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Living With A Rare Cancer

Listen to The Mighty Podcast episode, ‚ÄúLiving With A Rare Cancer.” We‚Äôve also provided a transcript below.

In this episode, Mighty host Ashley Kristoff interviews patient advocates Michele Nadeem-Baker and Terry Evans about their lived experiences with a rare cancer, chronic lymphocytic leukemia (CLL), including their diagnosis journey and how they found a supportive community. This episode of The Mighty Podcast is sponsored by Pharmacyclics and Janssen Oncology.

[PODCAST EMBEDDED HERE]

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Transcription:

Ashley  

Welcome to The Mighty Podcast where we infuse the health space with positivity, humor and vulnerability. The Mighty is a safe and supportive community here to help you find the people and information you need to navigate your health journey. We’re so excited to spend some time together today. Now let’s get into what the health we’re talking about.

Before we get started, I want to note that the educational content of this podcast is not intended to be taken as medical advice and should not replace the recommendations and advice of your doctor. Any questions specific to your health or treatment, or specific brands and products should be discussed with your health care team. Today’s podcast is sponsored by Pharmacyclics and Janssen Oncology. Both Pharmacyclics and Janssen are compensating spokespeople Michele and Terry for their time today.

My name is Ashley and I’m part of The Mighty team. I’m really excited to introduce our guests for this episode, Michele and Terry who both live with chronic lymphocytic leukemia or CLL, as we’ll primarily be referring to it. Michele, Terry, so good to have both of you here today to share your experiences being diagnosed and living with CLL.

Michele  

Thank you for having us today.

Terry  

Thanks very much. We appreciate it.

Ashley  

Yeah, thank you for being here. I’m so glad we could all chat today. You both have extraordinary stories about turning a cancer diagnosis into a passion. I’m interested in hearing more about how you went from being diagnosed with a blood cancer to two prominent CLL patient advocates. Before we get into what CLL is and both of your journeys, Michele, can you tell us a little bit about yourself?

Michele  

Yes, I have had CLL for about almost eight years now and I was taken quite by surprise when I was diagnosed. I was at the top of my game in my career, I had a dream job. I’m in communications and I was the Chief Communications Officer for a multibillion-dollar publicly traded company and I was living between Boston and Miami, Miami where I worked. And I was also always on airplanes and every other mode of transportation for work, so my fast-speed life came quickly to a grinding halt when I learned my diagnosis. So it was, it was quite profound in my life for the change.

Ashley  

Absolutely, I can absolutely understand that and we’re definitely going to get a little bit more into the way that change has impacted your life. Terry, do you want to tell us a little bit about yourself?

Terry  

Yeah, I’m from California and was diagnosed 20 years ago actually. I’ve got a lovely wife and four children and 11 grandchildren and at the time of my diagnosis in 2000, I thought everything was just going along swimmingly. I was on a good career path, I had a great job and had no physical ailments at all, that unless getting older is a physical ailment. So, like Michele, out of the blue, I get diagnosed with a disease that I’d never heard of. Let me tell you it’s quite a shock to go from zero to 100 in one doctor’s office visit and it was, as most people that get diagnosed, it comes as quite a shock to them, as it did me.

Michele  

I can’t agree more, Terry. I had no clue there was anything wrong with me either. I felt fine. And, you know, I was told I had the C-word which I wasn’t expecting and I was like sitting there like, “C-huh?” and I’m like, “Oh my god, not that ‘C!'”. And it’s even hard for me to say the word cancer to this day and then to learn exactly what it was because I had just never heard of it and I wasn’t expecting it. So it’s been quite a journey and for my family as well.

Ashley  

Absolutely and I think we want to chat a little bit to get some background for our listeners who may not be super familiar with what CLL is. So generally people have heard of leukemia before but can you share a little bit more about exactly what chronic lymphocytic leukemia is?

Michele  

Certainly, it is the most prevalent leukemia, although it is considered a rare disease with about 20,000 people in the United States being diagnosed annually. And that’s as well as, and that as well as all the other people who already have CLL. It is also something that generally affects men, predominantly in their late 60s to early 70s, of which I’m neither. There are, of course, exceptions to that rule and there were also women diagnosed, younger men and women.

