Patient Stories Archives

Care Partner Profile: Mike Crocker

The first time Mike Crocker became a care partner was in 2016 when his wife Dr. Gerri Smoluk was diagnosed with Acute Myeloid Leukemia (AML). The second time was in 2020 when, after being in remission for four years, Gerri was diagnosed with leukemia again. The two experiences couldn’t have been more different, says Mike.

Gerri’s first diagnosis came shortly after she started a new job. Gerri, who had a PhD in biochemistry, worked in the pharmaceutical industry. She was feeling tired a lot, but she was brushing it off, blaming it on the stress that comes with a new job. However, Mike urged her to see a doctor, so Gerri had a coworker, who was also a doctor, check her out. The coworker sent Gerri directly to the emergency room. She was admitted and was in the hospital for 45 days undergoing chemotherapy. “She had a very severe case,” says Mike.

It was overwhelming to say the least, but Mike quickly took on the role of caregiver. He soon realized that the simple things were the most helpful. Mike made sure to bring Gerri some of the comforts of home. He made sure she had t-shirts and sweatshirts to wear instead of hospital gowns. He brought Gerri her laptop and yarn for crocheting. He brought her the few foods that she could actually taste after the chemo wiped out her taste buds. Mike was also her sounding board. He listened as she talked through her care options and how they would affect her quality of life. He was simply there for her, walking with her daily so she could get some exercise and maintain circulation, so she didn’t have to stay in bed with the compression sleeves on her legs. “I did all the little things that could help her be a little more in control and have as close to a normal day as possible,” says Mike adding that Gerri’s background in biochemistry and the pharmaceutical industry gave her unique insight into her care. “She started charting her tests and data so she could be a part of the solution and have informed discussions with doctors. She wanted details and wanted to know what to expect.”

Mike and Gerri learned that patients and care partners are given overwhelming amounts of information and that they have the responsibility of learning all they can and asking questions and making decisions. He says that doctors aren’t always keeping up with the latest research and that it is easy for them to get stuck in routine treatments. He found that doctors talk about options based on their experience and their skill set, but that doesn’t mean that approach is best for the patient. He says that being comfortable with the doctor and getting a second opinion if wanted are also important. He and Gerri learned to be active participants in her treatment and care.

In addition, Mike and Gerri were always looking ahead and focusing on the future. He concentrated on keeping her spirits up. When she was bald from chemo Gerri was looking at wigs and Mike says he encouraged her to go wild and get a bright red wig. “She didn’t go for it but being outrageous and adding humor to the moment was a way for me to help,” he says.

It was while she was in her fourth year of remission that Gerri found Patient Empowerment Network (PEN). “Gerri liked PEN’s focus on making the information understandable for patients, giving them easy-to-digest information to make decisions,” says Mike. Gerri jumped right in and helped to develop the Network Manager program which launched in March 2020. The program is made up of volunteers around the country who use their own patient experience to support patients and their care partners through their own cancer journey and on to a path to empowerment. “PEN is very important because it is patient-focused,” Mike says, and that’s why PEN appealed to Gerri. She liked that she could use her scientific background to help patients understand the information and to make sensible decisions for themselves. Gerri served as the AML Network Manager and was named a finalist for the 2020 Reuters Patient Champion Award in the Patient Advocate category.

Then in July 2020, Gerri got her second diagnosis. She celebrated her birthday July 7 and a week later, Gerri was back in the hospital. “This time she had a second type of leukemia which threw doctors for a loop,” says Mike. “Usually when leukemia patients relapse, it’s with the same type of leukemia.”

Although they had been through a leukemia diagnosis before, this experience was nothing like the first. “It was very different. It was during covid so of course, unlike before, when she could have friends drop in, she no longer could have visitors. Everything was more restrictive with covid,” says Mike. “At least I could be there every day.”

This time, Gerri and Mike were not expecting a longer hospital stay. They were expecting outpatient treatment that would be easier, and they were looking forward to time away from the hospital. The first time was so scary, but this time they were experienced, and they knew what to expect, but what they expected is not what happened.

After about a week Gerri got worse. Doctors were trying to figure out what was wrong, but they were unable to save her. Gerri died July 27, 2020. The autopsy revealed she had an antibiotic resistant bacterial infection.

More than a year later, Mike says he’s doing okay. “Everyone handles it differently,” he says. “You have to give yourself permission to not be happy and also give yourself permission to keep going and find other things to fill the hole.” In September 2021, he retired from his career as a web project manager, and recently he reached out to PEN looking for a way to use his skills to help others. “Gerri was the driver, so now I’ve been drifting,” he says. “That’s why I contacted PEN. I wanted to do something of value.”

Mike will be an invaluable addition to the PEN network of volunteers.

CLL Patient Profile: Allan Rosenthal

When Allan Rosenthal shares the story of his chronic lymphocytic leukemia (CLL) journey, you can tell that he didn’t let the word cancer hold him back. Affectionately known as “Dr. Pickleball” by friends and colleagues, he led an active lifestyle when he was diagnosed and continues to live an incredibly active life with CLL. Right before he was diagnosed in 2018, Allan noticed when he was playing doubles tennis with some men younger than him, he just couldn’t keep up with them. This unusual experience of a lack of energy spurred him to see his primary care doctor. Yet his diagnosis wasn’t a typical diagnosis – far from it. He works as a podiatrist, and his internist helped him to decipher the diagnosis.

After a laboratory blood test came back, it was revealed that Allan’s white blood cell count was elevated. His primary care doctor actually misdiagnosed his symptoms as an infection and put him on a round of antibiotics. And after his usual internist returned from vacation, he thought right away that Allan had CLL and sent him to see a hematologist/oncologist. As Allan remembers, “My doctor said, ‘You’re not going to die from this. You’re going to do the watch and wait or watch and worry.’”

Like many cancer patients, Allan’s diagnosis brought concerns beyond his health. “I was worried about the financial burden. Through organizations like PEN, my oncology unit, and the social workers at my hospital I have received help.” A nurse from the pharmaceutical company also calls him every month or two to just check to see how he’s doing in terms of both physical and financial concerns.

As a physician, he’s well aware of patients’ ambiguity with their care, and it’s always good to gain knowledge. Allan has recommendations for other patients, “It’s good to have someone with you at appointments. My wife is a nurse practitioner and is also a former oncology nurse, but it’s still tough to keep up with all the improvements going on in the field of CLL.”

Allan was diagnosed in the spring and was fine until later on that summer. The lymph nodes in his neck started to swell, and he went to his oncologist who informed him about the medication ibrutinib (Imbruvica). Allan says of starting his CLL treatment, “I remember taking the medication on a Friday and then going to play golf the next day with a friend. Pretty quickly I had the energy I used to have. Now I play pickleball, golf, platform tennis in the winter, and I ski. I just bought a Peloton bike during the pandemic that’s really helped me. I have no side effects from the medication. I’m living my life.”

As for his CLL treatment, he thinks of ibrutinib in the same way that someone with diabetes or hypertension would take medication for a chronic condition. His CLL medication has allowed him to live with CLL as a manageable condition rather than dealing with common side effects that many cancer patients deal with. Allan has also learned that educating himself about CLL is vital even for someone with a medical background. He’s experienced the value of patient education. And after he learned about the Patient Empowerment Network (PEN) from his oncology team in Connecticut, Allan shares, “I also know from PEN that there are other medications if this doesn’t work out. And I’ll go from there. PEN is keeping me educated to the fact that there is ongoing research, and there are other avenues; it’s not a death sentence.”

