A Compromised Immune System…Myeloma & Me

My year is off to a rocky start – Myeloma is wreaking havoc on my body and doing a number on my ever-weakening immune system. New Year’s Eve I went to the emergency room…. they ran tests and sent me home.  A few weeks ago, I went to the ER again as I have been puking nonstop, unable to hold down anything even those that go straight into my intestines via my GI tube. I was so dizzy I couldn’t handle it anymore. I figured they would do the normal treat and release but they didn’t. I spent 48 hours in the ER till they found me a room, my primary care physician came in and said, “I’m getting you out of here cause it’s most likely just an ear infection.”  Well that two days ended up being seven days and many doctors were called in, including a few of my previous specialists. He then called my oncologist who said yes, we will resume care just get her here. I then was at that hospital another seven days. They changed my formula after withholding some of my meds that entire time. Two weeks without Lasix and they wondered why my potassium bottomed out. Nothing makes sense about the time there but with my new feeds I’m doing well on.

So, I’ve been home a week now. My labs they drew Monday were normal. Potassium was 2.7 at the hospital and are 8.2 now. I had restarted my Lasix on Saturday before the labs were drawn. Of course, now I’m dealing with severe swelling. When I was weighed at the hospital I dropped from 204 to 130! No one is happy about the weight loss and I’m questioning if I need the Lasix, is it causing me to swell? So, I have an emergency cardiology appointment this week. I will also see my oncologist this week.

I’m also wondering if I have a blood clot as when I was in the hospital I started having numbness from the ankles to my feeding tube area!  So much going on ….and yes, I’m scared. My grandfather died from a clot going into his lung unnoticed by hospital personnel back in the 80s, I’ve told my care team about this and about the numbness and no one is taking me seriously. They called the doctor on record who did nothing either. Now my father found out he has clot issues in his legs (not his dad who had that clot but my moms, my father had to have surgical intervention to ease his).

TD March 2017All of this on top of dealing with cancer – too much for one person to deal with.  But no matter how poorly I feel and how worried I am for the future, I am reminded to advocate for myself and then others if I’m able to. I sometimes have a hard time remembering that myself…It’s going to be a long week

MPN Patient Cafe® March 2017 – Life with an MPN

MPN patient and moderator, Andrew Schorr, leads a panel of MPN patients in this session of Patient Cafe®. The panel of patient advocates includes David Denny a Myelofibrosis (MF) patient, Andi Malitz an Essential Thrombocythemia (ET) patient, and Alisa Rouse a Polycythemia Vera (PV) patient. The panel shares their inspiring stories, how MPN has impacted their life, and what they do to live well with their disease. Lastly, they remind us to:

  • Advocate to get the right treatment for you
  • Remember you are not alone
  • Use your disease for good

Check out the full video below to hear from four MPN patient advocates.

Patient Cafe® MPN – March 2017 from Patient Empowerment Network on Vimeo.

How to Read and Understand a Scientific Paper

In a previous article, How to Read Beyond the Headline: 9 Essential Questions to Evaluate Medical News, I recommended you should always try to read an original study (if cited) to evaluate the information presented. In this follow-on article, you will learn how to read a scientific research paper so that you can come to an informed opinion on the latest research in your field of interest.  Understanding research literature is an important skill for patient advocates, and as with any skill, it can be learned with practice and time.

Let’s start by looking at what exactly we mean by the term “scientific paper”. Scientific papers are written reports describing original research findings. They are published in peer reviewed journals, which means they have been refereed by at least two other experts (unpaid and anonymized) in the field of study in order to determine the article’s scientific validity.

You may also come across the following types of scientific papers in the course of your research.

•       Scientific review papers are also published in peer reviewed journals, but seek to synthesize and summarize the work of a particular sub-field, rather than report on new results.

•       Conference proceedings, which may be published in a journal, are referred to as the “Proceedings of Conference X”. They will sometimes go through peer review, but not always.

•       Editorials, commentaries and letters to the editor offer a review or critique of original articles. They are not peer-reviewed.

Most scientific journals follow the IMRD format, meaning its publications will usually consist of an Abstract followed by:

•       Introduction

•       Methods

•       Results

•       Discussion

 

Let’s look at each of these sections in turn.

