Open Forum in The Villages, Florida

Navigating CLL: Albie Suozzi's Journey

• Mike Roth & Albie Suozzi • Season 5 • Episode 27

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The script delves into a conversation about Chronic Lymphocytic Leukemia (CLL) with insights from a patient named Albie Suozzi. It also promotes a listener-supported podcast based in The Villages, Florida, offering ways for the audience to support the show through donations and Amazon purchases. The conversation highlights Albie's journey with CLL diagnosis, treatment, side effects, diet changes, and the role of CLL Society in providing resources and support for CLL patients and their caregivers.

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Emily:

Welcome to the Open Forum in Open Forum in Open Forum in The Villages, Florida podcast. In this show, we talk to leaders in the community, leaders of clubs, and interesting folks who live here in Open Forum in Open Forum in The Villages,, to get perspectives of what is happening here in Open Forum in Open Forum in The Villages, Florida. We are a listener supported podcast.

Mike Roth:

How can you support our podcast? This is Mike Roth and listeners. I'm thrilled to share with you this podcast, which is my passion project for you. This podcast brings me joy, brings you knowledge, inspiration, and a lot of things that people need to know about Open Forum in Open Forum in The Villages,, and the people that are living here and what's actually going on. Creating this podcast is a labor of love, even though it demands more time than I can easily spare. But Hey, time isn't something we can buy back right now. Here's where you come in. The unsung heroes and heroines. You can help us keep the podcast alive and thriving. How? By becoming a supporter. There are two simple ways that you can support us. The first is a small monthly donation. Visit our podcast website, openforuminthevillagesflorida. com and click on the black supporter box. Even a small three to 10 a month donation makes a difference. And guess what? You can cancel any time, no strings attached. The second way that you can contribute to the podcast is by making a purchase of an Amazon product at Amazon standard prices. And we are paid a small commission on each purchase as an Amazon affiliate. That way there's no extra money out of your pocket, but you are supporting the podcast. Check every week because we're going to be adding new Amazon products that you can buy and support the podcast with. Thank you. And your support means the world to us. Stay curious, stay inspired, and keep those headphones on. This is Mike Roth on Open Forum in Open Forum in Open Forum in The Villages,,, Florida. Today, we're going to be talking about Chronic lymphocytic leukemia with Albie Suozzi and the disease has a common name, which we'll use in today's recording I'll be, why don't you tell our listeners A little bit about CLL. As it affected you? were the first symptoms that you noticed?

Albie Suozzi:

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. So what happened was it was just an incidental finding. They found it, it was at a very low level. And when they first found it in 2007, actually I ignored the PA's request to go to a hematologist. And so then the next year it hadn't progressed any. And she said, you really need to go. So I went and That's when I found out I had CLL. It was just completely incidental. So

Mike Roth:

were you?

Albie Suozzi:

I was 49 at the time, which was very young for a diagnosis. Normally a diagnosis of CLL will come along when people are like, maybe middle to late sixties, early seventies. That's about the time that. The most common time for CLL to show up and not to say there are younger people, there are people in their 30s. It's rare, but there are people in their 30s that do get a diagnosis of CLL.

Mike Roth:

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

Albie Suozzi:

it actually it can be both. Some CLL can run in families. It's possible. And some CLL, there is no reason there are no risk factors. Like for myself, there wasn't anything, it didn't run in my family. So there were no risk factors. I wasn't around anything like any kind of fertilizers or pesticides, anything like that. And, but for veterans, they have found that agent orange can cause CLL. And therefore those that were exposed to agent orange can get CLL and go through the vets to get help with that. But it's, it varies. But you weren't a vet. Nope, not that either. No

Mike Roth:

When did you first begin treatments?

Albie Suozzi:

I began treatments in, let me see here, 20, June of 2023. So just last year, it's only been a year. I was, I'm watching wait for almost, if you figure 2006 when they I originally, It was noted. I originally had CLL. It's been almost 18 years today as of today. So 17 years into watching weight and I was began treatment in June of 2023 with a drug called, its brand name is CalQuence and, or a Calibrutinib, which is a tablet. And I take it twice a day. And it, what it does is it, the cancer, it fights back the CLL and it keeps me into what I am now currently in a clinical remission. But I do have to take this every day and I have to take it every day until it stops working.

