PEN Blog Archives

How Does Aggressive Prostate Cancer Impact Various Populations?

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How Does Aggressive Prostate Cancer Impact Various Populations? from Patient Empowerment Network on Vimeo.

How is prostate cancer impact different for some populations? Watch as expert Dr. Yaw Nyame shares how prostate cancer incidence and death rates vary for some groups, potential risk factors, screening recommendations, and actions that can be taken to improve health outcomes.

See More From Best Prostate Cancer Care No Matter Where You Live

Related Resources:

Ask the Prostate Cancer Expert: How Is Prostate Cancer Diagnosis and Treatment Evolving?

Transcript:

Sherea Cary: 

What differences do you see in terms of aggressiveness for cancers in different…various populations? 

Dr. Nyame: 

This is an area of research that for me, is trying to understand why certain populations have more aggressive or worse outcomes when it comes to prostate cancer. 

The most obvious example of this here in the United States is for Black men. Black men are more likely to be diagnosed with prostate cancer each year, so about 70 percent more likely to be diagnosed, and they are twice as likely to die from prostate cancer as men of other races in the United States. If you look at what the natural history of prostate cancer and Black men looks like, meaning if you were to chart from diagnosis through the course of the disease, does it look different for Black men? The answer is yes, it appears of Black men get prostate cancer when they’re younger, and there’s data to suggest that perhaps Black men get more aggressive prostate cancer because they’re more likely to progress from the localized or treatable disease to stage IV aggressive disease that can’t be treated. We don’t understand what the drivers of that are for a long time, the medical community has suggested that it’s all biology, and by that may be an inherited biology, but we know that health disparities really carry a significant social contribution. And, in fact, I like to say that social and environmental factors inform biology too. And so, if we see something biologic that explains these trends, it doesn’t mean that that’s the way they were born, it might mean that you put someone in a community that lives near a highway with high pollution or does not have access to clean water or lives in a state of high stress or over security. We don’t know what the biologic manifestations of those types of experiences are, but that perhaps is the reason why we see our communities of color, especially our Black men, are experiencing a higher burden of prostate cancer. 

Sherea Cary: 

So, is there a push to have African American men tested earlier with the PSA test, since it appears that they may get prostate cancer earlier?  

Dr. Nyame: 

The U.S. Preventative Services Task Force, which makes a recommendation to the medical community about prostate cancer screening states that they cannot make a specific recommendation about screening in Black men and other high-risk populations like men with a strong family history of prostate cancer, because those men were not included in the clinical trials that have looked at the efficacy of PSA testing for screening. 

Unfortunately, Black men make up 3 percent or less of participants in the two screening trials that have informed whether there’s a benefit to PSA testing, which there has been shown to be a 20 percent decrease in dying from prostate cancer if you get screened. We recently took data from the screening trials and superimposed them on real-world data from our surveillance apparatus for cancer in the United States, and what we found was that if you did lower the age of screening in Black men from age 55 to 45, that you did decrease the risk of dying from prostate cancer significantly. It is our hope that this type of research will encourage the U.S. Preventative Services Task Force and other medical societies to reconsider their screening recommendation for Black men, ultimately, whatever, if there is a recommendation made to screen at younger ages, I think we need to be conscientious and evaluate what the impact is on the ground, so that if there is a time where we need to reverse a recommendation like that because it’s potentially harmful, that we consider that. But I feel strongly sitting here today that we do need to advocate for earlier screening and Black men. 

#patientchat Highlights – How Can You Utilize Telehealth Services?

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Last week we hosted a “How Can You Utilize Telehealth Services?” #patientchat with Diverse Health Hub (@DHealthHub). The #patientchat community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

What are known misconceptions of telehealth services?

What barriers present themselves with telehealth services?

If anything, what can we do to address and help raise awareness about them?

Full Transcript

Lung Cancer: Gina’s Clinical Trial Profile

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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

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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!”

See More from Best MPN Care No Matter Where You Live

Related Resources:

 Expert Advice for Learning About Your MPNs Online

 MPN Caregivers: How to Provide Support During Appointments

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. 

12 Best Practice Tips To Design Helpful Patient Information Materials

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As a patient advocate, you may be asked to help review or co-design patient information materials. Or you may wish to create the information yourself because you’ve noticed a gap in helpful information for your patient community.

Good patient information is important for several reasons.

Firstly, it reinforces what a healthcare provider has told the patient. If, due to stress, a patient hasn’t absorbed the information from their provider, a brochure or information sheet serves as a reminder.

Secondly, by educating patients, good information empowers patients with the knowledge, understanding, skills and confidence to take an active role in their health and wellbeing.

Thirdly, by sharing the information with friends and family, their loved ones can take a more active role in supporting the patient.