It is a blood cancer as the name leukemia implies and it is chronic. And that it’s something that you have and there is no cure and you have treatment through life. Some people like one and, one and run. They can be treated and not treated again, but others need treatment more frequently. It’s just different for different people. It’s, there’s not one size fits all in this particular disease.

Terry  

CLL really is classified as a leukemia and a lymphoma, which is interesting because it can either come from your lymph nodes, or your bone marrow or be active in your blood. It’s a cancer of the B cells of your blood, which, unfortunately, are also some of the cells that protect you from infection. And so what happens is that if you have CLL, you almost automatically have a compromised immune system, which means that you don’t fight infections as well. You may get sick more often, some do. And going back to what Michele said, a lot of people, you know, get diagnosed at an earlier age than the average age of 71. I was diagnosed at 52, which is, according to the statistics pretty early, it really, like Michele said, it’s no one size fits all. Everyone responds differently to treatment. Everyone goes a period of time before they need treatment. About 20%, 20-25% of CLL patients never need treatment.

Ashley  

Thank you both for giving a little bit more context about what CLL is, I do think it’s really interesting that you both mentioned it’s the most common form of leukemia in adults but both of you had also said that you had not heard of it before you were diagnosed so I’m really curious about what that diagnosis journey looked like for you.

Michele  

For me at the start, I went through my shock period. Then I used that time of watch and wait, which for me, was about half of what Terry had. My watch and wait period lasted three and a half years. And in that time, I started learning more and more about what this CLL was and also within that, what it meant for me with the particular what they called genetic markers of prognostic indicators that I had, which each patient knows if they have them or not, or should learn what they are. And that’s determined by certain blood tests that are done. And that helps determine what your treatment will be. And for me, so first, I learned about what CLL was, I looked at anything I could find online that was patient-friendly, which at the time, and we’re talking years ago, there wasn’t much.

And in the beginning, it was quite frightening. And I stopped going and consulting Dr. Google because it had all of these very old statistics and false statistics. There was just really crazy stuff and there was hardly any current information. You have to pick and choose what is credible and how, how did I do that? I looked for things that interviewed doctors, specialists in CLL, and then I started learning about it. Learning about resources that were credible to refer to on the internet, because I didn’t know anyone who had CLL. They had nothing at the cancer institute that I go to for CLL patients. And at the time, there were no support groups, virtual, in-person or otherwise. It was the solo journey in the beginning. And that was tough. And that changed as things move forward.

Ashley  

Yeah. And I’m curious, did the doctor that diagnosed you, how helpful were they in giving you a little bit of context about CLL, or just giving you some of the information you were, you know, eventually ended up looking for?

Michele  

Well, what’s interesting is the doctor who diagnosed me I never went back to because that doctor was incredibly unhelpful in that he shocked me with telling me what I was diagnosed with. When I asked for more information. He didn’t have any. All he told me was basically he’d see me in four months and to me that was very counterintuitive for just being told I had cancer, or as he referred to it, the C-word. And when I asked if there was any kind of site he could refer me to online he said, “No.” I asked if that hospital medical system had any pamphlets, he said, “No.” You know, I was willing to take anything old school, you know, online and I just walked out of there, because he really told me nothing. All he told me was to stay out of crowds and to wear a mask if I was in a crowded place, at an event or on a cruise ship, and I was in the cruise industry, and I led huge events. So that would have been kind of difficult for me.

I also left because I was a communicator, and this man could not communicate with me and tell me anything. What I learned within a day is there are such things as CLL specialists and, thank god, the best care partner in the world, my husband, had found me not only a CLL specialist but the head of CLL which I didn’t even know any of this existed before that date I was diagnosed. And I saw her within a couple of weeks and moved everything back to Boston. So my life I left all behind in Florida and went to live basically, in my mind, in Boston, in many ways live there.

Ashley  

I think is really important that you both mentioned how out of the blue these diagnoses were. When I had gotten my cancer diagnosis, it was completely out of the blue as well and I think for so many people, that’s such a common experience that we do get kind of blindsided by these diagnoses. So I’m a little bit curious about, you were shocked by this diagnosis, do you have other symptoms that made you think it may have been something else and not cancer?