When he was first diagnosed, despite his and his wife’s medical backgrounds, Allan felt scared and depressed. He spoke with a friend in the medical field who said, “My father and uncle have CLL. If you start fretting about it, I’m going to wring your neck. They’ve been living with it for years, and it’s not that big of a deal.” He’s since come across more and more people in his life living well with CLL thanks to their efforts to become educated and proactive in managing their diagnosis, which continues to encourage him.

Allan credits PEN with helping him in his CLL journey, “PEN has educated me further along than if I went at this alone. Dr. Google is not exactly the best source of information, and Dr. Facebook isn’t a reliable source either.” Allan looks for reliable sources, “PEN is where I can get questions answered and get the proper answers from knowledgeable people in the oncology field.”

During his CLL journey, Allan has received valuable advice from others and is now happy to be in a position to help other CLL patients. His advice for other CLL patients? “Live your life. Be active. Staying active helps tremendously. And don’t panic. Everybody has the tendency to go crazy. It’s the big C word. I was scared also. I didn’t know what this was all going to mean. But as my oncologist told me, ‘You’re not going to die from this. We can take care of it. Just don’t panic.’”

Lung Cancer Patient Shares Top Tips for Utilizing Telemedicine

Lung Cancer Patient Shares Top Tips for Utilizing Telemedicine from Patient Empowerment Network on Vimeo.

Stage IV lung cancer survivor and nurse Gina has taken advantage of telemedicine opportunities in her care. Watch as she shares her perspective about the benefits of telemedicine and her hopes for the future. In Gina’s words, “..no matter where they are in the world, I don’t think that where you live should determine if you live, I think everyone should have access to the very best care…”

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Transcript:

Gina:

When it comes to telemedicine, I think that we have to think of it as an adjunct to care, so it wouldn’t replace your actual care with your doctor, and so I think that utilizing telemedicine would really just be kind of like getting a second opinion, getting somebody else to look at your case, and it would have been an opportunity really for you and your community doctor to work with an expert in the field, wherever, whatever disease state you’re being treated it with, and I think that’s one of the silver linings of COVID that we can use, so it wouldn’t necessarily be that telemedicine is taking over your care, but it’s really just an adjunct to your care. So, you would still be touched by your doctor, you still would be assessed by your community doctor, but that community doctor would be leaning on the expertise of the doctor in which you’re getting a second opinion or you’re consulting with…so I think that’s the way that we have to think of telemedicine and diversifying and really making sure that everybody has access to the best care, it’s not really in placement of your normal care, but just an adjunct, so in addition to your care. 

One thing that I really hope that we can benefit from is…I hope that we can really learn from COVID. We learned that really there is a disease that is not defined by borders, and so I hope that we can use the opportunities and the things the way that we were, so I guess we persevered in spite of a disease, I hope we can use that for clinical trials to and so what I mean by that is I feel like the silver lining of COVID was telemedicine, and we were able to provide telemedicine to patients no matter where they were, no matter how they felt, they were able to have the best of the best care right in the comfort of their own home. And so one of the things that I actually personally benefited from was because of COVID, telemedicine was open up everywhere, and so I was able to actually get care from some of the best ALK cancer experts in Boston through telemedicine, and so I wasn’t actually required to travel to Boston instead, I could meet with that doctor by Zoom, and sadly, once the COVID mandates were lifted, that hospital was no longer providing telemedicine, so I was getting this great care, this expert advice in my disease process, and all of a sudden it was stopped, and so I hope that one of the things that we can do is figure out ways to utilize telemedicine to really bring the best care to patients no matter where they are in the United States or really…no matter where they are in the world, I don’t think that where you live should determine if you live, I think everyone should have access to the very best care, and I think it can be delivered through telemedicine.

MPN Patient Shares Advice for Making the Most of Telemedicine Visit

MPN Patient Shares Advice for Making the Most of Telemedicine Visit from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm patient Debbie has had the opportunity to utilize telemedicine in her care. Watch as she shares the pros and cons of telehealth methods in her blood cancer monitoring and her advice to other patients for optimizing virtual visits.

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Transcript:

Debbie:

I think there is definitely a place for telemedicine in our care. It has enabled us to, or enable me to keep in touch with my hematologist and to understand where my blood counts currently are. What I would also say is, it’s…that there are positives and negatives. I think that the positive of it is the fact that I’ve got a regular update on what my blood counts actually are. I think the negatives of it can be, is that it is quite easy just to move the conversation quite quickly forward. It’s easier for me to just say, everything’s all okay. Thank you for updating me over the telephone, then it is perhaps if I was actually sat in front of somebody.

I think that the challenges it presents is that personal touch, is that feeling of being able to have a one-to-one relationship with your consultant. I don’t think you have that over the telephone.

So, some of the tips that I would share are that you keep in regular contact with your hematologist, you keep regular information on your blood counts, but you keep in a very, very safe environment. You do keep in a safe environment, and that I think is something that’s enormously important. A tip that I would probably give is that make sure that in between your appointments, you do what you would do regularly on a face-to-face and make notes of the things that you want to talk about…because I quite often put the phone down and think, I wish I had said that when I go to the hospital, I will have my notes in front of me and I put them on the table, and I’ll cross-check them with the hematologist at the time, I tend not to do that on the telephone, and perhaps I should, so I would definitely recommend that you treat the tele appointment exactly the same as you would the hospital appointment.

Lung Cancer: Gina’s Clinical Trial Profile

Lung Cancer: Gina’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Lung cancer survivor Gina was shocked after receiving her diagnosis at age 38. Watch as she shares her lung cancer journey including her diagnosis, treatment, clinical trial experience, and advice to other patients. In Gina’s words, “So what I’ve learned is that clinical trials are really the best and newest care for patients, and I feel like all patients should have access and have the experience of a clinical trial.”

Patient-to-Patient Diverse Lung Cancer Clinical Trial Profiles

Transcript:

Gina:

My lung cancer story is probably not that unique. There are actually a lot of people that are just like me. I was 38 years old, a nurse at the peak of my physical health, and I was actually training for a triathlon. And I just developed a cough, and no one would take me seriously. As a nurse, I felt like something was wrong because I was losing weight, and I wasn’t trying, and eventually I had to self-pay for a chest X-ray, and the chest X-ray showed that I had something going on in my left lung, but they weren’t really sure what it was. So, I took that chest X-ray to the emergency room for exactly what they tell you not to — a cough, and thankfully, the ER doctor took me very seriously and finally that led to a stage IV incurable, inoperable lung cancer diagnosis. As a nurse, I knew the severity of, of the diagnosis, and I knew that also there was a possibility for some new drugs, and so I’m so thankful that my doctor in Memphis knew to do biomarker testing, he found out that I was ALK-positive (anaplastic lymphoma kinase). My very first thing that had to happen was I had brain surgery.