Whether it’s information for a brochure, leaflet or website, the same design principles apply. Information design should make complex information easy to use and understand, and ultimately empower patients to take a more active role in their care.

The following checklist is designed to help you in your own advocacy work when you are called upon to design patient information materials.

1. Know Your Purpose and Audience

Before you start, consider the purpose behind creating this information. What do you wish to achieve? For example, do you wish to increase understanding or raise awareness of a disease, or give instructions about a procedure or a medication?

Next, who are you creating this information for? Who is your intended reader? Are there health literacy challenges you will need to address with this audience? Consider if audio or video is needed if there are challenges for your audience in reading the information. Consider also if English is not a first language for your intended reader, will you need to create multiple versions of the content in different languages?

2. Use Plain English

Plain English is a way to write and present information so a reader can understand and act on it after a single reading.

Use plain, everyday words. For example, instead of “commence”, write “start”; instead of “in the event that”, use “if”.

Avoid jargon and acronyms. If you have to use medical terminology, explain the terms as you go along. If this clutters up your text, put the explanations in a glossary.

3. Write From The Perspective Of A Newly Diagnosed Patient

As patient advocates, we have most likely been immersed in our disease space for many years. We have become experts in the terminology and language of the medical world. We understand side-effects and know how to weigh up the pros and cons of treatment. But experts are made not born. Think back to those first few days and weeks of diagnosis. Remember the confusion and the uncertainty you probably felt at the time. Put yourself back into those shoes of a newly diagnosed patient and communicate from this perspective.

4. Make It Personal

Write as you would speak to the reader. Using personal pronouns such as “we” and “you” helps create a sense of relatability and trust.

5. Use Direct Language

Adopt present and active tense to make sentences more direct (e.g.” the nurse can vaccinate your child” rather than “ your child can be vaccinated by the nurse”.)

6. Design For Readability

Use short sentences and only include one main point in each sentence.

Try to avoid using hyphens and semicolons.

Keep capitalization to a minimum. Capital letters are harder on the eye. Use lowercase letters throughout the text. Save capital letters for the start of sentences and names.

Left align paragraphs. Left-aligned paragraphs make text easier to read than justified text. Justified text can create gaps between words, which slows down reading particularly for people with dyslexia.

7. Avoid Dense Text

Dense text means patients lose concentration and therefore cannot find the information required. To avoid this, keep your paragraphs short. Short, clear, separated chunks of text encourage those with reading difficulty to continue reading.

Use headings and paragraph breaks to separate blocks of information.

Good use of large text, white space and columns can also help readers to more easily assimilate information. Make sure related information is located together and not split over different columns.

8. Pay Attention to Typography

Typography is the art and technique of arranging type to make written language legible, readable and appealing when displayed. No matter how well written the text is, if it is set out in a typography which is difficult to read, it is going to adversely affect readability and comprehension.

Choose Arial or Calibri type fonts for readability. When it comes to font size, 10 point is too small for most people to read. 12 point is more suitable. Choose 14 point for older people and children. 16 point is used for partially sighted people. Finally spacing between the lines should be 1.5 line spacings.

9. Use Design To Enhance Comprehension

How the information is set out in the document is an important feature of readability and comprehension. People tend to scan when they read information (this is particularly true of online information), so your document should have a logical order and structure to help readers find their way through the information.

You can achieve this in a number of ways, including the use of reversed text (e.g. white lettering on a dark background), headings and subheadings in bold font, bullet or number points. Use bold instead of italics and underlining as italics or underlining make text harder to read.

When using bulleted lists, make sure each item follows logically in sequence. Keep lists to a maximum of eight points where possible and start and end a list on the same column or page.

Tip: Use callouts to highlight key messages for content skimmers.

10. Choose Good Visuals

Visuals such as pictures, diagrams and photos can sometimes say more than words. Ensure the images you use are real, relatable and sympathetic to the reader.

Avoid idealized, ‘photo-shoot’-style images of people.

Choose images that are inclusive. Use images that don’t reinforce negative or stereotypical attitudes especially for ethnicity, age or gender.

11. Be Consistent

Be consistent in your use of design features, such as headings, sub-headings, etc. Describe numbers consistently (for example, don’t use percent on one line and fractions on the next).

12. Signpost to Other Sources of Information

Including other useful sources of information, such as helplines of patient organizations and general sources of medical information is a valuable source of further information and support for patients.

Do not confuse people by covering several treatments and conditions in the same leaflet. Tell people what other information, resources and support are available to them.

Conclusion

Next time you are called upon to design patient information materials, use the checklist in this article to guide you. Providing patients with accurate and actionable information is essential in delivering high quality care to patients and an important element in our patient advocacy.