Michele  

Looking back the only thing I, I had two things, but I didn’t know they were related. I was bruising easily but I’m a klutz. And, you know, I thought that was from that. And that wasn’t a new thing of my lacking some grace at times. And the other was I was tired all the time, but I was only getting two to four hours sleep a night, seven days a week because of the demands of my job and it being a global job. And there being various crises and happenings in the industry I was in at the time. I just thought that was pretty normal that anyone would be tired. So that, that was all. I really felt fine otherwise.

Ashley  

Yeah, that makes a lot of sense to me, like, I would so easily dismiss a lot of those symptoms. And you know, how could you have guessed it would have been cancer based off of that experience, and those things that you knew in your life were already happening?

Michele  

That’s so true. It’s so true. Looking back too now, once you start learning things, right, I was, there’s something called night sweats with CLL and I was getting hot a lot. But give me a break, I was working and living in Miami. That’s yet another thing you know? And also being of a certain age, it could have been hot flashes and some of it probably was, but some of it probably wasn’t. You don’t know any of this at the time. There’s always, I mean for me, there were other explanations for these things that did not affect, I mean they didn’t stop me, that’s for sure in my life, until this diagnosis.

Ashley  

For sure. Terry, I’m a little bit curious about your diagnosis journey. When you got your diagnosis were you experiencing symptoms when you went to the doctor or how did you learn about that you had CLL?

Terry  

No, when I was diagnosed, it was basically started with a routine physical that I had been getting every year and my local GP just said, “You know, your, your white counts going up a little bit, do you have a cold?” And I said, “No” and so he basically sent me to a hematologist and I had my first contact with him. Took some blood, did some, ran some tests. There is a test you can do called flow cytometry, which will tell you whether or not you have CLL and he ran that, course that time I didn’t have any idea what tests he was running and when I went back and he told me that I had CLL, like many people, I never heard of it. I wasn’t feeling bad. I had absolutely no symptoms at all. He told me, “Well, you probably won’t need treatment for a while.”

The next seven years was probably the dumbest part of my journey. Because going in every six months, I tended to ignore it until the time that I had my blood test and then I’d start worrying again, and then he’d say, “Well, it’s gone up a little bit, but no big deal,” and then I go back another six months. So I lived in this kind of seven-year fog, where I really didn’t do much, you know, like Michele, I had gone to the internet and found all these crazy people talking about what you should do and shouldn’t do. Most of it was very old data, you have to keep that in mind when you go to the internet, anything you see is basically old data, they can’t predict the future. Generally, newer treatments are really not talked about that much.

I continued going to my local hematologist, who was supposedly the best one in the area. I had had references from doctor friends who had told me, “Yeah, that’s the person to go to.” But unfortunately, I developed a complication at the end of my seven years called autoimmune hemolytic anemia where your body basically attacks your own red blood cells and it was right at the same time that he started me on treatment. And when I started treatment, I had all the classic B symptoms that people sometimes develop; night sweats, weight loss, fatigue, and my white count had risen to astronomical levels.

He started me on treatment, I then basically developed this complication, at which time my wife decided that I wasn’t getting the best treatment. She found a specialist for me. We made an appointment with the specialist and he basically not only changed the course of my treatment, but saved my life because I was really in bad shape at that point in time, and not really being well managed by a local hematologist, unfortunately. Because, you know, like Michele said earlier, everyone with CLL is different, everyone responds differently. Everyone has different side effects from drugs. Some people, you know, respond very well to one drug, but don’t respond to another one and vice versa. So it’s a very unique disease in that everyone is kind of different. Everyone has different, in what they call genetic or prognostic markers in their blood, and all of those things tend to lead you down a different path.

And if you’re not seeing a specialist, which is something that we in our support groups highly recommend that you get a specialist on your team that deals with CLL specifically, rather than a generalist because more than likely, they’ve seen all these complications that might happen in CLL and can manage those which is really important in your journey. You really have to have somebody on your team that really knows what they’re doing. I just can’t emphasize that enough.

Ashley  

I want to go back to what you said about how your day-to-day life really didn’t change much right away because you were able to put off thinking about it because you weren’t having symptoms. You have had such a long waiting period. I’m really curious too, it at that diagnosis point for both of you, did you share this information with your loved ones? And how did those conversations go?

