Navigating CLL - Albie Suozzi's Journey S7

Navigating CLL - Albie Suozzi's Journey S7 

In this episode of Season seven of Open Forum in The Villages, Florida, host Mike Roth speaks with Albi Swazi about his experience with chronic lymphocytic leukemia (CLL). Albi shares his journey from diagnosis to treatment, discussing the symptoms, treatment plans including the drug Acalabrutinib, and the associated side effects. The episode delves into the role of the CLL Society, detailing how it provides education and support to patients and caregivers. Albi offers practical advice for newly diagnosed patients and emphasizes the importance of proper diet, rest, and mental health. The episode also includes shout-outs to podcast supporters and encourages listener contributions to keep the show thriving.

00:00 Introduction to Open Forum in The Villages
00:25 Interview with Albi Swazi: Living with CLL
00:42 Albi's Diagnosis and Initial Symptoms
02:25 Treatment Journey and Side Effects
06:31 Diet and Lifestyle Changes
08:39 Discovering the CLL Society
16:31 Advice for Newly Diagnosed Patients
18:52 Conclusion and Support Information

 Over the next several weeks, while I'm out of town, I've decided to release some reedited and improved versions of the  most popular shows in the series,  as well as some totally new episodes.  I hope you enjoy them.  I'll be back in mid-November with some new episodes

Transcript

Speaker: 0:25

Welcome to Season seven of Open Forum in The Villages of Florida. In this show, we talk to leaders of clubs and interesting folks who live in and around The Villages. We also talk to people who have information vital to seniors. You will get perspectives of what is happening in The Villages, Florida area. We are a listener supported podcast. There will be shout outs for supporters.

Mike Roth: 0:48

This is Mike Roth on Open Forum in The Villages, Florida. Today we're gonna be talking about chronic lymphocytic leukemia with Albie Suozzi, and the disease has a common name. Albie, why don't you tell our listeners a little bit about CLL as it affected you? What were the first symptoms that you noticed?

Albie Suozzi: 1:10

I didn't have any symptoms of CLL when I was first diagnosed. I was diagnosed in 2008. Come to find out from the doctor that I currently have, when he looked at my medical records, I actually had it in 2006. I had absolutely no symptoms or I was asymptomatic. The only reason I found out was because it was an incidental finding that happened because I had to have a physical and a blood workup, which is typical for work. They found it, at a very low level. when they first found it in 2007, I ignored the PA's request to go to a hematologist. the next year it hadn't progressed and she said, you really need to go. So I went and that's when I found out I had CLL. It was just incidental

Mike Roth: 1:53

How old were you?

Albie Suozzi: 1:54

I was 49 at the time, which was very young for a diagnosis. Normally a diagnosis of CLL will come along when. People are maybe middle to late sixties, early seventies. That's about the most common time for CLL to show up. It's rare, but there are people in their thirties that do get a diagnosis of CLL.

Mike Roth: 2:15

Have they done enough research to know where CLL is a genetic disease that runs in people's families? Or is it caused by environmental factors?

Albie Suozzi: 2:24

it can be both. Some CLL can run in families, There are no risk factors. Like for myself, it didn't run in my family, so there were no risk factors. I wasn't around fertilizers or pesticides, but for veterans, they have found that Agent Orange can cause CLL and those exposed to Agent Orange can get CLL and go through the vet to get help with that. it varies.

Mike Roth: 2:49

But you a vet?

Albie Suozzi: 2:50

Not a vet either.

Mike Roth: 2:51

When did you begin treatments?

Albie Suozzi: 2:53

I began treatments in, June of 2023, so just last year. I was on watch and wait for almost, if you figure 2006 when they, noted, I had CLL, it's been almost 18 years as of today. So 17 years into watch, wait, and I began treatment in June. 2023 with a drug called, Acalabrutinib, which is a tablet I take twice a day. it fights back the CLL and keeps me in clinical remission. But I do have to take this every day

Mike Roth: 3:21

Okay. And are there any, have you experienced any side effects from the drug?