Why Should You Ask Your Doctor About Prostate Cancer Genetic Testing?

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Why Should You Ask Your Doctor About Prostate Cancer Genetic Testing? from Patient Empowerment Network on Vimeo.

Why is it genetic testing important when it comes to prostate cancer care? Learn how test results could reveal more about YOUR prostate cancer and may indicate that one treatment may be more effective than another.

See More From INSIST! Prostate Cancer

Related Resources

How Does Genetic Testing Impact Prostate Cancer Care?

Treatment Options for Advanced Prostate Cancer

What Is a Prostate Cancer Genetic Mutation?

Transcript:

Why should you ask your doctor about genetic testing?

The test results may predict how your prostate cancer will behave and could indicate that one type of treatment may be more effective than another type.

Genetic testing identifies specific gene mutations, proteins, chromosomal abnormalities, and/or other molecular changes that are unique to YOU and YOUR prostate cancer.

There are two main types of genetic tests used in prostate cancer:

  • Germline or hereditary genetic testing, which is conducted via blood or saliva and identifies inherited gene mutations in the body. Germline mutations are present from birth and can be shared among family members and passed on to subsequent generations. Results can identify whether you could be at risk for another type of cancer or if your family members may need genetic counseling and testing to guide their own cancer risk.
  • The second is somatic or tumor genetic testing, which is performed through testing tumor tissue or by testing cancer cells/DNA extracted from blood to identify gene mutations that are unique to the cancer itself. It is also commonly referred to as genomic testing, biomarker testing, or molecular profiling. Somatic mutations are NOT inherited and are NOT passed on to subsequent generations or shared among family members.
  • Depending on your history, your doctor may order one–or both–of these types of tests.

So why do the test results matter?

Both germline and somatic mutation testing can identify the presence of certain genetic mutations that may help to guide your treatment plan, and germline testing specifically can inform cancer risk for you and, potentially, family members.

  • In some cases, mutations can indicate that a newer approach, such as targeted therapy or immunotherapy, may work better for you.
  • Results of these tests may also help you to find a clinical trial that may be appropriate for your particular cancer.
  • And, genetic testing results could also show that your cancer has a mutation or marker that may prevent a certain therapy from being effective, sparing you from getting a treatment that won’t work well for you.

How can make sure you have had essential biomarker testing?

  • First, always speak up and ask questions. Remember, you have a voice in YOUR prostate cancer care.
  • Ask your doctor if you have had or will receive genetic testing, including germline and somatic testing, and how the results may impact your care and treatment plan.
  • Ask whether your family members should meet with a genetic counselor or undergo testing to help gauge their risk of developing prostate cancer.
  • And, finally, bring a friend or a loved one to your appointments to help you process and recall information.

To learn more about your prostate cancer and to access tools for self-advocacy, visit powerfulpatients.org/prostatecancer. 

Tips for a Telemedicine Visit From a Head and Neck Cancer Expert

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Tips for a Telemedicine Visit From a Head and Neck Cancer Expert from Patient Empowerment Network on Vimeo.

How can head and neck cancer patients prepare for telemedicine visits? Watch as expert Dr. Samantha Tam from Henry Ford Health System shares her tips for telemedicine best practices and tests that can be helpful used in conjunction with virtual care.

See More From The Head & Neck Cancer TelemEDucation Empowerment Resource Center

Related Resources:

Transcript:

Samantha Tam, MD, FRCSC, MPH: 

So in head and neck cancer, a lot of the virtual visits are mainly based on obtaining a clinical history and having a discussion with your provider verbally as opposed to a lot of physical examination, this is unfortunately the limit of virtual care, and definitely, especially in head and neck cancer, a lot of our examination is through into your ears, into your nose, into your mouth with endoscopic examinations weaved into it, and definitely like CT scans are useful as a modality, as a modality of investigation to have ready prior to your visit with your head and neck cancer provider. Tips that I have for families and for patients that are facing a diagnosis of head and neck cancer before your virtual visit is to make sure that you have any kind of questions that you have written down so that you can make sure that your provider is able to go through each one of these questions to ensure that you have a good understanding of exactly what the next steps are, or what the diagnosis is and what the plan might be moving forward. 

Disparities in Telemedicine Access for Head and Neck Cancer Patients

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Disparities in Telemedicine Access for Head and Neck Cancer Patients from Patient Empowerment Network on Vimeo.

Which head and neck cancer patients have experienced disparities in telemedicine access? Watch as expert Dr. Samantha Tam from Henry Ford Health System explains patient demographics with less access to care and how these disparities can be reduced.