Mike Roth:

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

Albie Suozzi:

I did when I first started the first six weeks I had very intense headaches. They were They were almost like migraines. 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 passed 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 dropped very low. I became very fatigued. I had to take 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 of hours, which I'm not a napper, that's not me. And I broke out in a full body rash, which is at that point and my liver enzymes. took a rise. So at that point, 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. And I was on a lower dose, half the dose for about a month and a half. At that point, everything started to normalize. And then in October, September, I believe it was September. I started back on the full dose. At that point in time, my liver enzymes 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 normalization of their blood levels. can happen, within three, four months. Others, it 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 experienced were very common to a calabrtinib. So it wasn't unusual for these types of side effects to happen, but it was good that I had a doctor that understood the side effects. understood them and understood what he needed to do in order to allow my body to heal a little bit and to allow it to adapt to the medication.

Mike Roth:

It sounded like you had really serious side effects.

Albie Suozzi:

They could have, if the hemoglobin had dropped to seven, I would have had to have a blood transfusion. The platelets, you don't want it to drop too low because then of course, you could hit. take the you could have spontaneous bleeding. You could become, very bruising could be more than you'd want it to be. In bleeding, you would cut your hand and you could just continuously bleed, which is not obviously not good. So they want to make, they want to make sure that, and they, their concern too, is to make sure that your bone marrow is still functioning. And so therefore they want to make sure that, your bone marrow can repair itself and come back to normal.

Mike Roth:

Have you done anything, did you do anything special to get through these side effects?

Albie Suozzi:

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 or so. And what was happening was, is I just really wasn't doing that. And so he told me, he said, you, you've got to not do a lot for the first three or four months, you're going to understand your body is going through a lot getting used to the medication. It's also ridding your body of all the 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 rest and take a rest 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. And

Mike Roth:

Are you still working?

Albie Suozzi:

Yes, I work part time with the CLL Society. So yes, I was still working and I was still doing that in between headaches, I was still doing that. And so he was, but he was insistent. I take these, take the time to heal. And that's exactly. What I had to do. And and 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 to, to happen because what they did was they were all transient. And in the long run, when I look back, they were all transient. Some might've lasted longer than others, but they 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:

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

Albie Suozzi:

I did. And not that I was always a bad eater or that I always went after processed foods or went to McDonald's or Burger King. I didn't really do that anyway, 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, I would still eat red meat and I still do eat red meat, but I make sure it's a lean cut and I make sure that it's, no more than maybe once or twice a week at most. Chicken, fish, things like that, that were better. I did that. I watched how I watched how I actually cooked them. I watched the fat intake. I, so I added and many more. When I say Fruits and vegetables. I added many more fresh fruits and vegetables than I had in the past. Varied because 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. Okay. But I ended up changing those types of habits where I was worried about making sure I ate what was good for me. And, so once CLL happened, that's when I started to adjust my diet to make sure that I was meeting all its nutrient needs at that point in time.

Mike Roth:

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

Albie Suozzi:

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 meats, things like that, lean meats. I think it does. Your body feels better. You have much more energy. You are sharper in your thinking and your body can use those nutrients that sometimes by not eating that way, we don't get we. We skip those types of vitamins and minerals that we were truly really need because we're not including those in our diet naturally. And supplementation isn't always the way to go. There are certain supplements that you do want to take to make sure you have enough of, for example, vitamin D. And that can be checked by your GP, your doctor to make sure that, 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 some cancer or sorry, some cancer, skin cancer. Yeah. So

Mike Roth:

edged sword.

Albie Suozzi:

know, so including a supplement for that, but you want to 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. So you make sure that all you're meeting all your nutrient needs.

Mike Roth:

When did you first discover the CLL Society?

