Laurie Adami survived follicular non-Hodgkin Lymphoma | Yescarta CAR-T Therapy | Bexxar | Gazvya

DESCRIPTION

Laurie Adami seemed to have it all.  She was the president of her company, at age 40, she had just had a son and still found time to lead an active lifestyle.  However, in 2003, her health took a turn for the worse.  She felt a lump in her abdomen, experienced frequent, lengthy sinus infections and chronic fatigue.  All this led to a diagnosis of Stage IV Follicular Non-Hodgkin Lymphoma.  After six unsuccessful treatment regimens, she achieved complete remission on the seventh try, completing a battle that ran twelve years.

When Laurie initially brought her symptoms to the attention of her family doctor, they were dismissed as, at worst, a hernia, and exhaustion due to her demanding schedule; but Laurie insisted there was nothing ordinary about her symptoms and changed doctors.

She saw a hernia specialist who ordered a CT scan, which revealed a mass the size of a small watermelon on her abdomen.  After a biopsy, Laurie learned she had Stage IV Follicular Non-Hodgkin Lymphoma.  At that time, she had no idea of the difficulty and length of the journey awaiting her.

The first of six treatments that failed to overcome her diagnosis was in 2006 and called R-CHOP.  It was a mix of Rituxan plus Cytoxan, Adriamyacin and Prednisone.

Next in 2008 was a clinical trial of Rituxan, along with an HDAC inhibitor.

In 2010, Laurie tried Bendamustin, a medication popular in Eastern Europe.

When that didn’t work, later in the year, she went with Bexxar Radioimmunotherapy.

Of the first six regimens, Laurie had the most success with a pi3 kinase inhibitor called Zydelig.  For five and a half years ending in 2016, it shrunk the tumor without eliminating it.

The tumor returned and for six months ending in September 2017, she tried infusions of Gazvya.

On July 16, 2018, her tumor was still around, but Laurie qualified for a Phase II clinical trial of Yescarta CAR-T therapy.  Some 29 days later, her lymphoma specialist informed her she was in full remission.

Laurie Adami has resumed an active lifestyle, and does plenty of traveling, most of it to public speaking engagements, as she serves as an advocate for the Leukemia & Lymphoma Society.

Additional Resources:

Support Group:

The Leukemia & Lymphoma Society  https://www.lls.org

TRANSCRIPT

Bruce Morton: Greetings and welcome to the @CancerInterviews podcast.  Thanks for joining us.  I’m your host, Bruce Morton.  Our guest on this episode is a warrior.  Laurie Adami of Los Angeles, California endured all manner of treatments for twelve years, and has survived Stage IV follicular non-Hodgkin lymphoma.  She continues to carry on the fight against this disease as an advocate on the personal and the legislative level.  Now it’s time to hear her inspiring story, and Laurie, welcome to Cancer Interviews.

Laurie Adami: Thank you, Bruce.

BM: First off, Laurie, we want to learn a bit about you and your life away from cancer.  If you would, tell us a bit about your life away from cancer.  Where are you from, what have you done for work, and what do you like t do in your leisure time?

LA: Sure.  I was born in the Northeast and grew up in Connecticut, New Jersey and Upstate New York.  I was working in Boston at a bank when I was 24 years old and I got recruited to join a small software startup in Los Angeles.  In 1984, I packed up my crummy little car and I drove west and ended up working for 24 years for this company that ended up going public.  I ended up becoming resident of the company in 1998 when the founder decided it was time for him to move on to other businesses.  I did a lot of traveling, over three million miles on American Airlines, and in 1998, the same year as I became president of the firm, I was married and two years later in 2000, I had my son at age of 40.

BM: Your battle with cancer was a lengthy one.  At what point did you notice something with your health wasn’t quite right?