And I feel like I’m a very lucky girl to have survived all that I have, and I watched the pain in my husband’s eyes as I rolled back from brain surgery and the f as I woke up from that brain surgery. And then the next thing was my left lung was removed, and I remember seeing my two boys and as I rolled back, how they were afraid for me to lose my lung, something that they felt like I needed. And so again, we experienced so much joy as I came back from that lung surgery and eventually recovered, and then I remember the first day that I actually was able to run a mile again, and that was so incredibly exciting for me. So now I was diagnosed in 2015, and now it’s 2021 and through the years, I went through each targeted therapy and cancer outsmarted it, and so the targeted therapy failed me eventually. And each one lasted about a year or so, and I think that through these years, I kept thinking that science would keep up with me, and I kept riding that wave of science and research, and I was so thankful. But we knew that it was incredibly important to continue to fund research for lung cancer, because when it comes to lung cancer, it seems like even though it’s the number one cancer killer of men and women and anyone with lungs can get it. The funding for it is so low because there’s still a thought process that smoking is the cause of lung cancer, and while we know that there’s a lot of people that are just like me who have absolutely no risk factors, we know that research is incredibly important for this disease. So, fundraising for lung cancer research and through our group, ALKpositive.org was incredibly important for me.

I just kept hoping that the next thing would happen, but I finally ran out of the last targeted therapy, and so that’s when I started looking for a clinical trial. And right now, it’s not that easy to find a clinical trial. Within our group, we have some amazing volunteers and members who really work to put the clinical trials out there for ALK-positive patients and to make sure that we know that we’re aware of them. And so anyway, I had a great friend who helped me look through the clinical trials, and eventually I found the perfect clinical trial for me. But it required me to travel to Boston, Boston quite a bit, and so that was really difficult raising two young boys and having my husband, who is also working, not be available. It was just really not fitting with our family to be able to travel and be away from my family so much, so I kept looking for clinical trials, and I finally found one that was about 200 miles away. And it still requires me to leave my family about every two weeks or so, sometimes just for a blood draw, but I’m so incredibly encouraged, because we found out that the clinical trial of this combination drug is working, and we found that cancer though it had kind of spread everywhere in my body, in my brain and in my pancreas, and even around my pulmonary artery, all of the cancer had decreased by about 50 percent. So, I’m incredibly encouraged, and that’s where we are now in the journey, and we’re just going to hope that the clinical trial keeps working and that new options are coming down the pipeline for other lung cancer patients.

A clinical trial is something that has, my perception has completely changed about. I thought when I was first diagnosed, a clinical trial was kind of like being a guinea pig, and now I think that it’s more like being a pampered poodle. So, what I’ve learned is that clinical trials are really the best and newest care for patients, and I feel like all patients should have access and have the experience of a clinical trial. We know that sometimes clinical trials don’t always pan out to have the best thing, but I see over and over again that clinical trials for patients have a lot of science behind them, and it’s an opportunity for patients to try the latest and greatest.

If you’re considering a clinical trial as an option, the most important thing is for you to become informed, really make sure you understand some clinical trial, really understand what the expectations are of you, and make sure that you’re willing to do what’s required of the clinical trial, make sure, that also that it’s conducive to your lifestyle and to your family. I think those are the things that are the most important. A clinical trial is an opportunity for the latest and greatest, but you also have to make sure that you understand what’s required and make sure that you are okay with the requirements of the trial.

If I were to tell you how I’m feeling today, I would tell you that I’m feeling encouraged that I have so much hope for the future. Being a part of a clinical trial has…honestly, if I’m very, very truthful, it was scary at first. In fact, I even cried when I signed the clinical…the clinical trial consents. It was completely scary, but now that I’ve been into the clinical trial now about nine weeks, my last scans were really good and really promising, and so for me, I feel very, very hopeful for the future, and I’m hoping that this is a drug combination that can be brought to other patients and that they can all benefit from this clinical trial and from my experience.  

My Journey of Living With a Myeloproliferative Neoplasm for 30 Years

My Journey of Living With a Myeloproliferative Neoplasm for 30 Years from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm patient Nona was shocked after diagnosis with two MPNs – essential thrombocythemia (ET) and polycythemia vera (PV) – at the age of 41. Watch as she shares her MPN patient journey over 30 years. Nona’s advice to other MPN patients, “Use your voice, you are not alone, make sure you establish a good relationship with your care team. You are truly your own best advocate!”

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Transcript:

Nona:

My name is Nona. I live in West Sussex, England. In 1991, I was diagnosed with essential thrombocythemia (ET) and then polycythemia vera (PV) in 1995, both myeloproliferative neoplasms (MPN). This came as a big surprise to myself and my husband. At the time, my care team said there were only 12,000 known patients in the UK living with my condition. At the time of my diagnosis, I was 41 years old, a wife, and a busy mother to three children as well as having a part-time job.

Prior to my diagnosis (with symptoms of painful feet, ulcers on my toes, and chronic tiredness), I was seen by three different clinicians. One doctor told me that my blood work had suggested that I had an alcohol issue and that I was somehow in denial. That really scared me, as I hardly drink alcohol. My research led me to nowhere at the time, as there was very little information about MPNs available. At that point in time, they were called blood disorders. When I read the leaflet with the prescription medication, it referred to treatment for cancer.

I went back to my primary care physician as I really felt very frightened and confused. I learned that MPNs were a proliferation of the blood cells, but not cancer in the conventional sense of the word – in other words, a chronic treatable disorder. Having lived with an MPN for over 30 years hasn’t always been an easy journey. But over the years, a more accurate early diagnosis and treatments have progressed beyond belief, and for that I am grateful. I have never forgotten the difficult feelings of anxiety and fear when I was first diagnosed.

In 2005, I had a second opinion from a respected MPN expert who started a charity, now called MPNvoice. The mission is to provide up-to-date, accurate information to both the medical and patient communities. I have been fully involved with the charity since then and now serve as co-chair reaching out to patients around the world.

My advice to other MPN patients: it’s important to remember everyone’s MPN journey is different and some patients struggle with more symptoms than others. Don’t let your MPN become your life if you can just see it as part of your life so that you can get on and live your life. Use your voice, you are not alone. Make sure you establish a good relationship with your care team. You are truly your own best advocate.

These actions are key to staying on your path to empowerment. 

Lung Cancer: Donna’s Clinical Trial Profile

Lung Cancer: Donna’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Lung cancer patient Donna had a sub-optimal experience with her first treatment regimen. Watch as she shares her lung cancer journey, knowledge and benefits gained from a clinical trial, and her advice to patients seeking additional treatment options.

Patient-to-Patient Diverse Lung Cancer Clinical Trial Profiles

Transcript:

Donna: 

I’m Donna, I am 68 years old, and I was diagnosed with lung cancer in 2012. 

When I was first diagnosed with lung cancer, I was put on a regimen of paraplatin (Carboplatin) and bevacizumab (Avastin) drugs. I received that for four or five months and did not do particularly well on it.  My body did not react well to those chemicals, my tumors, however, did respond as long as I was getting the drug. 

After we discovered that my tumors were not going to respond to chemo unless I was getting it all the time, my doctor suggested that I either go on another drug, chemo drug that was even harsher than what I had been on and did not have as good of results or suggested that I might do a clinical trial. I had been told that I probably only had about four months to live. And I decided that, number one, I was in no hurry to be sicker than I already was and number two, that if there was a way I could help future patients by participating in a trial that the trial was the way I wanted to go. I never ever assumed that I would benefit from being in a clinical trial, I was very uninformed about clinical trials. 

A clinical trial is a way that the pharmaceutical company or researchers test certain drugs. They will see if the drug works at all, it moves to humans and out of the laboratory, and everything doesn’t necessarily work the same way or on humans as it did in the lab. So…in the Phase III trial like I was in, by that point in time, they’re learning how in the fairly general population, how the drug is going to react, if it’s actually going to work, how much of a dose is the right dose, and how frequent it should be. The clinical trial is just to provide the information that’s needed to determine whether a drug should go forward into the general population or not.  