Albie Suozzi: 3:25

I did when I first started, in the first six weeks, I had very intense headaches. They were almost like migraine, so if you have any migraine sufferers, they'll understand what it was like. Coffee helped with that. The caffeine did help with that. After those past, what happened to me was my hemoglobin dropped quite a bit, so I became very anemic. My platelets dropped, so I bruised very easily. And I also became what's called neutropenic, which is where your neutrophils drop and those are your infection fighters. And so they drop very low. I became very fatigued. I'd be up in the morning and I was fine, and just about after lunch I'd be down for a nap for a couple hours, which I'm not a napper. And I broke out in a full body rash, and my liver enzymes took a rise. my doctor decided it was time to take me off the med, at least for a couple of weeks, and then start me up again, I was on a lower dose, half the dose for about a month and a half. everything started to normalize. in September, I started back on the full dose. At that point in time, my liver enzyme had come down to normal. My hemoglobin had started to rise and was back into the normal level. My neutrophils became normal. The only thing that was going on, my platelets are taking its time to come back up into the normal level, but that's not unusual for some people. Clearance of their CLL and. Normal. blood levels can happen within three or four months. Others may take up to a year. So that's not an unusual situation to be in. And the side effects that I did have or experience were very common to a cib. So it wasn't unusual for these types of side effects to happen, but it was good that I had a doctor that understood. understood what he needed to do to allow my body to heal and adapt to the medication.

Mike Roth: 5:15

it had really serious side effects

Albie Suozzi: 5:17

If the Hema Globin had dropped to seven, I would've had to have a blood transfusion. The platelets, you don't want it to drop too low because you could have spontaneous bleeding, you could become very bruising, You could just continuously bleed which is obviously not good. So of course their concern is to make sure that your bone marrow is still functioning and can repair itself and come back to normal.

Mike Roth: 5:39

Did you do anything special to get through these side effects?

Albie Suozzi: 5:43

I took the advice of my doctor, which he said I'm a very active person and I don't necessarily take the time. To give myself a break or take a rest. And so he told me, he said, you've got to not do a lot for the first three or four months. You're gonna understand your body is going through a lot your body of all these CLL cells you have, and that's a lot of work for your body to do, and you're not giving it a chance to do that and take it easy. He said, you've got to do that. So what I had to do was just follow his advice. It killed me to do it. I will be honest with you because again, I'm not the type of person to sit around and do nothing.

Mike Roth: 6:18

you

Albie Suozzi: 6:18

Yes. I worked part-time with the CLL Society, so yes, I was still working. And I was still doing it in between headaches. he was insistent. I take the time to heal and that's exactly what I had to do. once I started to do that, I understood that it was okay to take a nap. It was okay to feel tired. It was okay for some of these side effects too. what they did was they were all transient in the long run. When I look back, they were all transient. Some might have lasted longer than others, but eventually, when my body adjusted to the medication and healed, meaning the CLL cells were mostly eliminated, then I began to feel better and I just had to have the patience to wait it out.

Mike Roth: 6:56

Did you change your diet as you were going through this?

Albie Suozzi: 6:59

I did, and not that I was always a bad eater or that I always went to process foods or went to McDonald's or Burger King. But I kept an eye on what I was eating. I included many more vegetables, many more fruits. I watched my red meat intake. I would still eat red meat and I still do eat red meat, but I make sure it's a lean cut. I make sure that no more than maybe once or twice a week at most, chicken, fish, things like that, that were better. I watched how I actually cooked them. I watched the fat intake. when I say fruits and vegetables, I added many more fresh fruits and vegetables than I had in the past. sometimes I. Would skip a vegetable because I would be the only one in the house who would eat it, for example, broccoli. So I didn't necessarily eat it as much as I should have. But I ended up changing those types of habits where I was worried about making sure I ate what was good for me. once CLL happened, that's when I started to adjust my diet to make sure I was meeting all its nutrient needs

Mike Roth: 7:56

you think adjusting your diet has improved your health physically and mentally?