Albie Suozzi:

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

Mike Roth:

There wasn't a C Society.

Albie Suozzi:

No, CLL Society really didn't exist until almost 2013. And that's when Brian Kaufman and his wife, Patty, developed the website and realized because Brian wasn't diagnosed. He was diagnosed in 2005 and he found the same thing I did. There was just nothing out there. You had to go to either the journals, journal articles, or you had, but to haven't. Have a site that is reliable, up to date, had the most most information that, you could find. And specifically to CLL, it was a very difficult thing to do. You, they, it just didn't exist. You really had to dig around and find the information. So in 2013, the CLL Society was developed with Brian Kaufman and his wife, Patty, and they developed the nonprofit site. And the website and they really 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 go in and they could learn and educate themselves on CLL.

Mike Roth:

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

Albie Suozzi:

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 I'm, to 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 on what I had never heard of the disease. So I went out and started reading articles and, but finding the most up to date. Articles and based on what I had and all the information, prognosis, things like that, that it was just very difficult to find. Once I found the CLL society and I realized they had all this up to date information, it was wonderful. I could go through, I could read articles, I could listen to interviews. And then I started to educate myself even more so and got more information than I had ever found before. Just searching the internet, and what was nice was that you go on the internet now and you will still find information that is extremely old and out of date. Whereas if you just, if you head to the CLL society, which is specific to just CLL. You can find webinars by, CLL specialists that, give you the most up to date information and it's a wonderful resource.

Mike Roth:

Yeah. That is a problem with the web. No. Nothing ever dies on the

Albie Suozzi:

No, it doesn't. It doesn't.

Mike Roth:

Information stays out there. I've even found my websites from 1996

Albie Suozzi:

Yeah.

Mike Roth:

out there on the web which have been long since obsoleted. So you currently work for the Society in what capacity

Albie Suozzi:

I do. I was hired as Dr. Kaufman's assistant, executive assistant. So I work alongside him. I work, but it's, see, with, The CLL Society, we take on many different roles. It's not just specific to one, one item or one role that we were hired for. So I also work with all the other people there that, so I help out with advocacy. I also help out with program development. I help to develop one of the particular programs we do have, which is the Peer Support program, which is a one to one. It's a peer, it's called the Peer Support Program. What that is it's a, that's where patients who need to talk to somebody can call, and request or, email and request that they would like to have a one to one meeting with a volunteer at the CLL Society who has CLL or who has certain treatments. And so what we do is we find a volunteer that matches up to them And then they can have a discussion. It can be an hour and a half long. It's up to them. Because sometimes people don't feel comfortable necessarily going to a support group and they would rather do a one to one conversation. So that program is available to them. And I also am a facilitator. I co facilitate a watch and wait group that is specific to the central country central the country, and I also facilitate a help to co facilitate a Rochester, New York group that I started back in 2018. So I have a multiple of different roles that I played within that Seattle society.

Mike Roth:

just for instance, the Rochester support group, is that a face-to-face meeting or is that a zoom type of a

Albie Suozzi:

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, into virtual meetings, which has benefits because if you're in New York and you can't make, say 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 was a, that's a perk to that.

Mike Roth:

What's the average time that A CLL patient is in the wa watch and wait group?

Albie Suozzi:

It varies. It does vary. And it can be a patient can walk in and they're 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 doctor may say we probably should start you on treatment. Whereas myself, my CLL was very indolent. 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. It's very, a very individualized disease.

Mike Roth:

The survival, average survival time after someone goes on treatment

Albie Suozzi:

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

Mike Roth:

How many CLL patients are there in the America Estimates?

Albie Suozzi:

Approximately let's put it this way. Approximately 60, 000, there are 60, 000 blood cancer patients, blood cancer, all blood cancer patients in the United States, 20, 000 of those are CLL. So it's about a quarter. Yeah, it's about a quarter and there's approximately 4, 400, I hate to say this, 4, 400 a year that do, they do 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:

Okay. Is there anything that you wish you had known before you were diagnosed with cancer that would have made it better?