(a) Introduction  

The Introduction should provide you with enough information to understand the article. It should establish the scientific significance of the study and demonstrate a relevant context for the current study.  The scope and objectives of the study should be clearly stated.

When reading the Introduction, ask yourself the following questions:

·       What specific problem does this research address?

·       Why is this study important?

(b) Methods

The Methods section outlines how the work was done to answer the study’s hypothesis. It should explain new methodology in detail and types of data recorded.

As you read this section, look for answers to the following questions:

  • What procedures were followed?
  • Are the treatments clearly described?
  • How many people did the research study include? In general, the larger a study the more you can trust its results. Small studies may miss important differences because they lack statistical power. Case studies (i.e. those based on single patients or single observations) are no longer regarded as scientific rigorous.
  • Did the study include a control group? A control group allows researchers to compare outcomes in those who receive a treatment with those who don’t.

 (c) Results

The Results section presents the study’s findings.  It should follow a logical sequence to answer the study hypothesis.  Pay careful attention to any data sets shown in graphs, tables, and diagrams. Try to interpret the data first before reading the captions and details.  If you are unfamiliar with statistics, you will find a helpful glossary of terms hereClick here for an online guide to help you understand key concepts of statistics and how these concepts relate to the scientific method and research.

Consider the following questions:

  • Are the findings supported by persuasive evidence?
  • Is there an alternative way to interpret these findings?

(d) Discussion 

The Discussion places the study in the context of the broader field of research. It should explain how the research has moved the body of scientific knowledge forward and outline the next steps for further study.

Questions to ask:

•       Does the study have any limitations? Limitations are the conditions or influences that cannot be controlled by the researcher.  Any limitations that might influence the results should be mentioned in the study’s findings.

  • How are the findings new or supportive of other work in the field?
  • What are some of the specific applications of the study’s findings?

The IMRD format provides you with a useful framework to read a scientific paper. You will need to read a paper several times to understand its findings. Consider your first reading of the study as a “big picture” reading.  Scan the Abstract for a summary of the study’s principal objectives, the methods it used and the principal conclusions. A well-written abstract should allow you to identify the basic content of an article to determine its relevance to you.  In describing how she determines the relevance of a study, research RN, Katy Hanlon, focuses on “key words and phrases first. Those that relate to the author/s base proposal as well as my own interests”.  Medical writer, Nora Cutcliffe, also scans upfront “to gauge power and relevance of clinical trial data”. She looks for “study enrollment (n), country and year”. It’s important to note the publication date to determine if this article contains the latest findings or if there is more up-to-date research available. Cutcliffe also advises you should “note author affiliations and study sponsors”.  Here you are looking out for any potential bias or vested interest in a particular outcome.  Check the Acknowledgments section to see if the author(s) declare any financial interests in the research which might bias their findings. Finally, check if the article is published in a credible journal.  You will find reputable biomedical journals indexed by Pubmed and Web of Science.

Next, circle or take note of any scientific terms or keywords you don’t understand and look up their meaning before your second reading. Scan the References section – you may even want to read an article listed here first to help you better understand the current study.

With the second reading you are going to deepen your comprehension of the study. You’ll want to highlight key points, consult the references, and take notes as you read.  According to the scientific publisher, Elsevier, “reading a scientific paper should not be done in a linear way (from beginning to end); instead, it should be done strategically and with a critical mindset, questioning your understanding and the findings.”  Scientist, Dr Jennifer Raff, agrees. “When I’m choosing papers to read, I decide what’s relevant to my interests based on a combination of the title and abstract”, she writes in How to read and understand a scientific paper: a guide for non-scientists. “But when I’ve got a collection of papers assembled for deep reading, I always read the abstract last”. Raff explains she does this “because abstracts contain a succinct summary of the entire paper, and I’m concerned about inadvertently becoming biased by the authors’ interpretation of the results”.

When you have read the article through several times, try to distill it down to its scientific essence, using your own words. Write down the key points you have gleaned from your reading such as the purpose of the study, main findings and conclusions. You might find it helpful to develop a template for recording notes, or adapt the template below for use. You will then have a useful resource to find the correct reference and to cross reference when you want to consult an article in the future.

In the example below I have taken an article published in 2015, as an example. You can read the paper Twitter Social Media is an Effective Tool for Breast Cancer Patient Education and Support: Patient-Reported Outcomes by Survey on PubMed.

