CT scan and my records.

And he decided to start out with giving me two treatments of bendamustine (Treanda) and rituximab (Rituxan), to see if the mass on my kidney shrunk. Well, it didn’t shrink. So we knew it was a primary cancer.

And within 18 months, I was ready for treatment, six months of chemo. In between that time, I left the oncologist’s office that I had been at, because I, I knew that okay, I am becoming too complex for myself, and I think I need an expert doctor.

So I decided that I was very fortunate to live in Seattle, that we had experts in Seattle. And I, I found my doctor, Dr. David Maloney at the Seattle Cancer Care Alliance. We, we have a great relationship. And he started me on treatment, and I did six months of chemotherapy with bendamustine and Rituxan again.

And unfortunately, I was refractory to treatment, and I had a relapse right away, a very serious relapse. And I knew that I had to choose a treatment the second time. Now, when you have a secondary cancer, which I have, well the, the kidney cancer, for there being is a treatment that can compromise your immune system more.

And we didn’t want me to end up with renal cell carcinoma, a recurrence. So we took the, the low road, and we did bendamustine and Rituxan again. And I knew that the new drug, ibrutinib (Imbruvica), was going to be out soon and approved.

I went right into relapse, and I’ve been on ibrutinib now for six weeks. And I’m just amazed at how quickly I, I have, I’m recovering. I’m not recovering yet, but my bone marrow is still struggling. I had 85 percent infiltration of CLL cells in my bone marrow.

And but, I can say I’m very fortunate that I, I, I didn’t have a Richter’s transformation going on, and I didn’t have MDS. That would have been a whole different program. My, my doctor told me I was making him work too hard, and he’s right, but we’re doing good. We’re doing good, and I’m pleased.

Well, with my background in working with patients, and I needed something at home, because I’m home so much. And there, there wasn’t anything, any group that met my needs. And I wanted a group just for women, where women could talk about not only their CLL but other women’s issues.

Because we have more than CLL and, you know, the different, different comorbidities interfere with our treatments. And so I, we, we basically discuss a lot of women’s health issues on my Facebook page, and it’s a great group.

To be able to give back gives me purpose in life. And it gives me something to do, the things that I would be doing out in the world if I wasn’t, if I didn’t have all these health issues, and if I didn’t have CLL. And because my immune system is so compromised, I am at home quite a bit by myself. And so, helping other women helps me, and I enjoy it.

One thing I don’t do is I don’t look back or go back. I start like, as soon as I finished, you know, as soon as I started on my new treatment, I get right back into my, my diet and exercise program, and it’s like starting out new.

And I don’t know what, what the future holds for me. I have no idea. I put all those problems up on a shelf and just deal on a daily basis with taking care of myself. And helping other women establish their support networks, and finding the help that they need and, and I have patients from all over the world.

And I have a lovely daughter who is my caretaker and support network, who’s very busy herself, who helps me a lot. And I’m very grateful for my daughter.

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 April 10, 2018