LA: In around 2003, I started to get frequent sinus infections.  At this point, I was still working, still running my company, still traveling, my little boy was three.  The sinus infections would last for months.  I also noticed I had a lymph node in my neck, which was dismissed by the doctors because of my sinus infections.  I also had a very dry eye because I was a contact lens wearer, and the doctor said that was because of my hormones.  And the last thing I noticed was that I had a lump in my abdomen.  The doctors said it was a hernia, and not to worry about it.  Everything was roundly dismissed for close to three years.  The worst thing was extreme fatigue I had and doctors missed that, too, because of my heavy workload.

BM: We’re confident you will be able to learn some tips and tools to help you through your personal cancer journey, but first we’d like to invite you to lease give us a ‘like,’ leave a comment or review below and share this story with your friends.  Kindly click on the bell icon, so you’ll be notified when we release our next cancer interview.  We also want to remind you we are not distributors of medical advice.  If you seek medical advice, please contact a license healthcare professional.

So, Laurie, your concerns have been dismissed on a variety of levels, and yet there was a chain of events that led to your diagnosis.  What was it?

LA: I had finally changed the doctors I was seeing and I realized I needed to good diagnostician who would listen to me.  The wife of the founder of my company had told me about a new diagnostician that she was seeing, and recommended I get an appointment with this doctor and see if he would figure out what was wrong with me, and that is what happened.  I went in, he listened to all my concerns, acknowledged that what I had been told was a possibility, but said he didn’t guess about stuff like this, and this is why he had CT machines.  He said he would send me to see a hernia specialist who will get you a scan.  I was told I would be in and out in half an hour.  They also biopsied some goiters on my thyroid.  Now I was worried I might have thyroid cancer.  They imaged me first, then they did two biopsies of my thyroid.  I left the office pretty upset, not understanding, but fearful that for the last three years I had had some sort of cancer.

BM: So, Soon after that you got your diagnosis?

LA: Yes.  The hernia doctor’s office called me to schedule me for an appointment the following week.  I was supposed to be leaving for Chicago and New York the following Monday, so I wanted to postpone, but I got a call from the doctor’s internist who said the doctor needed to see me today.  That was Good Friday 2006.  I was now 46.  My son was in kindergarten.  I went alone because nobody told me to bring anyone with me.  I went into the doctor’s office on Good Friday 2006.  That’s when he told me I have a tumor inside my abdomen that was the size of small watermelon and I had spots in one of my lungs.  He speculated that I may have two different cancers.  He just dropped this bomb.  Nobody ever expects to have that bomb dropped on their head, and you don’t have a clue what to do.

BM: And you knew that you had a mammoth task ahead of you as you knew you would be undergoing treatment for this, but what you couldn’t know at that time that you were about to embark on a journey that would cover twelve years.  That’s twelve years and seven different types of treatment.  If you would, Laurie, go over the first six, and we will get to the seventh regimen a little later.