Template for Taking Notes on Research Articles

 

 

Further reading

Insights From Engaged Patients

More and more patients want to be active participants in their healthcare. They want to be involved in the decision making process, access to their health records, and tools to help monitor their health. A recent Inspire survey of over 10,000 patients and caregivers reveals that they are becoming more engaged. The below infographic shows some of the compelling statistics from that survey.

 

Digital Sherpa™ Press Release

Digital Sherpa™ Press Release

Media Advisory

Two upcoming Digital Sherpa Workshops offer unique support to

local cancer patients

Fort Myers, FL – March 9, 2017… In partnership with Patient Empowerment Network (PEN) and Florida Gulf Coast University (FGCU), Florida Cancer Specialists & Research Institute (FCS) is pleased to announce two upcoming Digital Sherpa Workshops on Thursday, March 16, 2017 and Thursday, April 27, 2017 at its Gladiolus Cancer Center (8260 Gladiolus Drive, Fort Myers, FL). The workshops are open to FCS patients, caregivers and friends.

Hosted by PEN, the Digital Sherpa Program aims to help cancer patients and their families become more tech-savvy. The program’s workshops educate patients and caregivers in basic internet and social media skills to help them in their search for information about their illness and support for them and their families.

Cancer patients, known as “Climbers” in the program, are paired with FGCU students, known as “Sherpas”, who have been specially trained by PEN to offer skills such as:

  • Internet use (such as opening an email account, navigating Google, and creating and remembering passwords)
  • Social media skills (including Facebook, Twitter and Instagram)
  • Creating virtual connections with other cancer patients via on-line patient support communities
  • How to use apps such as Uber and other ride-share services to get to appointments

Research suggests that many older cancer patients lack basic internet and social media skills which creates an obstacle for them when they try to go on-line to access information about their illness, or support from other patients and patient advocacy groups.[i] Often they become overwhelmed with the abundance of information and do not know how or where to find the help they need.

“By producing this program, we want to show what can be done to help cancer patients and their families become more tech-savvy, more educated, more self-confident and more in control of their cancer journey,” said Joan Justice, PEN’s Executive Director.  “By pairing digital natives (FGCU students) with the older generation, we hope to create an empathetic and powerful relationship that is an asset to any community.”

“We are pleased to partner with PEN and FGCU to offer this innovative program to our patients,” said FCS CEO Bradley Prechtl. “Ensuring that our patients and their families know how to access helpful information online is a big plus.”

Dr. William Harwin, Founder and President of Florida Cancer Specialists, added, “Our collaboration with PEN and FGCU to provide this unique program reflects our mission of patient-centered care. The more education we can provide to patients, their families and caregivers, the better equipped they are to be active participants in their own healthcare.”

“The Digital Sherpa Program is beneficial to both the cancer patients and the Florida Gulf Coast University students involved.  The patients gain technological knowledge that connects them with up-to-date information pertaining to early detection or successful treatments; the FGCU students acquire valuable and transferrable skills such as the ability to communicate effectively, problem solve, and build relationships – which was the best part of all!” said Jessica Rhea, Director of Community Engagement at Florida Gulf Coast University.

“I enjoyed the casual, fun atmosphere and being able to ask the students about the technology questions I have rather than having to ask my children for help,” said one Digital “Climber” following a recent workshop.

The Climber’s Digital “Sherpa” added, “The barrier of age was broken between us. I loved the connection and bond we made!”

Workshops will be held on March 16 and April 27 from 2:30-4:30PM at Florida Cancer Specialists and Research Institute, 8260 Gladiolus Drive, Fort Myers, FL 33908.

 

About Patient Empowerment Network

Our mission is to fortify cancer patients and caregivers globally with knowledge and tools, boosting their confidence and putting them in control of their healthcare journey and assisting them to get the state-of-the-art, personalized care they deserve. For more information, please visit our website http://www.powerfulpatients.org/pen/

Watch our video to learn more about the Digital Sherpa Program https://vimeo.com/194117518/7d9137b737

 

About Florida Cancer Specialists & Research Institute:

Founded in 1984, Florida Cancer Specialists & Research Institute (FCS) is the largest independent medical oncology/hematology practice in the United States. With over 200 physicians, 160 nurse practitioners and physician assistants and nearly 100 locations in our network, we are committed to providing world-class cancer care in community-based settings close to home.