Terry  

I think for me, you know when I was diagnosed, my youngest daughter was eighteen so she was basically a young adult and could handle it. If I would have had smaller children, it would have been probably a different story. I did share my diagnosis with my immediate family, and one or two of my closest friends. I did not share it at work, because looking at me, you know, I mean, I went for a doctor’s visit every six months and that’s, you know, could be normal for anybody. So I did not share it and I think a lot of people have that fear that if they share it in a work environment, that there’ll be a stigma attached to it. “Oh, you have cancer,” you know, and people, I think, even after I did tell people that I had it, people did treat me a little bit differently.

It’s interesting, when you have a diagnosis, there are some that kind of shy away from you and there are others that jump in and want to fix it. And unfortunately, with CLL, I even had somebody tell me that I wasn’t sick, I didn’t have leukemia, and I said, “Well, my blood tells a different story. Even though I might not look sick, I really am.” I think sharing the diagnosis is really a very personal decision. Some people want to tell the world and other people don’t want to tell anyone. And we have people in our support group that have told one child but not told another one, unique reasons why they wouldn’t want to do that. But I think everybody is different in the way that they share this, you know, once you go into treatment, everything changes, because you may be out of work for a period of time, or you may be gone, or you may be really sick. So I think at that point in time, there really is some changes in who you communicate this with. Initially, it’s certainly a personal decision.

Michele  

For me, in some ways, I was very similar to Terry in that I didn’t tell many people. I was afraid to and I was afraid of career suicide. I was afraid that I didn’t want people to perceive me as sick or as Terry had mentioned, perhaps a stigma. Even that first day, I think I was a bit crazy that first day of diagnosis. I too was alone, because I had no clue what was coming. I considered even not telling my husband and just leaving him because we had only been married about a year and a half and I didn’t want him to have to go through this with me. His deceased wife had cancer so I did not think that was a fair thing to do to this poor man until my, I did tell my sister and she’s the one who basically, you know, like knocked me on the side of the head basically over the phone and said, like, “Are you serious? Come on, you can’t do that.”

And I never did tell my mother, because you know she was older and looking back, I should have. I don’t know, again, I was afraid of that I just had all this fear, probably all about having something that I never knew I had, and that it had the ‘cancer’ word attached to it. I should have, you know, can look back and say things and I should not have worried about that because I didn’t need me, I didn’t need treatment for three and a half years. I didn’t tell a lot of people and then I did. The day I started treatment three and a half years later, I went all out and went big and did a live broadcast from the infusion chair to help other patients so that they wouldn’t go through what I did about, you know, not knowing and the fear and to demystify the journey. And by then I had armed myself with knowledge, which was really empowering.

Ashley  

Absolutely and I think there’s something very real in the cancer community and in a lot of these rare conditions where there feels like there’s an emotional burden attached to it. And we feel as patients, it’s our responsibility to shoulder that. And learning how we can help others support our weight I think is always going to be an emotional turbulent role for anybody in that position. So I admire both of you in being able to share so publicly at this point in your journey to help other people who are in the same boat.

Terry  

You know, it was interesting. In the beginning, when I was diagnosed, I was just sending out email updates to people after I really began treatment and saw a specialist and kind of had a better idea of what my future held for me. I started a blog and it’s a public blog so instead of sending out emails, I just update my blog on a regular basis. And for me, it was a way of sharing this, like Michele, it’s really difficult for somebody to go through this that has no clue as to what the future may hold, especially nowadays, the treatment options out there are much more than they were when I was initially diagnosed. And I think in some ways, it educates people, in some ways, it gives them hope. You know, here I am a 20 year CLL survivor gone through many treatments, and here I am today and still able to share my journey and to share what I’ve learned and what mistakes I’ve made. I’ve made a number of mistakes on the way that I really wish that other people would not have to experience. So it’s another way for me to expose them to that.

Ashley  

Yeah, thank you both for sharing that diagnosis journey with everyone. I think it’s so, you know like you said you’re here sharing with everyone and I think it really is the thing that can help other patients who get that diagnosis, learn what maybe they’re going to experience or just help them guide along the way. So I really want to dive a little bit into some details of ‘watch and wait’ that you guys have talked about here. And I wanted to know about, a little bit more about when that period you knew was gonna be over, right? So you have this period where you’re not really getting treatment, you don’t need it, doctor saying, “No,” but when was it time for you to kind of make a decision? And did you feel confident in the decisions that were being made in your treatment plans?