One tumor started growing again, and I chose to have radiation, which made me have to get out of the clinical trial. But after radiation, I went back onto the same drug that we had been testing through the clinical trial, because I had responded so well through it, and I stayed on that drug until from 2013 until 2019. And during in April of 2019, I quit having any kind of treatments, and so now I’m just monitored every four months to make sure that my tumors have remained stable and so far, so good. 

I would go into a clinical trial without hesitation if my tumors begin to grow again, my first consideration will be to get into another clinical trial, you are getting the cutting-edge drug. And not only that, while I was in the clinical trial, I had a researcher and I had my oncologist, I had a lot of people really following my health. I had multiple, far more scans done, which some people might look at as a negative, but they were really following me closely to make sure that my response was what it needed to be. You can get out of the clinical trial, you are not stuck in a clinical trial. So, if you get into it and you are either sick or if your tumors are not responding the way you hope they would, you’re not stuck in a clinical trial, and that’s an important thing to know. To me, there will never be another option that I will consider first, I will always consider the clinical trial first. And because I felt that the quality of care I got was higher, and it also saves you a lot of money because at least the drug itself is going to be provided at no cost. 

So that’s a huge consideration too. 

I would not be afraid to look into clinical trials, I would never accept a doctor telling me that there were no options for me. I have friends who had doctors tell them that they just didn’t think there was anything more that could be done, they needed to go into hospice. My advice is to look for a different doctor, because that’s not always true. And clinical trials are not necessarily easy to find, but I would certainly do my due diligence and look into whether there is one that’s good for you. And I would also strongly recommend that you immediately go through genetic testing so that you know what kind of mutations you might have, because that will drive the kind of clinical trial you might be wanting to get into, and also just the treatment in general. 

Advanced Prostate Cancer: David’s Clinical Trial Profile

Advanced Prostate Cancer: David’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Prostate cancer patient David received a diagnosis at stage IV during a routine PSA check. Watch as he shares his prostate cancer journey, his experience with clinical trials and treatments, and his advice to other patients about lessons learned about prostate cancer side effects and the impacts of clinical trials.

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Transcript:

David: 

Hello, my name’s David. I am 58 years-old.I was diagnosed in 2016 with prostate cancer, I had no actual signs or symptoms of prostate cancer, it was only found due to Army doctors, I had something wrong with me, which had nothing to do with the cancer. They did a PSA check, and my PSA came back at 1050, where it should be around 0. From that I then got sent to a local hospital where I had tests, I had biopsies to open my prostate, which found out I had stage IV prostate cancer. 

From there I got asked would I like to go to the Christie County Hospital in Manchester, UK. From there, they offered me the trial called the STAMPEDE trial. This trial was used in different procedures, which is already around, we use them together to try and extend people with prostate’s life. I got to turn the arm where it was also attached with chemotherapy, followed by 20 sessions of radiotherapy. This happened over three, four months, which after that brought my PSA down, but only to round 20 odd. From this after a couple of months, my PSA started to rise fairly quickly. I then got put onto the drug called bicalutamide (Casodex). This lasted a couple of months, because my cancer is so aggressive, it started to grow. I then got put onto another chemotherapy, cabazitaxel (Jevtana). After my first session of the cabazitaxel, I then got a CT scan and from this we found out the growths were still growing. 

So after this, I then got put on a drug called abiraterone with [inaudible] which is a stand-only. I was on this for 22 months, which was very good, it brought my PSA down to eight, which is as low as it’s ever been. Like I say, it lasted 22 months, but then the cancer started to come back quite a bit, so my oncologist actually said there’s no actual normal treatment left for me, and asked would I like to go on to trials, clinical, a first stage clinical trial, right away I said yes. My first clinical trial was a Carrick called Carrick, this lasted six months, but again, the cancer started to grow again, so I came off of this. I then have four weeks, no trials at all. It’s what called a clean-out where you can’t have any drugs at all in between trials. I then went on to what was called task 368-1, this lasted longer which lasted seven months. That again, the cancer starts to grow again. So, then I got on this one called CellCentric For the the CellCentric trail, they put you back on to abiraterone, which normally you don’t, wouldn’t take past one to two months… for me, it’s carried on working again. It’s now on seven months of working until it stops working, I can’t go on the new drug called CellCentric. 

For me, this is cool because it’s still working, the old drug, and it’s a very…let’s say there’s not a lot of side effects except for what steroids [inaudible]. So at the moment, we’re just seeing how it goes. I have scans every eight weeks, a CT scan and a full body scan from each time they come back, they then decide what’s happening next…and that is my journey up to now, which is five-and-a-half years later. 

With the clinical trials, I feel really good at the moment, because as I said, the trial [inaudible] and abiraterone (Zytiga) is not a drug that causes a lot of side effects. Through other trials have been, they are very intense, and that’s what they always warn people, which are overnight stays when you first take the drugs, so they are very tiring, you have to have blood done overnight all the way through the night, you get BCGs to make sure your body is not reacting to the drugs, and then the side effects of the drugs after.  So, they are very intense, but also, I am still here, I did not expect to be here. October, this year October I got told I would not be here three years ago, so it shows what clinical trials can actually do for you.  I’m still here, I still live a very good life. We go walking, the wife and I quite often, and we did three, four-mile last night, and we just enjoy our lives. 

People don’t realize…a lot of men don’t talk about it the physical side and the sexual side of prostate cancer, the treatment, because your libido to go, and it just causes a [inaudible] of your testosterone. You don’t feel like…and it’s a closeness that you lose… Amanda’s been unbelievable, she’s been there for me all the way through. She’s my rock, she’s the one went down down, she pushes me, but then she has days where she’s down. And this is where people need to realize the partners will improve the encounters much as the patient. And this is some of them we talked about…we’re very open about people where we talk about it. We have our days, the last couple of days I’ve been down. But she’s there to try and help me get back, and I try and do it for her when she is…and the family is the same, having the family support, when I’ve been to appointments, I get phone calls, quite a few, I get messages how are things going. And it’s just nice knowing that people do care, we have friends who keep in touch all the time, make sure everything’s okay, and you need that support of your family and friends. 

It’s very important for them to be there with you. 

The clinical trial to me is drugs that normally are not being used on humans before. They’ve only been tested in the laboratories. So, the first stage is a dosage stage where they check in and see what a person can actually take…so different people have different amounts of the dose.  And then from there they go to the expansion stage, and that is when they bring more people, and they know what dose to give people. Well, it’s to find new drugs, which can help other people in the future, as well as myself…I always say to myself, “This could help someone in the future, live for longer, stay longer with their family, be there longer.” It’s helping me other months, as I say, but it’s also to help other people in the future, something that’s not been used with people before.  

What I would say to other people who are thinking of going on clinical trials and the families is go for it. They are done so carefully, you’re checked all the time, your bloods are checked, your health is checked, your [inaudible]. It’s something that you can stay longer with your family. There could be cures in the future with this as well, no one actually knows, and it’s something people should not be scared of doing. Like I said, I’m on my third trial, and I will keep on going, I know there are more trials for me after this. And I will keep on going. 

Advanced Prostate Cancer: Gary’s Clinical Trial Profile

Advanced Prostate Cancer: Gary’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Advanced prostate cancer patient Gary was an athlete in the first Oncology Olympic Games in Rome. Watch as Gary shares his prostate cancer journey, benefits and knowledge he’s gained from clinical trials, and his advice to others considering participating in a clinical trial. 