Recognized by the American Society of Clinical Oncology (ASCO) with a national Clinical Trials Participation Award, FCS offers patients access to more clinical trials than any private oncology practice in Florida. 84% of new cancer drugs approved in 2016 for use in the U.S. were studied in clinical trials conducted with FCS participation*. Our physicians are consistently ranked nationally as Top Doctors by U.S. News & World Report Trained in such prestigious medical schools and research institutes as Duke, Stanford, Harvard, Emory, M.D. Anderson, and Memorial Sloan-Kettering, the physicians of Florida Cancer Specialists provide leadership and consultation in the state’s leading hospitals.

FCS serves patients on the Gulf Coast from Naples to the greater Tampa Bay area, north as far as Tallahassee, in Orlando and surrounding Central Florida communities, and on the East Coast in Daytona/Palm Coast, Vero Beach/Sebastian and in Palm Beach County.

Florida Cancer Specialists has built a national reputation for excellence that is reflected in exceptional and compassionate patient care, driven by innovative clinical research and cutting-edge technologies that help advance targeted treatments and genetically-based immunotherapies, and embodied by our outstanding team of highly-trained and dedicated physicians, clinicians and staff.

 *Prior to approval

Established to fill a regional need for higher education opportunities in Southwest Florida, FGCU has flourished since opening its first classrooms in 1997, and now attracts students from all over the United States and abroad to Fort Myers. The university has achieved national prominence in academics, environmental sustainability and service-learning as well as in athletics, where FGCU earned the nickname “Dunk City” during its historic run in the 2013 NCAA Men’s Basketball Championship Tournament. FGCU’s unique natural setting between the Florida Everglades and the Gulf of Mexico creates a living laboratory and a lively campus interwoven with native flora and fauna. It also provides an engaging home to a diverse community of more than 15,000 undergraduate and graduate students who advance their learning in state-of-the-art classrooms and labs; they collaborate with faculty to produce new knowledge that benefits the environment, education and community life.

 

For Media Inquiries please contact: 

Patient Empowerment Network

Andrea Conners, Programs Director

andrea@powerfulpatients.org

239-728-1202

 

Florida Cancer Specialists & Research Institute

Shelly Glenn, Chief Marketing & Sales Officer

sglenn@flcancer.com

770-365-6168

 

Chappell Roberts

Chris Wilkerson

cwilkerson@chappellroberts.com

813-857-7051

 

Ganick Communications, Inc.

Elaine Ganick

elaine@ganick.com

615-377-7877

Reference

[i] Smith, Aaron. (2014) Older Adults and Technology Use. Pew Research Center

United On International Women’s Day

What Is It?

International Women’s Day (March 8) is a global day celebrating the social, economic, cultural and political achievements of women. The day also marks a call to action for accelerating gender parity.

International Women’s Day (IWD) has been observed since in the early 1900’s – a time of great expansion and turbulence in the industrialized world that saw booming population growth and the rise of radical ideologies. No one government, NGO, charity, corporation, academic institution, women’s network or media hub is solely responsible for International Women’s Day, but it works to bring those organizations together.

InternationalWomensDay-landscape

#BeBoldForChange is this year’s theme – a call on the masses or call on yourself to help forge a better working world – a more inclusive, gender equal world. Let us  know what you are doing for International Women’s Day this year in the comments section!

This is a great day to:

  • Celebrate the social, economic, cultural and political achievements of women because visibility and awareness help drive positive change for women
  • Declare bold actions you’ll take as an individual or organization to help progress the gender agenda because purposeful action can accelerate gender parity across the world

Why It’s Needed?

According to The Telegraph, a British newspaper, “The original aim – to achieve full gender equality for women the world – has still not been realised. A gender pay gap persists across the globe and women are still not present in equal numbers in business or politics. Figures show that globally, women’s education, health and violence towards women is still worse than that of men.” The World Economic Forum predicts the gender gap won’t close entirely until 2186. This is too long to wait. So around the world, International Women’s Day provides an important opportunity for ground breaking action that can truly drive greater change for women.