Michele  

I felt extremely confident with my doctor’s decision, in her suggestion, I should say first, and then the decision on a clinical trial. For me, the time was then. I was given about a week’s notice that it was time to start treatment, that my disease had started progressing and she could tell from being a CLL specialist, she could tell from various signs such as through manual exams, she could tell that my spleen had enlarged, she could tell that lymph nodes had continued to grow and through my bloodwork, she could tell one of the ways they indicate for some and not all, white blood count starts doubling and doubling and doubling after a few times. I’d been getting checked every three months, and it started becoming every two months and then it was one month and it was time.

And I was very confident in it although I wanted to start treatment immediately, my conversation back with the first doctor is, “Why can’t we take care of this now?” And now all of a sudden being told I want treatment and all of a sudden I’m wishing I watch and wait was longer. It was so funny because I couldn’t wait for treatment and then it’s like, here it is so I was like, “Ah, can we have a little longer and watch and wait? I kind of liked that!” I started the next week and it was a combination trial and now I was on it for about four years and I have been off of it about a year and a half now and I feel wonderful. As the doctor said, I will need treatment again. It’s not a matter of if it’s when. I am happy to stay in watch and wait, I’m back in watch and wait now. We will see when I’m back in treatment.

Ashley  

For sure. How did you prepare for those conversations with your doctor about treatment options?

Michele  

I was very open and it made it be known I was very open to clinical trials because it’s receiving tomorrow’s treatment today. I know they’re not for everyone. I know not everyone is open to them. I was very open to it. I now know to ask a few more questions but again, they don’t know because it is a trial. I did my homework on what was around. There were not all that many choices at that time but there were a lot of things in the pipeline. A lot in research. There is even more now. And my trial, thank goodness I went on it because otherwise there probably would have only been one other option at the time. I did get, I guess it would be considered today’s treatment then. It started about five years ago, my trial. It’s worked well. And also, as Terry mentioned and I did, CLL specialists, do know what’s happening, they do know the trials that are out there, and they also will be able to tell you the best treatment for you. In my case, mine guided me. I had that trust there and it’s very important to have a doctor you can trust.

Ashley  

Yeah, I think that is so important how you mentioned that you know, you, you made the decision that you felt was right for you and you discussed with your doctor and you felt confident because you were part of that decision. I’m curious Terry, about what happened in, you know your journey when you had started to experience symptoms.

Terry  

Well, my experience was actually the opposite of Michele’s. I went in on Tuesday for one of my normal checkups and my doctor informed me that on Friday, I was going to start treatment. At that point in time, I was actually feeling so bad that really gone on too long to start treatment. I could hardly walk up a flight of stairs once a day at that point in time and I was so sick that whatever the doctor said, I agreed to because at that point in time, was part of the stupid part of my journey, was that I had not done enough research to find what the treatment options were. But keep in mind, this was 2007 and in 2007 there weren’t a lot of options available. I just went blindly into treatment.

It almost cost me my life, unfortunately. I probably waited too long to treat. It was probably the wrong treatment at that particular point in time and it wasn’t till about two weeks later when I actually got to see a specialist that everything changed for me. I can say now that, you know, through my wife, finding the specialist and demanding that I see the specialist and through the medical team that I finally hooked up with him and I’m still with today, they saved my life. And at that point in time, I think was a real eye-opener for me. I decided that I had to get much more involved in the decision-making. I had to be a participant rather than a spectator, which I think is really important for people.

I know that not everybody is comfortable in dealing with this. I know a lot of people where the caregiver winds up being the one that knows a lot about CLL and the patient basically is led by the caregiver and I think that depending on your personality that may be appropriate for you. For me, I want to be now directly involved. I want to read everything I can on what’s going on in the CLL world. I want to know who the best doctors are if I have to go to two or three or four, I will. If I need treatment again and that lapse in judgment caused me to change my whole approach to how I was going to be involved in managing my CLL.

Ashley  

Absolutely, I think something that really resonated there is I think a lot of patients do have difficulty with, you know, when you’re in a vulnerable state due to your health, it’s so much easier to just go along, take your doctor at whatever they’re saying to you and accepting that that is what’s going to happen because you are so vulnerable, and you just need help and support now. So I think that’s such a good point that you now, you now know that you need to be a little more proactive with your treatment and your background and you know, to come with more of that research, and you have that specialist and everything like that. So I think that’s so great.