See More From Patient-to-Patient Diverse Prostate Cancer Clinical Trial Profiles

Transcript:

Gary: 

My name is Gary, I’m 66 years old and in January 2011, I was diagnosed with stage IV metastatic prostate cancer. 

I started my journey after the diagnosis, It was quite hard to take because I didn’t have symptoms, and it was a complete shock, and I found out by accident by being in hospital with pneumonia. When I found out, the team came around to talk to me, and they said there are lots of things open to me, like new medications, chemotherapy, radiotherapy, and clinical trials. So it started off very positive, and that made me feel positive about it as well. I started off on hormone treatment and my PSA over a few months went down from 255 down to 12. In October of that year, I started on an infusion every four weeks to strengthen the bones and stop osteoporosis. So that was an important move. Then my PSA started rising again, it crept up to 83. So I was only on hormone treatment, and that was when they offered me the PREVAIL trial. I looked up on the Internet about the trial when it was a trial that was known as MD-310 at the first stage of firm tests in America, and then they were rolling out the stage two tests, so I discussed it with my family. 

And we decided it would be a good move. And so I signed up for the clinical trial, and I started the trial on the 23rd of December. Being a 50/50 placebo versus drug, I didn’t know whether I was going to be on the drug or not. Come the new year after of couple of months, I started feeling better and my PSA started going down again. I felt more energetic and my consultant agreed with me when I said I thought I was probably on the drug because there’s a difference. It actually was the one thing that I’ve done that changed my life because I had a future, I felt better which I was a bit worried about doing because of the prognosis when they said it was up to two years depending on if I go to a good treatment. And the longer I was on the drug, the better I felt. I had side effects. I was clinically castrated by the drug, because it cuts off all the testosterone apart from that. 

I had a very, very good life. My wife and I’ve been married since we’ve been 19. We got married in 1974, and we’re solid as a rock. She is my rock all the way through this. Sometimes it’s harder for her, I think, than for me, because she’s watching what I’m going through. But after I’ve been on it for so long, we got really confident, and life was completely normal. And then came my first grandchild in 2014, and closely followed by the second one, two years later, and then the third one last year in lockdown, and they have made it such of my life such a joy. So I’m so thankful for deciding to go on a clinical trial. I would recommend clinical trials because you’ve got the basic treatments, but clinical trials can make a big difference, because although they are not tested drugs they’re probably the drugs of the future. 

And you can get on the ladder early and be on these drugs, and instead of giving it…giving me about three years, it worked for nine years. So it gave me nine years of worry-free life. I’ve had my ups and downs, I had some phases of [inaudible] radiotherapy here and there, but it was…it really did make a massive difference to my life. And I don’t think if I hadn’t gone on that clinical trial, I don’t think I would have been here now.  I relish every single minute I’m here and if another clinical trial, that would suit me came up tomorrow, I would definitely think about going on that one as well.  

Advanced Prostate Cancer: Willie’s Clinical Trial Profile

Advanced Prostate Cancer: Willie’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Prostate cancer patient Willie was diagnosed in 2021 at the age of 65. Watch as he shares his prostate cancer story from diagnosis to how he’s doing today, his experience with a patient navigator and a clinical trial, and his advice to both Black men and to all others with prostate cancer.

See More From Patient-to-Patient Diverse Prostate Cancer Clinical Trial Profiles

Transcript:

Willie: 

My name is Willie. I’m 65 years old. In 2021, I found out that I had prostate cancer. 

 I would like to explain about the experiment that I went through in prostate cancer. Some that was, I was afraid of because that word cancer and that word to me, out of all my life, I done heard that, all I thought about was death. It kills you. You’re not going to live. And I was trying to find out where and how I got cancer, and I didn’t get no idea until I was able to sit down, talk with my navigator and what procedure I would have to go do in order to help me with my cancer. So they gave me some choices. One I didn’t like because I had to be hung upside down for four hours, and I didn’t think I can do anything like that at my age. And next, they told me cancer, radiation, and I was scared of that because it was like burning fire. And I had seen other people how it done them and their skin, and it put fear in me. So, I decided to go and talk to my doctor. 

I want to be healthy. And when I started my cancer treatment, it was the scariest move. When they put a gown on me and laid me on that bed, they put these machines on me, and I had to lay there, and they mark me where they want to set it up, or where the cancer was at, they’re going to do the radiation. I didn’t understand it. I really needed help in my house, I was so sick, I own a bed, it’s a pull-out bed out of my couch. So I went to a bag, a bean bag to be able to lay on each and every day I was just under that much pain, and it was miserable to me, and I kept on working on it. I didn’t want my hair to be falling out. I didn’t want my body to be deformed all that was on my mind, and I decided to go and do this radiation. And now I can tell anybody I know it’s scary, I have experienced it, but it’s really after you get done with it, you’ll be so happy that it makes you feel like you were one time before, you’re back to your normal, you’re you. 

My reason to take the clinical trial, because I had fear in me about prostate cancer, and I did not know where and what it would be like of carrying this. So I had in my mind that I wasn’t going to do it. I couldn’t sleep at night. You know one…and how is it going to, how is this cancer going to hit me? I’m laying in the bed, “What’s it going to do? What should I do? How should I sleep to keep from worrying about me and this cancer?” I’m running back and forth to the bathroom, couldn’t eat and appetite gone and I got to the point, I’m going and take this test. So I called the navigator and he and I discussed this, and he convinced me.  

A clinical trial to me is the work of getting you with your prostate taken care of. I experienced a lot of goodness after I realized what this was really about.  The clinical trial, it really made me happy to be a part of it because I just didn’t believe that after learning about that word cancer, I’d feel good. I’d feel like I ain’t got the cancer, and that’s what that clinical experience showed me, and made me feel like. So, I’m happy with it. 

My advice to men, especially Black men, I advise them to check themself, your whole body, you need your health taken care of, if you want to be able to be out here and live with this prostate cancer. One thing I do know about Black men, they are afraid when it comes to taking care of themself as though they can look in the mirror and see all about themself and tell you whether there’s something wrong or not, but you can’t do that. I advise all men, not just only Black to take time out, talk to your provider. A lot of us got it, and we don’t even know we are carrying this around with us, but you like to go out and have fun, smoke your cigarettes, drink and do all your partying, but you’re still carrying that death weight on you. We don’t need that cancer, prostate. And I would advise all men, take time out and check yourself out, because it’s a good thing in life to do as being…want to be here on earth amongst other good men. And I would like to say, please do this, I’m a living witness. 

Look at me. I feel just the way I look and I’m serious to tell you to take that time out for yourself. 

Triple-Negative Breast Cancer: Sharon’s Clinical Trial Profile

Triple-Negative Breast Cancer: Sharon’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Breast cancer patient Sharon was diagnosed with triple-negative invasive lobular carcinoma after she found a lump after working out. Watch as she shares her breast cancer journey through two stages along with treatment – and what she learned and experienced with clinical trials and her advice to other patients. In Sharon’s words, “I do think that patients should be given all of their options upfront. I don’t think that clinical trials should be the last resort.”