[su_quote cite=”Ayn Rand”]The question isn’t who is going to let me; it’s who is going to stop me.[/su_quote]

Pain Management of Chronic Pain Conditions

Editor’s Note: This blog was written by Lisa Davis-Budzinski

If you found your way to this article, that means you or someone you know and love has a chronic pain condition and are searching knowledge for treatments.

I have been managing a chronic pain condition known as Central Pain Syndrome, due to having a stroke, since 2002. I am also managing an autoimmune condition known as Grave’s Disease that wreaks havoc on the endocrine system and dealt me cancer of the thyroid. Plus a few other blood & spinal fluid related autoimmune issues.

I wanted to write this article to give you some direction and knowledge that you can take along the way with you as you put together a treatment plan that will help you manage a better quality of life.

First, we are all different and a blanket medication is not going to work for everyone. Example: penicillin helped a lot of people but not people like myself who is dangerously allergic to it. We know this because we all have different DNA codes. (See my DNA article HERE.) So that would stand to reason that we all need a more precision type of pain management treatment. We can also take into effect that men and women have different reactions to pain sensory levels. See this article for more information: Brain differences between male and female on pain.

Now we have to take all of that into account when trying to find what will work for you.

Once you find the doctor who can help you with your type of condition; Endocrinologist for Diabetes, Neurologist for MS, Parkinson’s and other nerve conditions etc., the doctor will tell you about treatments. There are many types and below is an outline:

In addition to medications, you want your pain management treatment to be well rounded:

  •  Try acupuncture, chiropractors, etc.
  • Get hormone labs done; hormones affect pain levels
  • Meditation, aromatherapy
  • Heating pads, cold packs
  • TENS unit
  • Spinal stimulator

Diversionary tactics help to raise dopamine/serotonin levels:

  • Doing something to make you laugh or makes you happy
  • A fun activity that can raise adrenaline levels
  • Keep it lighthearted to counter stress and depression
  • Cognitive-Behaviorial Therapy: CBT

Find your Teams:

  • Healthcare Team
  • Support communities

Find your pain triggers:

  • What triggers your pain
  • Write them down so you can actually “see” what they are
  • Sound, heat, cold, walking to far, over-doing anything, staying somewhere to long, sitting up to long while visiting

Seek natural treatments as well:

  • Holistic
  • Oils
  • Herbal treatments from Eastern medicine

As you can see, there are many treatments available to us than ever before. But we must know of the dangers before trying treatments and medications or putting them together as a whole. Before taking any medications it’s imperative to weigh the benefits vs the side effects. There is a huge book called the PDR that all physicians have. It stands for Physician’s Desk Reference for medications. This book is extremely expensive. It contains information just like the printouts you see from your pharmacy. What the medication was made to do, the color and shape for identification purposes, its molecular state, adverse reactions and side effects. You can ask the pharmacy to print this information for you and you can look up medications on sites like: https://www.drugs.com/pdr/ . This is something that you can talk to you doctor and family about. I’ve tried medications that the side effects were worse than any benefit it provided. It’s not worth continuing with that type of reaction. Since medications are synthetic, there is always a danger of it damaging the liver and kidneys because of the process our bodies need to take to break it down. Your doctor can also keep a watch on your organs while you take the medication with lab work.

Another danger of natural and/or synthetic medications are the interactions caused by mixing the wrong ones together.

Find out from your doctor or pharmacists, or online: http://www.webmd.com/interaction-checker/ , to make sure it will not be a lethal mix.

In this new scientific technological era, healthcare is changing more quickly than ever before. Keep apprised of new medications, new medical technology and methods. The internet helps us to be in the know of what is out or coming out to help with different diseases and conditions.

Though it has taken me a decade and more of trying different medications, trials and errors to find my right combo of teams and treatment; it doesn’t have to take you as long by learning from those of us that have gone before you. You can find help this type of help for answers and up to date information in forums, online groups and sites, like this one, and Twitter chats.

Please know you are not alone and there is help and there is a way to live a better quality of life than suffering in pain.


Citations and Resources:

https://dnamelody.com/2017/02/14/our-dna-heritage-and-our-health/

http://www.medicalnewstoday.com/articles/316207.php

https://www.drugs.com/pdr/

http://www.webmd.com/interaction-checker/

http://psycnet.apa.org/psycinfo/2000-02102-015