Albie Suozzi: 8:01

Yes, I do. I really do. And that would be for anybody, even somebody who doesn't have CLL, adjusting their diet to include a multiple of fruits and vegetables, good meat, Your body feels better, you have much more energy. You are sharper in your thinking, and your body can use those nutrients By not eating that way, we skip those types of vitamins and minerals that we truly need because we're not including those in our diet naturally. supplementation isn't always the way to go. There are certain supplements that you do wanna take to make sure you have enough of, for example, vitamin D, and that can be checked by your doctor, to make sure what level they're at. So vitamin D is a very difficult vitamin to get through your diet. Usually that's because we can go out in the sun and we can get our vitamin D that way. But then you take the chance of Skin cancer,

Mike Roth: 8:51

It's a double

Albie Suozzi: 8:52

So including a supplement for that. But you wanna make sure your doctor checks it to make sure you need it. And if you are low, they can give you the proper dose to take so that you can include that in your diet as well. you make sure that you're meeting all your nutrient needs.

Mike Roth: 9:05

When did you first discover the CLL Society?

Albie Suozzi: 9:08

Oh, wow. Because back when I was diagnosed in 2008, nothing really existed.

Mike Roth: 9:13

wasn't the CLL society,

Albie Suozzi: 9:14

CL society didn't exist until almost 2013, that's when Brian Kaufman and his wife Patty, developed the website Brian was diagnosed in 2005 and found the same thing I did. There was just nothing out there. You had to go to either the journal articles but to have a site that is reliable up to date. Had the most information that you could find specifically to CLL was a very difficult it just didn't exist. You really had to dig around the information. So in 2013, the CLL Society was developed with Brian Kaufman and his wife Patty, they developed the nonprofit site and the website and they decided to put, to go to work with it and interview CLL specialists bring those interviews. To the website and to start to develop this website so that people with CLL had a reliable resource that was up to date, so they could learn and educate themselves on CLL.

Mike Roth: 10:07

How has the CLL society helped you, particularly in your cancer journey?

Albie Suozzi: 10:11

Oh, I'll tell you, when I first discovered them, it was a great resource to me. I'm one that likes to go and learn about anything and educate myself. So when I first was diagnosed with CLL, my point for me that helped me get through a lot of it was educating myself I had never heard of the disease. So I went out and started reading articles and, finding the most UpToDate information, Once I found CLL Society and realized they had all this up to date information, it was wonderful. I could read articles, listen to interviews, and educate myself even more Just searching the internet and you will still find information that is extremely old Whereas if you head to the CLL society, which is specific to just CLL, you can find. Webinar by Seattle Specialists that give you the most up to date information and it's a wonderful resource.

Mike Roth: 11:02

Yeah. That is a problem with a web. Nothing ever dies on the web.

Albie Suozzi: 11:05

No, it does.

Mike Roth: 11:05

Information stays out there. I've even found my websites from 1996 Up on the web, which have been long since obsoleted. So you currently work for the society in what capacity?

Albie Suozzi: 11:17

I was hired as Dr. Kaufman's, Executive Assistant. So I work alongside him. the Seattle Society. We take on many different roles. It's not just specific to one role I also work with all the other people there I help out with advocacy. I also help out with program development. I. Help to develop. One of the particular programs we have, which is the peer support program. What that is, that's where patients who need to talk to somebody can request a one-to-one meeting with a volunteer at the CL society who has CLL or who has certain treatment. And so what we do is we find a volunteer that, matches up to them. And then they can have a discussion. It's up to them because sometimes people don't feel comfortable necessarily going to a support group. They would rather do a one-to-one conversation so that program is available to them. I also co-facilitate a watch and wait group that is specific to the central of the country. And I also help to co-facilitate a Rochester New York group that I started back in 2018. So I have multiple roles that I play within that society.

Mike Roth: 12:27

So just for instance, the Rochester Support group, is that a face-to-face meeting or a zoom type of deal?