See More from Patient-to-Patient Diverse Breast Cancer Clinical Trial Profiles

Transcript:

Sharon: 

I found a lump after I had been working out. I kind of blew it off, I thought it was a muscle strain. I kind of went about two to three weeks just icing it. I asked my mom a couple of questions like, “Hey, have you ever had this type of pain?” She’s not an avid exercise individual, so she had no clue what I was talking about. It had become unbearable. My right breast, it became swollen. It was extremely swollen, red, very, very firm, and I knew that I needed to go into the doctor to see what was happening. So I visited my PCP, from there, I was told to get a mammogram, it was authorized. After that, I needed to have the tissue sampled to determine what the problem was. So, I received the phone call at work, and it was very disturbing, very distraught, I had found out that I was triple-negative breast cancer stage III at the time. From there, I immediately went into chemotherapy that included 16 sessions of chemotherapy followed by a right mastectomy. I opted for reconstruction. At the time of reconstruction, we went in and decided that we would do an expander, and that lasted about six weeks. Then I developed a staph infection, so the expander needed to be removed, so that was before I had a chance to receive my post-mastectomy scans. 

 So there was a large time frame which I was not having chemotherapy, and I had not received my scans. I was diagnosed in May of 2020 with stage IV. The cancer had metastasized to my liver, spine, and bones. Then the new care plan was to be placed back on chemotherapy, a different regimen, something a little bit stronger, since triple-negative is one of the strongest types of breast cancer.  

I felt like I did not have any additional options. I had tried what my oncologist deemed to be the most effective chemotherapy at the time. I was doing research in terms of holistic healing, different I guess, vitamins, fruits and vegetables, or changing my eating habits, removing sugar. So all of the life hacks that you kind of Google yourself which is something people should not do, so I tried that approach. And my oncologist said, “We might need to look into clinical trials.” It was definitely something that I did not hear throughout the initial process, which was kind of a bummer that that information wasn’t provided. I definitely think that my decision-making process would have been a little different had I known about them. So, we had tried all of the chemo therapies that we could, all the targeted therapies, and I am triple-negative, so none of my receptors allowed me to do the oral chemo or any of the hormone therapy. So I couldn’t do that. And so the option they tried for chemotherapy that was being tested was given, was provided, and I did a little bit of research on my own. I asked around in different support groups that I attend to see if anyone had heard of this trial drug. And from there, I decided that since the other options were not going to work with the type of cancer that I had then the clinical trial might have been the next best option. 

 I just recently celebrated one full year of living with stage IV… And I guess that’s a big to-do, because the scary stats online, they say that once your cancer has metastasized, you typically have 12 to 18 months of life expectancy. So, I’m passing that mark, I’m doing well. I am currently on a new chemotherapy regimen, and I have chemotherapy two to three times a month with a couple of breaks in between. I’m definitely a breast cancer advocate. I like to share my story to encourage others. I know it can be very overwhelming to kind of live with this disease every day, along with the anxieties that come with it. 

I was not familiar with clinical trials, I have had three oncologists, and I did not hear about them until my third oncologist, which is very scary. I do think that patients should be given all of their options up front. I don’t think that clinical trials should be the last resort. I think that patients should have…kind of be empowered to make the decision as for them, and the option for clinical trials should be shared. They should be a part of the care plan if the patient decides that it’s the best thing for them. I decided that it was best for me because there were not many…there were limited options available for me. And I think that had I been given the information earlier, I would have done some additional research to see what other people have been doing and are doing in terms of research, especially as it relates to clinical trials. One of the questions that I asked during the initial process was, “Were there other women of color on this particular trial, and have they seen success?” And unfortunately, I was the first person in my area on the clinical trial that was a person of color, so I had not known about them previously.  

It was beneficial for me to be a part of the trial. The trial was not a success for me, but I did read research where the trial drug actually worked for others. 

I would advise for patients to ask doctors for the information and do additional research on their own, it’s okay to seek guidance. It is also okay for patients to search for support groups, ask within the support groups if these clinical trials have been done in other areas. If the clinical trial has seen success, if there are women of color on those clinical trials, it is important to know as much as you can about the drug. Patients should ask, “What are the side effects? What is the efficacy of the drug? How is the data from the drug used? Is your information going to remain anonymous?” There are a number of reasons patients should advocate for themselves as well as doing their own research, although your nurse practitioner or oncologist may go through the documentation with you, that it’s a lot to process at the time, you should ask for time to review the documents with your family or whoever helps you make decisions, I would also advise patients not to feel pressure to sign the waiver or the information packet the same day. Definitely take some time to read it, do your own research, ask other people who have been on the trial or ask other patients who have been in your shoes previously. I spoke with a number of women who hadn’t completed the clinical trial that I completed, but they had worked on clinical trials in the past.  

They shared with me the side effects that they experienced as well as some of the remedies that they use to counteract those side effects. They also share with me their experience with their oncologist or with their care team. So I had a very, very helpful care team. They walked through the release waiver with me. I also spent some time with my family, spent some time with my religious leader, as well as some of my breast cancer buddies, is what I like to call them, to make sure that I was making decisions for me, opposed to being pressured to sign on the same day that you received the release. And then lastly, I would just say really meditate and ask yourself, “Is this something that needs to be done, or is this something that needs to be added to my care plan to make sure that I have the best quality of life?” 

I would just like to let everyone know that clinical trials are not approved drugs, but with the help of other women of color who have been left out previously, we can… Or we can ensure that other women of color who are battling cancer and have a better chance. So I joined a clinical trial to make sure that I can help someone who will experience the same exact situation, and hopefully there will be additional drugs created or approved within the next 10 years to help someone else. Being stage IV is more than a notion, but I’m excited that I’m a part of history. So that clinical trial that I participated in did not work for me, but the information that was gathered would hopefully help them improve the drug. 

Multiple Myeloma: Thomas’s Clinical Trial Profile

Multiple Myeloma: Thomas’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

 At the age of 34, Thomas was diagnosed with multiple myeloma. After multiple treatments, including an autologous stem cell transplant, Thomas shares why it’s critical to increase participation in clinical trials so we can understand why multiple myeloma poses a greater risk to certain populations. In Thomas’ own words, “Participating in clinical trials is contributing to research for tomorrow’s medicines, and an opportunity to make a difference for myself and for others facing multiple myeloma.”

2021-08-17_thomasIllustration_v2 (1)

See More from Patient-to-Patient Diverse Myeloma Clinical Trial Profiles

Transcript:

Thomas: 

My name is Thomas, and this is my multiple myeloma story. At age 34, I was healthy and enjoying life. I went to the gym daily, and when I wasn’t working out, I was shooting hoops with my friends.  

During a workout, I suddenly felt excruciating pain in my left shoulder. My family physician declared I had bursitis, but I was so young and in such good physical shape, I knew by instinct that the diagnosis was wrong. I made an appointment with a sports medicine doctor, who ran CT and MRI scans of my upper body. The result wasn’t good. I was diagnosed with multiple myeloma, a cancerous tumor of plasma cells in my left scapula.  

Because the myeloma was localized to my shoulder, my oncologist recommended 6 weeks of radiation therapy. 10 months after the treatment, the agonizing pain returned, but this time in my lower back. The pain was so intense, I remember lying on the floor, unable to move. My myeloma has spread to my lower backbone and right ribs. This time, I received an autologous stem cell transplant, but after 2 months, I relapsed again.  

Still determined, I agreed to participate in a clinical trial to receive an allogeneic stem cell transplant using human leukocyte antigen (HLA)-matched donor cells from my brother Earnest. This time, I lived cancer-free for two years before relapsing. To keep the cancer from progressing, I joined another clinical trial to receive a second allogeneic transplant using my brother’s donor cells. This aggressive treatment also included an intensive conditioning regimen of high-dose chemotherapy plus total-body irradiation. Although the therapeutic effects were serious and kept me hospitalized for 127 days, the transplant was successful and pushed back my cancer for another two years.  