And I can only imagine too, right? So it’s like a roller coaster, where you got the diagnosis, right, you go downhill, and you’re sitting and waiting, and you’re just kind of ticking up. There’s anticipation, you know, something is gonna happen, but then suddenly, it drops back down and you’re, you’re in the midst of the treatment. So it can be, I think, very overwhelming to hit with the highs and lows in the way that you did. So I’m just so glad you’re, you know, you’re here and I’m so glad you’re both here to speak up and encourage others to be prepared so that they can be in the best position that they can be if they live with CLL as well.

Michele  

Terry and I both learned, but at different times in our journeys, the importance of seeing a CLL specialist as CLL patients. And I learned it early on and thankfully, you know, my husband learned and found that there’s such a thing as a CLL specialist. I could still be seeing a general oncologist and my CLL specialist is who made all the difference for my treatment and knowing that I was getting the right treatment at the right time. A lot of patients are seeing community oncologists just because that’s all there is it’s close to them geographically, and they can still have consults with these CLL specialists. I can’t stress enough the importance of that. And that is one of the first things that I tell patients if they’re asking what should they do is make sure that they’re seeing one and seeing one that is up to date on all of the latest research.

Terry  

I think today, the world we live in with telemedicine becoming used more and more, people who can’t get to a specialist because of maybe geographical locations can now. I know somebody that is going to have their first consultation with a specialist over a telemedicine appointment. I mean, if they lived 10 miles away, it wouldn’t be a big deal but if they live 200 or 300 miles away, it is a big deal to go and see a specialist. So this is really opened up a whole new opportunity for people to tie into a specialist and we don’t necessarily advocate that a specialist be your primary doctor, because a lot of times they’re so busy, they can’t answer every question you may have. But if you have a team where you have a local oncologist that works well with a specialist, then you know it’s kind of the ideal world where you can run things by a specialist if and when you need to make a decision. But then the local person can carry out those wishes. Not necessarily easy to find but it can be done, you know to find people that work as a team.

Ashley  

So you’ve both devoted a lot of your time to being advocates for CLL patients. It’s truly amazing you’ve been able to help so many people living with CLL and other cancers. What is something that you both wish you knew when you were first diagnosed?

Michele  

I wish I had known other CLL patients or been able to find them more easily and that is easier these days because things have advanced so much online, because of social media, because there are now support groups. There’s just so much I wish I had known before. It’s like thinking it over in my head, being able to speak in a community where it’s safe, where people who are there for you, who know what you’re going through because they’re walking in the same shoes or have ahead of you or are behind you and all helping each other. It’s just, it’s great to not be alone, and to be in those communities.

And you know, on Facebook, there are a handful of them for CLL patients. I’m a co-administrator for one called the CLL Support Group and I just see it Terry sees this too, it’s the same, and even in virtual support groups where you meet, you know, every week or every month, you keep hearing about the same things like, “I don’t know what to do,” like the same things Terry and I have said, “I didn’t know there was anything wrong with me. I don’t know who to go to. I don’t know if I’m being told the right thing. How can this be that I’m not being treated?” And we are all there to help each other. It’s just such a beautiful thing. These communities where people do speak openly with each other and help each other out in that in my advocacy it’s all again to just help educate people and that is one of the best things now being able to learn and keep up on things and what’s happening.

Ashley  

For sure and here at The Mighty we, you know, I liked what you talked about with community because we understand that value of having a community, a safe space where you can share your highs and your lows and feel supported and understood by people who are having those same experiences you are. And for many people, if they don’t find that community, they might not, especially when we’re talking about rare disease, you might not ever meet another patient who has that same rare disease with you so taking that moment to find that community that can really understand your journey, especially right now in the world, where we are taking a lot of extra precautions, we all have to be distanced so we can’t meet each other in person, just finding those connections are so valuable.

Michele  

These times in going virtually, if anything, I feel more connected in this way to the community because I have the time and I make myself sit and have the time to tune into these. There’s, you know, the CLL Society is fantastic, but for me geographically, it wasn’t always close, but I can participate and Terry is so involved, I would love him to speak about that. But there’s another virtual support group called AnCan which is Answers to Cancers that meets monthly and that’s a great support group as well for blood cancers. So I have found all these different resources online that have credible information, it’s fantastic to learn about them.