See More From The Head & Neck Cancer TelemEDucation Empowerment Resource Center

Related Resources:

Transcript:

Samantha Tam, MD, FRCSC, MPH: 

So, during the pandemic, there was a large uptake of virtual care that was pretty unprecedented previously, and a lot of the times patients didn’t have any other options aside from accessing care through telemedicine because of the precautions that were taken within institutions in limiting in-person care. With this, we saw that there was a very specific demographic that we’re able to access telemedicine, and there were some patients that potentially could have been left behind. These patients are usually patients that have lower SES (socioeconomic status) indicators such as lower median household income, or perhaps lack of insurance coverage and the difficulty, especially in head and neck cancer, is that a lot of the times, these are the same patients that are at highest risk for head and neck cancers or have the highest needs in head and cancer. And certainly understanding who these patients are is extremely important, so that we ensure that we have equitable delivery of health care to these patients, and we don’t utilize these platforms that put these patients that are already at a disadvantage at more of a disadvantage.  

Lung Cancer: Donna’s Clinical Trial Profile

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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

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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.

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

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

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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. 

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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

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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

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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.”

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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

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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)

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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. 

Committing to Eating Healthier Can Lead to Savings in Your Pocket Both Now and in the Future

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Have you ever eaten something that you really love but for some reason it doesn’t seem to like you back? I have. For instance, ice cream used to be my favorite desert. But sometime in my 30’s, ice cream started making me feel ill. And because of that, no matter how much I wanted it, I began to lose interest. I also started feeling better. The older I became, the more I realized that most foods containing sugar were making me feel sluggish along with some other no so pleasant symptoms. Additionally, bread became my enemy. Now I have to admit this was particularly hard. I absolutely love some hot crusty bread with pure Irish butter. Yum!!

Now I have more energy, sleep better, and have better focus as a result changing my eating habits. Another real surprise, I no longer had the body aches and joint pain I once suffered. Upon research, I found that sugar and carbs can cause inflammation. So, I also started reading labels. There is sugar in almost everything, including seasonings, ketchup, milk, breads, and so much more. And did you know that a lot of the foods you buy from restaurants are loaded with sugars and salts? To offset too much salt in a dish, sugar is added. And vice versa. So, I’ve begun to eat a lot more vegetables, and whole grains such as whole wheat, and quinoa, as well as nuts and fruit. Doing so also allowed me to explore other herbs and seasonings to add flavor. Also, being more mindful about what I ate made me think about the amount of red meat I was eating and how much I was eating out. Suffice it to say, way too much! I kept a journal of what I was spending eating out and found it added up to over $400.00/ month.

I surmised that a lot of people were in the same boat. And that this was as a country are making us obese, diabetic, have heart attacks and strokes, perhaps making us more prone to cancers, and migraines and neurological problems and learning problems and the list goes on and on. So, how does this relate to saving money? Well. Now that I’m more conscious of what I’m eating, I cook more often with better choices of food. I lean toward organic now and am limiting the amount of red meat. I am learning to shop more from the periphery of the store. In the summer, farmer’s markets are the way to go. I even have a small potted garden, which is so easy to maintain with fresh herbs, and some vegetables. These illnesses are making us less productive and we are taking more sick days from work than we probably used to take. And we are going to the doctors more often than we used to. Spending more on co-pays, deductibles and other out of pocket costs. Now that extra money saved on eating out can be directed to other needs such as medical treatment costs or other expenses or savings programs.

Now I’m teaching my 5-year-old granddaughter how to cook, raise a garden and especially understand nutrition and how to read labels. With the cost of healthcare going up more than inflation every year, I can’t imagine what the cost burden will be for her when she is an adult. In fact, in 2019, according to the OECD Health Statistics database and the CMS National Health Expenditure Accounts data, the US spends more per capita than any other comparable country on health care and related expenses. In 2019 that was $10,966 with comparable countries averaging $6,697.

That was an astounding 17% of the US GDP! And unfortunately, that doesn’t mean that we as a country are healthier. So hopefully, educating my granddaughter now, when she is young, will lead to a heathier lifestyle for her and reduce her costs of healthcare. So, if I can get heathier now, perhaps it can help keep me out of the doctor’s office and also save me money.

I shudder to think of all of the money I’ve wasted over the years buying meals that perhaps satisfied my immediate taste but all along was contributing to poorer health. In hindsight, that money could have been put to better use elsewhere. I could have felt better for most of my life if I had paid more attention to what I was eating, and my savings account could be bigger as well. I still occasionally eat out and enjoy the rare ice cream as well as the bread with butter. I’m not a nutritionist, I am a financial advisor, and financial coach. I just know that as a result of my personal experiences, and after 20+years working with my financial clients, many of those who have become more mindful of even just their eating out habits, have drastically improved their health and their financial lives.