LA: So, when I was diagnosed, in 2006, there was one kind of treatment for the kind of disease I had, which was very bulky Stage IV follicular non-Hodgkin lymphoma.  That was an antibody called R CHOP.  It included ritoxin, and three different agents, onconvine, adriamycin and cytoxin, plus prednisone.  There were some trials at the time, but it was too early to know if they would be effective. So, the advice from all four lymphoma specialists I saw was that I needed to R CHOP.  I did six cycles every three weeks.  At the end of the third cycle, they checked to see if the chemo and the ritoxin were working, which it was, so we went on and did the remaining three cycles, a total of six.  Then I was imaged and I was told I was in complete remission.  So, I went merrily back to work and I resumed my crazy life; only now, when I traveled, my oncologist wanted me to wear a mask because he said I was still immune-suppressed and to wipe down everything in my immediate vicinity on the plane.  Just four months later, they did another scan and I was at that point, I was doing maintenance rituxin, and they saw some data that said it might keep me in remission.  Sadly that wasn’t the case.  When I went in for the scan, my lungs were lighting up, not because of lung cancer, but because of the lymphoma, which had metastasized.  So, I watched the disease for about a year while I researched options.  What various doctors around the country wanted to do was an autologous stem cell transplant, which involved an even harder chemo than R CHOP.  We had already harvested my stem cells.  The hope was they would get me back in remission.  I started to research this procedure and the results were horrible.  Over half the patients relapsed within a year. At that point, I tried my second trial, of rituxin and HDAC inhibitor, Vorinostat.  I took this pill every day and I was officially going in once a week for study visits.  They imaged me and my disease had started to stabilize, which made the care team think the medication was working.  The disease had started to shrink, but unfortunately in ten months, they imaged me and the disease was growing again. At that point I was thrown out of the trial because my disease had grown enough that they were no longer willing to have me participate.  Now in late 2009, I was in quest of treatment number three.  At that time there was a new chemo approved called bendamustine.  It had been developed in communist East Germany and was their gold plate chemo treatment.  So, I underwent more cycles of chemotherapy.  I did monthly infusions of rituxin and bendamustine.  It started to shrink the disease, but at the tail end, I still had the disease.  When we were figuring out what we would do next because it was clear my disease was not going into remission, there was another newer treatment on the market that was radioimmunotherapy that had been recently FDA approved.  There were two of them.  One was called bexxar, which had been developed at the University of Michigan.  I had spoken to a bunch of follicular patients that had had bexxar in the original trials and they were all still in remission.  At that point, we decided to do bexxar because m disease wasn’t gong away. So, in December of 2010, I go in and get bexxar, which makes you radioactive for about eight days, so when leaving the doctor’s office, I had to take the service elevator.  I went home, I isolated for eight days, which I thought was all worth it if bexxar did the job.  I felt very confident this was going to be different.  I couldn’t get scanned for four months because I was going to be radioactive.  Anyway, in February 2011, I was reading the paper, put my hand on my neck and felt a whole chain of tumors.  That’s when I knew bexxar had failed me.  My fourth treatment had failed.  The only thing left for me was an allogeneic stem cell transplant, which is where you hopefully have a donor who is a sibling who can be a match because by definition they are going to be a match.  I only had two siblings and neither one of them were a match.  So, I was told I would have to go into the unrelated donor banks.  We started to make those calls, but an allogeneic stem cell transplant is very risky.  You end up with an unrelated donor’s immune system.  Given how heavily treated I was, I was very vulnerable to getting an infection. You could get a staph infection, you could get pneumonia, you could get COVID and your immune system provides no protection, also leaving me vulnerable to graft versus host disease, which can attack your organs.  I was convinced I was going to have to do that, spoke to a friend and she said no.  Then I heard from another friend who was a doctor and had the same diagnosis as me.  She urged me to go to my computer, and that we would both find me a new trial.  We sent emails to eight doctors around the world.  The following day my friend and I had planned on going to a lymphoma research fundraiser.  That morning my phone rang and the caller ID said “UCLA,” which is where I had sent one of the emails.  A doctor, Sven DeVos, said he would be at that same fundraiser later that day and would bring with him the necessary paperwork for a PI3 kinase inhibitor.  I started that regimen in May 2011, in a Phase One study at UCLA and the drug immediately started to shrink my tumors.  Never got rid of my disease.  I took the drug, Zydelig, for five and a half years and it bought me a ton of time.  Meanwhile, in 2012, I went to a fundraiser and saw a film about CAR-T therapy.  It put a patient in complete remission.  I was seeing Dr. DeVos that weekend and asked him about CAR-T, in which about a million of my T-cells would be removed.  They take the cells to a lab where they let the cells grow for about three weeks and they combine the cells with a virus.  They put a target on those cells so when they infuse the cells into your body, they are like heat seeking missiles, they run around and destroy your cancer.  To me, this approach had to be smarter.  But after the five and a half years, in 2016, the tumors returned to my neck, but it took five and a half years for the cancer to outsmart the kinase inhibitor.  I fought back with an infusion called Gazyva, once a month for nine months, ending in September 2017, and immediately I felt the tumors shrink, but the tumors came back.  However, I got great news from Dr. DeVos.  He said a clinic trial for CAR-T had opened, and he could get me the first slot in the trial at UCLA.  This came in 2018, twelve years after my diagnosis.