Terry  

I think the online community has changed dramatically since I started. There are so many good online forums now. I’m just a patient and an advocate. I never met anybody for seven years that had CLL after I was diagnosed, and it was kind of a lonely journey, I will admit, and it wasn’t until I saw a post, you know, some people with CLL meeting in somebody’s house that turned out to be 10 miles from my house, and I wound up going and first time I ever met anybody with CLL. And I’ll tell you, it was really life changing to hear about their stories and ask them questions, which I had never really had a chance to do other than talking to my doctor, which, you know, in some ways you don’t, you know, feel all that comfortable, and maybe even asking questions, but you know, you may feel stupid, or you may feel like you know, you should know that. But in reality, you don’t know anything.

When you get first diagnosed with CLL it’s like they throw out terms and acronyms that are like a foreign language to you and it takes a while for you to even understand what some of these things mean. But I found that in a group of people that were patients and caregivers that they had all been there, they had all done these things. They knew how I felt about being alone, they knew how I felt about not understanding, you know, really, you know, the terms and the acronyms, and it was a real game-changer for me. I just can’t tell you how much the whole support system has meant to me, and, you know, made me become a better advocate, because I realized what I had missed during those first seven years. That’s one of the reasons why I am involved in the CLL Society to try to reach other CLL patients and help them along their journey.

Michele  

The CLL Society is a wonderful resource and as Terry said, in these meetings, of course in-person is best these days, virtual currently is best and will continue, I believe to have a lot of these meetings virtually. For me, I felt you know, I didn’t meet anyone for a few years either with CLL and the first person I met I had reached out to that I saw online and that was Andrew Schorr, a CLL Patient who was also had started Patient Power. It was the most credible resource at the time I could find online, again at the time, with great information and interviews about these top docs and the latest in information that was understandable as a patient, and it was inspiring. He became my community until I found other people through that and it was it’s like I found my tribe.

And it really is life-changing for you when you’re a patient of any cancer to find those who have your cancer and be able to speak with them on medical terminology and knowledge but also how you’re feeling and how it affects you emotionally. And that is a big component is the journey, going through it. There are dark days. There are others that are, I just heard with a patient yesterday, she has been in a trial and she is right now in complete absolute remission. I had to call her to celebrate, to commend her, like this is a huge accomplishment because it doesn’t happen that often. And it was very exciting. So you know, we all share lows, and we can share the highs as well.

Ashley  

I love that. We do have to wrap things up here so I just want to know if there are any final thoughts or what do you want people to take away from this this conversation today?

Terry  

I think if I was going to talk to a brand new CLL patient, I would tell them, number one, find a good medical team, find a specialist and get them on your team. I would say also educate yourself going to credible websites like Patient Power or CLL Society where they do have good vetted information. I would also say join a community of people that, you know have CLL, people that you can share your journey with.¬† Now, I’m not sure how long that will last, I mean it may not last forever. But right now I’m in a really good place even though I’ve had a rough time getting here. It’s amazing to me where I’m at today compared to when I started treatment 13 years ago.

Michele  

Terry, congratulations, we need to celebrate that.

Terry  

Thank you.

Michele  

Terry. I don’t know if you had given up hope on getting this but hope is my biggest thing that I promote with patients that there is such hope for CLL patients with all that is in research, all the findings that we continue to learn about and how they are treating this disease. Terry, you’re a fabulous advocate.

Terry  

Well, you know, the treatment landscape has changed so dramatically, just even in the last 10 years and now patients even have options for treatment, which basically 15 years ago, there was one treatment and that was it. And now you go in and you say, “Well, we can do A or we can do B or we can do A and B and maybe add C and the landscape is just so different. And the treatments, especially untreated patients, that you know the treatments are just dramatically successful in patients nowadays and it just is really amazing and truly can give patients hope for the future I think.

Ashley  

I love this final message, ending on hope. I want to thank everyone for listening to this episode of The Mighty Podcast. I also want to thank you both Michele and Terry for taking time today to share your stories with us. If you want to continue this conversation, head over to TheMighty.com or download The Mighty app to become part of our community. I also want to thank Pharmacyclics and Janssen Oncology for sponsoring this episode. Join us on our next episode, and stay Mighty.