Since then, my cancer has relapsed multiple times, but I refuse to accept defeat. Although my cancer is unlikely to be curable, my current treatment has been successful at keeping the myeloma from advancing. I’m hopeful that I can live a long life while treating it as a chronic disease.  I want to share my story as a Black person with multiple myeloma to raise awareness of this rare cancer. African Americans are twice as likely to develop multiple myeloma compared to whites, and are also more likely to be diagnosed at a younger age1.  

It’s critical we increase the participation of Black people in clinical trials so we can understand why multiple myeloma poses a greater risk for Black people, and get closer to a cure.  Participating in clinical trials is contributing to research for tomorrow’s medicines, and an opportunity to make a difference for myself and for others facing multiple myeloma. 

My MPN Journey, Getting the Best Care After ET and MF Diagnoses

My MPN Journey, Getting the Best Care After ET and MF Diagnoses from Patient Empowerment Network on Vimeo.

Myelofibrosis and essential thrombocythemia (ET) patient Julia had experience as a health educator and hospital administrator before receiving her MPN diagnosis. Watch as she shares how she later connected the dots from her symptoms and blood work, lessons learned about myelofibrosis patient journeys, and her advice for living well with MPNs.

Related Resources:

Expert Advice for Learning About Your MPNs Online

MPN Caregivers: How to Provide Support During Appointments


Transcript:

Julia:

My name is Julia, I was diagnosed with essential Thrombocythemia in 2007, and then with myelofibrosis a year later, after a routine blood work. The diagnosis came out of nowhere. I was healthy and active prior to my diagnosis and raising five children with my husband. I’ll never forget the day I received a voicemail from my primary care doctor’s office, I really couldn’t believe what I was hearing. I didn’t have time for this illness in my life. I had a bone marrow biopsy that showed I was positive for JAK2 and had a 5q deletion genetic mutation. I started on daily aspirin, and it was a hard pill to swallow for many reasons.

As a certified health educator and former hospital administrator, I understood the importance of treating a rare disease, but I had a difficult time with the idea of taking medicine daily, and I felt like I didn’t have any symptoms. I reviewed my old lab print-outs that showed elevated platelets 15 years before, that slowly increased over time. I recall having severe migraines that would put me out of commission for the day, and tenacious fatigue in the years before, I didn’t connect the dots with the symptoms, and neither did my oncologist. By 2007, my platelets and white blood cells were very high.

I decided to find an expert with extensive experience with ET and MF to get top-notch monitoring and treatment. I connected with a specialist for many years and hope to keep living with my disease for many years ahead. I’ve had several hospitalizations and ER visits over the years, but keep on going. MF has absolutely changed the path of my life and how I live it, but I still do most of what I want to do while I’ve been lucky in maintaining stable myelofibrosis with no true signs of disease progression or serious myelofibrosis complications, it’s important to understand the path for other myelofibrosis patients might be quite different.

My advice for others MPN patients is:

  • Pay attention to how you feel and pace yourself
  • Keep track of your blood counts, so you can alert your care team
  • Find an MPN specialist for your care
  • Don’t forget to be present and spend time with your family.

These actions are key to staying on your path to empowerment

Multiple Myeloma: Danielle’s Clinical Trial Profile

Multiple Myeloma: Danielle’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Multiple myeloma patient Danielle was a very active person – and even went on vacation – right before receiving her diagnosis. Her myeloma journey unfolded with her myeloma symptoms, diagnosis, treatment, and participation in a life-altering clinical trial. “I decided to do the study trial because I also wanted to help individuals. If it wasn’t going to help me, then my data that they collect from the study trial will definitely help the scientists, researchers, the doctors. It would help them try to find a cure.” 

See More from Patient-to-Patient Diverse Myeloma Clinical Trial Profiles

Transcript:

Danielle:

Hello, everyone. My name is Danielle.

My myeloma story began in 2011. I was experiencing pain in my hip and my back area, and it was the pain that would come and go.  I was also very lethargic in 2011 and couldn’t understand why I was so extremely tired, so I thought the pain in my hip and back area was due to sciatic nerve, and I just didn’t do anything about it, ignored the pain. My husband and I went on our first trip without our sons in October of 2011, and two days before the trip, I developed this really bad nasty pain in my hip and leg area, which actually altered my walk, but I had no idea what the heck was going on, and so I was so frustrated that I… As soon as we got home, I went to see an orthopedic doctor because at that time I was working out like five times a week, so I thought maybe I pulled something, a pinched nerve or something. So I went to see him, he took X-rays, I believe it was an MRI, couldn’t be sure, but when I went back to get my test results, he sat me down and said, “Mrs. Spann, there’s a mass here in your fibula, and I’m going to recommend you to an orthopedic oncologist.” So, that was the very beginning of my diagnosis, initial diagnosis. Of course, I was in denial because I’m like, I knew what an oncologist was, but he must not be talking to the right person, but I went ahead and I met with the orthopedic oncologist. He ran a bunch of tests and mentioned to me that I had myeloma, which is concentrated in one area, which was my fibula, and then he recommended that I have my fibula removed on my right leg. Two days before surgery was scheduled, I received a phone call from his office, saying, “Mrs. Stann, you have lytic lesions all throughout your skeletal structure, and we’re recommending that you go see a bone marrow transplant oncologist.” So now it’s becoming real. The diagnosis is what it was, and I just wanted to know how I could basically fight this. I’m the type of person where you tell me one thing and let’s try to find a solution, so I met with the bone marrow transplant specialist, the oncologist, and then we formulated a plan, and that plan was for me to go on my first study trial. And so that was my introduction into my having multiple myeloma.

I made the decision to participate in a trial, because I trusted my doctor. He had the expertise to understand where my myeloma was, the counts, how aggressive it was, and he recommended that I go on the study trial. He also told me that if the study trial was not going to work for me, or if it wasn’t helping me, that he was going to take me off the study trial. So, I was on the study trial from like January to March…to the end of March, and he sat me down and said that it was not working, my numbers weren’t really moving, and that he was taking me off the study trial. And he took me off the study trial, there were some other treatments that were involved, and then I had two stem cell transplants. After the transplant in 2012, I went ahead and started another treatment regimen, and I was on that for several years, which worked well. My numbers were coming down, but then unfortunately they started going back up, so he mentioned that I should go on another study trial.  I weighed the odds, and I knew that he would not lead me down the wrong path. So, I went ahead and I participated in the study trial that I’m still on today, and I’ve been on it for about three, four years.

I decided to do the study trial because I also wanted to help individuals. If it wasn’t going to help me, then my data that they collect from the study trial will definitely help the scientists, researchers, the doctors. It would help them try to find a cure. And so that’s what I wanted to help in some form or fashion, and when I first was diagnosed going to the Winship Cancer Center twice a week, there was a quote that was posted in the cancer center, and that quote was by Dr. Martin Luther King Jr., the quote read, “Life’s most important and persistent question is, ‘What have we done to help others?’” And I would go into the center and I’m like, “Yeah, what have I done to help others?” And me participating in the study trial, I felt like I’m helping others indirectly, and it wasn’t always just about myself, it was, “Okay, yes, the study trial gives the data, and it’s helping me, but it’s also helping that next person as well.”