Albie Suozzi: 12:32

It started out as a face-to-face, but when the pandemic hit in 2020, what the sales society decided to do was to make their support groups, which there's over 40 of them across the United States into virtual meetings. Has benefits because if you're in New York and you can't make, one of the New York support groups, you can always join one in California or Texas. It's up to you when you take a look at the list. As to which one you'd like to join based on your availability and day and time. So that's a perk to that.

Mike Roth: 13:02

What's the average time that A-A-C-L-L patient is in the watch and wait group?

Albie Suozzi: 13:06

it varies. It does vary and it can be a patient can walk in and diagnosed with CLL and they may be very advanced, even though they may not feel it, they may be very advanced. And at that point, the Dr. May say, we probably should start you on treatment. Whereas myself, my CLL was very indot, so it took 17 years to get me to a point of where I would need treatment. So it varies. It's very, CLL is very unique to each person who has it.

Mike Roth: 13:36

The average survival time after someone goes on treatment.

Albie Suozzi: 13:39

back when I was diagnosed, the treatments that existed Were actually chemotherapy or chemo immunotherapy. if you had certain genetic markers, it wouldn't work for you. it might give you a year's remission, maybe two years remission, and that would be it. In this day and age, they now have targeted therapies, which is what I am on. with that it can help to treat those that have very difficult markers to treat. research has been done and what they found out was based on these targeted therapies and what they now know CLL patients' life expectancy is practically near normal for somebody who didn't have CLL. So it's a much better survival rate and outlook for CLL patients now than it used to be.

Mike Roth: 14:22

How many CLL patients are there in America?

Albie Suozzi: 14:25

There are 60,000 blood cancer patients in the United States. 20,000 of those are CLL. So it's about a quarter. approximately 4,400 a year pass away, but that can be not necessarily due to their CLL, it can be due to infections. And that we are more prone to get because we are immunocompromised.

Mike Roth: 14:43

Is there anything that you wish you had known? Before you were diagnosed with cancer, that would've made it better.

Albie Suozzi: 14:50

I wish I would've had a doctor who didn't call me on the phone at work and say, oh, by the way, you have CLL and your chances of dying aren't very high because you could go out and get hit by a bus and die that way. And it was like, you're really calling me at work. You couldn't just make an appointment for me to come in and we could talk She obviously made the phone call and she was only gonna be on there for five minutes and left me hanging on the other end. That was very common for a lot of patients. That's seems cruel. I'd never heard of the disease. I don't know what it means. You say chronic, but how chronic is chronic? where do I fit into this pattern? I had a lot of questions to ask her, which I couldn't get to her for another six weeks, which is when she wanted to see me again.

Mike Roth: 15:31

Let's take a break. Okay. listen to, Dr. Craig Curtis. This is Mike Roth and Dr. Craig Curtis thinking about Alzheimer's disease. Alzheimer's treatment here in America.

Dr. Craig Curtis: 15:41

I think the future looks very good. I think that these blood tests are going to make a significant difference in our ability to detect someone who's developing Alzheimer's disease before symptoms. We know that disease actually started approximately two decades or 20 years prior. We know that amyloid starts building up. For approximately 15 to 20 years, which then initiates other brain cells to die off, essentially, which leads to Alzheimer's disease. So we're trying to remove that amyloid prior to that so we can prevent Alzheimer's disease. And we're also attempting to figure out if reducing that amyloid really slows the disease. We now have, the world's first medicine on the market that is, slowing Alzheimer's disease by removing amyloid from the brain. we're looking at newer, more advanced forms of those medications that remove the amyloid. more quickly in a matter of months.

Warren: 16:40

With over 20 years of experience studying brain health, Dr. Curtis's goal is to educate the village's community on how to live a longer, healthier life. To learn more, visit his website, craig curtis md.com, or call 3 5 2 5 0 0 5 2 5 2 to attend a free seminar.

Mike Roth: 16:56

what kind of advice would you give to others who were just diagnosed with CLL and told to wait and see?

Albie Suozzi: 17:03

I just like

Mike Roth: 17:04

you were.