BM: Now we move on to Phase Seven of your treatment now, but it sounds like the seventh time was the charm. 

LA: I was in treatment virtually the entire time for twelve years.  I was in remission, was going to host a big family party, but I had gigantic tumors protruding from my face.  If I hadn’t been able to go on CAR-T, I would have been in a very bad way.  My only alternative would have been an allogeneic transplant and my chances of surviving would have been one in three.

BM: But you did get to a stagein which you were declared NED, yes?

LA: Yes, so July of 2018, I got my CAR-T cells back.  They were harvested in June.  On July 15, I checked into the Ronald Reagan Hospital at UCLA and the next day, I received my CAR-T cells back, a billion of them. They were infused and just two days later, my kidney enzymes were normal.  On the 29^th day after getting the cells back, I checked into Ronald Reagan Hospital again for another scan, and Dr. DeVos told me I was in complete remission.  I had never heard those words.  That is my story.

BM: And a tremendous story it is.  Laurie, we are going to wrap up now and we will conclude with the following question.  If you encountered someone diagnosed with non-Hodgkin lymphoma who had experienced multiple failed treatment regimens, and been hit with setbacks emotional, mental and physical, if you had one piece of advice for them, what would it be?

LA: For me, going through this was a real rollercoaster.  I would get encouraged during treatment, the treatment would fail.  I had depression during my time, I took medication to help me with that. I also had a big motivator in my little boy.  He was in kindergarten when I was diagnosed and I just couldn’t fathom the idea of my husband saying to him, “Mom has died.”  So, I had this big motivator.  Try to find something that motivates you that gives you purpose to keep fighting. 

BM: Wow.  A compelling story and compelling advice as well.  Laurie Adami, Los Angeles, California, thank you so much for being with us on Cancer Interviews.  This is a story I have no doubt will resonate with lots of people.

LA: Thanks for giving me the opportunity to share my story. Take care.  Enjoy your summer.

BM: And we want to remind you as we wrap up, that if you are on a cancer journey, you are not alone.  There are people out there like Laurie Adami, who provide information and inspiration to ease the cancer journey.  So, until next time, we’ll see you on down the road.

Additional Resources:

Support Group: Leukemia & Lymphoma Society  https://www.lls.org

SHOW NOTES

TITLE: Laurie Adami, Survivor of Non-Hodgkin Lymphoma – Los Angeles, California, USA

Laurie Adami traveled a rocky path but managed to survive follicular non-Hodgkin lymphoma.  Diagnosed in 2006, she went through seven treatment regimens covering twelve years before she was told she was in complete remission.  What lifted her over the top was a clinical trial of Yescarta CAR-T therapy.

Additional Resources:

Support Group:

The Leukemia & Lymphoma Society: https://www.lls.org

Time Stamps:

03:02 Laurie began to experience a variety of symptoms demanding medical attention.

05:16 Changed doctors, which led to her diagnosis.

10:18 Reaction to diagnosis.

11:48 Laurie describes her six unsuccessful treatment regimens.

33:17 Her seventh treatment regimen.

37:02 Learned she was in complete remission.

39:45 Advice to others who undergo a regimen that is unsuccessful.

KEYWORDS (tags):

follicular non-hodgkin lymphoma

cytoxin

adriamyacin

prednisone

rituxin

bendamustine

bexxar radioimmunotherapy

yescarta CAR-T therapy

idelalasib

zydelig

gazyva

autologous stem cell transplant

allogeneic stem cell transplant

graft versus host disease