So, I always look at my life as before diagnosis and after, and my after does not look like my before, I can’t do the same things, I can’t do the same things that I used to do. And one of those things is going to the mall and being in there like 10 hours, that’s so remedial, but it just goes to show like I cannot exert myself the same type of energy that I could before diagnosis. And again, that’s my new normal.  I stay positive with everything in life, things happen, but you just have to do what you can to make it better, no matter what it is.

I am happy and proud and so grateful and thankful to mention that as of January 2021, my myeloma is 0% detectable, which means there’s no presence of multiple myeloma in my blood, in my urine, nor in my bone marrow. And so I’m still on a study trial, and I have two different chemo meds that I have to take, and I just act accordingly if I know that one of the chemo meds that I have to take twice a week gives me an upset stomach. I just accordingly in finding different ways to push through it. It is what it is, and my motto when I was having my bone marrow transplants was, “This too shall pass.” And so no matter what I’m going through in life, no matter how down I get. This moment will pass. And so tomorrow, you’ll look back on today and say, “You know what, I did it, I made it.” And you’ll do that for the next day, until you realize that you’re just constantly defeating that previous day, and you’re moving forward.

So, I’ve heard the terminology of a clinical trial, never really paid attention to it because I never had to…I had an idea what the clinical trial was. But once it really came home to me, I realized that, in my words, the clinical trial is collecting the data necessary, they’re going to give you the trial medication, because they’re looking to get this, this medicine approved to put on the market. These medications would not get approved by the FDA, acetaminophen (Tylenol) at one point had to go have a study trial and then get approved by the FDA and then can be distributed to the masses. And so it’s the same with these other drugs. We need individuals to participate positively, knowing that if this is not helping me right now, it will help someone in five years, in two years, in 20 years. The advice that I would give is to trust your doctor, your doctor would not recommend a study trial if he felt that there was a medication that’s already on the market that would help you better. If the study trial you’re on is keeping you with your family, and at the same time is…the scientist, the researchers they’re gathering all this data, it could come to be an actual medication in three, five, seven years. And so just think of it as something that you’re helping society…and your fellow…and your fellow man.  

Triple-Negative Breast Cancer: Stacy’s Clinical Trial Profile

Triple-Negative Breast Cancer: Stacy’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Triple-negative breast cancer patient Stacy was diagnosed by a breast cancer surgeon she works with. Watch as she shares her journey through diagnosis, her decision to join a clinical trial, her experience with treatment, and her current feelings about clinical trials.

See More from Patient-to-Patient Diverse Breast Cancer Clinical Trial Profiles

Transcript:

Stacy:

I was diagnosed by a medical provider that I work for, she’s a breast surgeon, and once I was diagnosed, because I’m in the environment of breast surgeons and breast multi-discipline providers, my care was probably handled a little differently. So, I was referred to an oncologist who then introduced me to the clinical, the breast clinical trial that was available. I actually didn’t have a lot of questions except for will it help others? And he said it would, it’s for triple-negative diagnosed patients. The trial is an additional drug that helps with the triple-negative, and it has been provided by the FDA. So, because of that, I was willing to do it. My only pushback was that the treatment was every week compared to it being every two weeks or three weeks. The first phase…for me was…I had no problems with it. Actually, after treatment, I was up for 48 hours, which allowed me to do a lot of things – house work, part-time job, working remotely, it just afforded me things that I would not be able to do for being tired.

I always have had my screens, and I’ve had diagnostic mammograms and they always came back normal, so negative. And this particular time, I had Dr. Hampton to just look at it, it just felt like a cyst. I wasn’t really concerned with it. So Dr. Hampton did look at it, we thought initially that it was a cyst and not infected, but two weeks later that what felt soft then became very hard and round, oval-shaped. I was just…in two weeks, it was already hard. So I said, okay, so I had her to look at it again, and from there she said, You need to have this worked up.” And then from there, I went and had another diagnostic mammogram, and the next day I was scheduled for a biopsy by the top radiologist. And he said, “Stacy, I think that you need to have an MRI.”

Right, and so I had an MRI, had a CAT scan, all that was done within two weeks, and they tell me that I had cancer. Dr. Hampton…this is kind of funny because the staff scheduled my appointment, as I am the manager of the breast center. They scheduled my appointment. I met with her, and she let me know that I was triple-negative and that it would require chemo as well as radiation and surgery. The following week, I was scheduled for chemo.

Once I spoke with the oncologist, he said he employed me to look up the trial, and it would be beneficial to others. I initially was not that excited about the trial, I reached out to others who were triple-negative here in our office to ask and what they thought about it. One of the patients/friend, she already knew of the trials, she gave me three different trials that were going on right now. And one of them happened to be the one that he suggested that I should participate in, and she just basically said we would be helping…that I will be helping others to participate in it. So I thought about it for about two or three days, and then I decided to participate in it. Now initially, I wasn’t so keen on it, but after hearing about helping others and that it was mostly, I was told that it was almost like a miracle, medicine that helped triple-negative. And I decided to do it.

During my trial, the lump that I felt once I started on a trial treatment in three weeks, the lump was gone. And each week it wasn’t completely, but it reduced itself in three weeks. And as I continue with the treatment, we couldn’t feel it. I had my provider that I was seeing, the oncologist, and each week it was almost like it was gone, it was totally amazing because prior to that, it probably…it felt like the size of maybe a large, grape, but it just in three weeks, it was totally a big difference. So, I know that the trial is good. It has to be because in three weeks or something that I’m thinking probably grew in six weeks, whereas I was able to feel it, I couldn’t feel it anymore, and that three to four, it was gone.

So prior to being diagnosed, there were a multitude of things that I did not know. Working for a breast surgeon, where we see those patients and then becoming one of those diagnosed patients are totally two different things. What I thought I knew, it became apparent that I didn’t know, and there were things like the metallic taste that you have in your mouth, you can no longer use metals, anything, utensils…you have to use plasticware. The neuropathy that you feel in your hands, it’s hard to pick up anything that’s metal, the feeling just kind of goes through your hand, that means keys, that’s a door knob, you just have to kind of suck it up and do what you have to. The tiredness, but they don’t let you know that you’ll feel exhausted. That’s totally different from tired. So once you’re diagnosed, you have to see a multitude of providers, specialists, you have imaging that’s done, and the team that I have had done most of that for me, so I have a great support team.

Life today is, I have my up and down days, for the most part, my days are good. Once I have my treatment, my first phase went so well, I wasn’t tired. I was still doing things that I normally do with the exception that I had gained a lot of weight. So my second trial started about four weeks ago, and it hit me very hard, I was so exhausted, I have never in my life been that exhausted, that…taking two steps, and I felt like I had ran a marathon. With me being so independent and knowing or wanting to be around my team, I forced myself to come into work, and the second trial also brought on bone pain, muscle pain, headaches, and again, I was just totally exhausted from it.

What you have experienced or endured at the time, during a clinical trial and expressing it, it can only help the next person. But, in essence, I think the clinical trial is not in that only to help someone else, but it’s also to help you…I think the knowledge of just knowing that you’re a part of something that could be enhanced or approved or just help you with your health is a plus. So, working with a breast surgeon and working with multi-discipline providers that’s on the team, oncology radiology, technologist, and seeing the impact that it has on patients, I wanted to participate in the trial because again, I knew that it would help people. So just being a part of that environment definitely impacted my decision in participating in the trial. With the scientific studies that they have out there with the trial, it can only make the research for us better.