Albie Suozzi: 17:05

It's very difficult to just be left and say, figure it out on your own. Go out and live your life because you're on watch and wait. most patients will get a cancer such as breast cancer or prostate cancer, and they're treated right away. But they really don't know what to do with this information. So I would suggest that they start to educate themselves on the disease take advantage of the sales society and go there and take a look at the webinars the different programs, read the articles. There's a spot for newly diagnosed patients that they can go to and start to learn about C. I also would suggest that they start to write down questions in a notebook. Anytime they run across something they don't understand, anytime there's an emotional question put it down in a notebook and take it with them to the next doctor appointment take somebody with you because that person is gonna be able to take notes for you. We don't always, as patients fully focus on what the doctor's saying because all of a sudden the Dr. May say something and you get stuck on it, and don't hear the rest of things

Mike Roth: 17:56

right over your head.

Albie Suozzi: 17:57

So the person that's taking the notes, they can help with that. I would also say, like I said before, has over 40 support groups. I would get involved with one of those support groups because you feel like you're alone. And you are really not alone in this journey. And you can get hooked up with a support group that will help you, that will support you, that will answer your questions based on their experience, based on everybody's experience.

Mike Roth: 18:24

Is there a book that patients can read?

Albie Suozzi: 18:26

LLS Society has different books that they can download the newly diagnosed section on the Seattle Society's website is a good place to go because there's plenty of information there and videos that they can sit down and work with. if they do go to the Seattle Society's webpage, you can get in touch with the peer-to-peer support group

Mike Roth: 18:43

The Web U RL is

Albie Suozzi: 18:44

oh zl cl society.

Mike Roth: 18:48

Cll society.org.

Albie Suozzi: 18:49

Dot org. Yep. And they can go there and set up a one-to-one to talk to somebody as well. some people will set up appointments and they've just been diagnosed a couple of weeks ago and they're scared and need to talk to somebody.

Mike Roth: 19:01

Is there a way to contact you via email after they hear this podcast, if they need more information?

Albie Suozzi: 19:08

Sure. They can contact me at. A S as in Sam, UOZ I at LL Society work.

Mike Roth: 19:17

So in wrapping up today's show, is there anything else that you'd like to tell? Our audience. Maybe it's to family members of someone who's been diagnosed with CLL, that information they should have.

Albie Suozzi: 19:29

as a caregiver or care partner of a CLL patient, please get on the CL Society's website, Understand that your partner is going through a lot emotionally, and they need you to sit down, listen, be with them, go with them to their doctor's appointments, and join them on the support group as well. Feel free to do that because your questions are just as important as their questions, and there are a lot of care partners that do join support groups to help just be there for them and understand they're going through a lot

Mike Roth: 19:59

Thanks for joining us today, Abby.

Albie Suozzi: 20:01

Thank you, Mike.

Bradley: 20:01

Thanks for listening. We're thrilled to share with you this podcast This podcast brings you knowledge, inspiration, and a lot of things that people need to know about The Villages and the people living here. Be sure to hit the follow button to get the newest episode each week. Creating this podcast is a labor of love. Now, here's where you come in. You can help us keep the podcast alive and thriving. How? By becoming a supporter. The easy way for you to support us is to visit our podcast. OpenForumInTheVillagesFlorida.Com and click on the supporter button at the top of the page or the purple supporter box. Even a small donation of three to ten dollars a month makes a big difference and you can cancel your subscription at any time. Your support means the world to us.

Dolores: 20:51

Our next show is Friday at 9:00 AM. Should you want to become a major supporter of the show or have questions, please contact us at mike@rothvoice.com. This is a shout out for supporters, Tweet Coleman, Ed Williams and major supporter Dr. Craig Curtis at K two in The Villages. We will be hearing more from Dr. Curtis with short Alzheimer's tips each week. If you know someone who should be on the show, contact us at mike@rothvoice.com. We thank everyone for listening The content of the show is copyrighted by Roth Voice 2025 all rights reserved.