Albie Suozzi:

I wish I would have 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, 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 because 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, they

Mike Roth:

Seems cruel.

Albie Suozzi:

Yeah, it is because it's like I've never heard of the disease. I don't know what it means. I don't know, you say chronic, but how chronic is chronic, where do I fit into, where do I fit into this pattern? It, so 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:

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

Dr, Craig Curtis:

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. A person who develops memory loss due to Alzheimer's disease, we know that disease actually started approximately two decades or 20 years prior. We know that amyloid starts building up for approximately 20 years, 15 to 20 years, which then initiates other brain cells or 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, once somebody already has the cognitive changes or memory symptoms, we're trying to figure out if we, if reducing that amyloid really slows the disease. We now have, of course, the world's first medicine on the market that is slowing Alzheimer's disease by removing amyloid from the brain. And we're looking at newer, more advanced forms of those medications that remove the amyloid much more quickly in a matter of months. That's very exciting.

Warren:

With over 20 years of experience studying brain health, Dr. Curtis's goal is to educate Open Forum in Open Forum in The Villages,, community on how to live a longer, healthier life. To learn more, visit his website, CraigCurtisMD. com or call 352 500 5252 to attend a free seminar.

Mike Roth:

so I'll be, what kind of advice would you give to others who are just diagnosed with a CLL and told to wait and see

Albie Suozzi:

I,

Mike Roth:

just like you were

Albie Suozzi:

It was, and it's very difficult. It's very difficult to just be left and say, excuse me, figure it out on your own, go out and live your life because you're on watch and wait. That's a very difficult thing to do because most cancers, most patients will get a cancer such as breast cancer, prostate cancer, and they're treated right away. So they really don't know what to do with this information. So I would suggest. That they, first of all, they start to educate themselves on the disease themselves. I would, that's where I would take advantage of the CLL 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 CLL. 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 that they want to put down, put it down in a notebook and take it with them to the next doctor appointment and take somebody with you because that person is going to be able to take notes for you. And because we don't always as patients really fully focus on what the doctor is saying, because all of a sudden the doctor may say something and you get stuck on it and you don't hear the rest of things

Mike Roth:

Right over your head.

Albie Suozzi:

So the person that's taking the notes they can help with that. I would also CLL, 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're 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. Everybody will always tell. I'm sorry,

Mike Roth:

a book? Yeah. Is there a book that a new patients can read

Albie Suozzi:

LLS Society has different books that they can download if they so choose. Or like I said, the newly diagnosed section on the CLL 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. And that's too, where if they do go to the CLL Society's webpage, you can get in touch with the peer to peer support group and you can

Mike Roth:

the website, the websites, URL is

Albie Suozzi:

Oh C. L. S. C. L. Society

Mike Roth:

cllsociety. org.

Albie Suozzi:

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

Mike Roth:

Is there a book? await to contact you via email after they hear this particular podcast, if they need more information.

Albie Suozzi:

Sure. They can, they can contact me at A S as in Sam, U O Z as in zebra, Z as in zebra, I. at CLLsociety. org.

Mike Roth:

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

Albie Suozzi:

Yeah, as a caregiver or a care partner of a CLL patient please get on the CLL Society's website. Take a look around. Understand that your partner is going through a lot right now emotionally, and they really truly need you to sit down, listen, be with them. Go with them to their doctor's appointments. And please, you can also join them on the support group as well. And 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 those support groups to help them out, but just be there for them and understand they're going through a lot at this point in time.

Mike Roth:

Thanks very much for joining us today, Abby.

Albie Suozzi:

Thank you, Mike. I appreciate it.

Emily:

Remember our next episode will be released next Friday at 9 AM. Should you want to become a major supporter of the show or have questions, please contact us at mike at rothvoice dot com. This is a shout out for supporters Tweek Coleman, Ed Williams, and major supporter Dr. Craig Curtis at K2 in Open Forum in Open Forum 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 at rothvoice. com. We thank everyone for listening to the show. The content of the show is copyrighted by Rothvoice 2024, all rights reserved.