Has eating become a challenge due to fatigue or a lack of interest in food? Have you noticed a significant change in your or your loved one’s appearance since starting treatment or diagnosis?
It’s a common misconception that weight loss during cancer treatment is solely due to treatment side effects. While this can certainly be a factor, a more serious condition known as cachexia (kuh·kek·see·uh) can significantly impact a patient’s health.
What is Cachexia and Who is at Risk?
Cachexia, often referred to as cancer cachexia or wasting syndrome, is a complex condition characterized by severe weight loss, muscle wasting, and loss of appetite. It’s not a direct side effect of cancer treatment but rather a consequence of the cancer itself. While it’s commonly associated with cancer, it’s important to note that cachexia can affect individuals with various chronic illnesses, including: Multiple Sclerosis, Sarcoidosis, heart failure, chronic kidney disease, COPD, and more. Certain types of cancer are more likely to lead to cachexia than others. These include: Pancreatic, Lung, Head and Neck, Colorectal, Ovarian, and Liver.
Signs and Symptoms of Cachexia: What Should You Look For?
Recognizing the signs of cachexia is crucial for early intervention and effective management. Here are some key symptoms to watch for:
Unexplained weight loss: A significant and unintentional decrease in weight.
Muscle loss: A noticeable loss of muscle mass, often leading to weakness and fatigue.
Decreased appetite: A reduced desire to eat, even when hungry.
Fatigue: Persistent tiredness and a lack of energy.
Metabolic changes: Alterations in metabolism, including changes in appetite, weight, and energy levels.
Changes in Routine: Unable to do the activities you once could.
If you or a loved one is experiencing these symptoms, it’s important to let your care team know your concerns as soon as possible.
Managing Cachexia
While there’s no one-size-fits-all solution, a multidisciplinary approach can help manage the condition. This may involve:
Dietary interventions: A registered dietitian can provide personalized meal plans to maximize nutrient intake.
Medical treatments: In some cases, medications may be prescribed to stimulate appetite or reduce inflammation.
Supportive care: This includes strategies to manage pain, fatigue, and other symptoms.
Psychological support: Counseling can help address emotional challenges associated with cachexia.
This may mean adding more people to your careteam to support you, such as a dietician (as shown above), physical or occupational therapist, endocrinologist, or palliative care (editors note: we hope you already have a palliative care doctor, AnCan loves them and they can offer you so much support during your treatment!)
Coping with the Emotional Impact
Cachexia can take a significant toll on both physical and emotional well-being for the patient, care-partner, and their families. It’s important to seek support to manage the emotional side effects of the condition. Consider:
Counseling: Individual, couples, or family therapy can provide guidance and coping strategies.
You can also ask your social worker (or for a social worker if you do not have one) for additional resources.
Want to Learn More?
We highly recommend this webpage and fact sheet from our friends at Cancer Support Community / Gilda’s Club. While it is cancer centric, all of the information will be of helpful no matter what your diagnosis is.
By understanding the complexities of cachexia and seeking appropriate support, individuals can significantly improve their quality of life. Effective management of cachexia can help alleviate debilitating symptoms, enhance overall well-being, and improve the ability to participate in daily activities.
Special thanks to CSC for their assistance and incredible resources with this blog post.
Are you ready to get the inside scoop on clinical trials? Get ready to delve deep with former clinical trial nurse coordinator Marni Tierno. We know it can be a complex and overwhelming topic, but don’t worry – we’re here to break it down in a way that’s easy to understand.
Also featuring the vast professional experience of Wendy Garvin Mayo, we’ll tackle the myths and misconceptions that often surround clinical trials, giving you the facts and insights you need to make informed decisions.
Whether you’re a patient, carepartner, or simply curious about clinical trials, this webinar is for you! Our aim is to empower you with a deep understanding, allowing you to make the best choices for yourself or your loved ones.
Some of the topics we will cover include:
Description of the types and phases of clinical trials
Examples of pivotal clinical trials that have changed how we treat cancer
What to expect when participating in a clinical trial (including potential risks and benefits)
Addressing common questions about clinical trial participation
and more!
Watch here: (closed captioning is provided for this webinar, click the CC button at the bottom next to the gear.)
To view the slides from this webinar, please click here.
Special thanks to Bayer, Novartis, Johnson & Johnson, Foundation Medicine, Myriad Genetics, Telix, and Blue Earth Diagnostics for sponsoring this webinar.
And very special thanks to Illumina and Collaborative Cancer Care for letting us have two of their absolute best people present for us!
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To SIGN UP for any of our Virtual Support groups, visit our Contact Us page.
Helpful Tips to be Your Own Best Medical Researcher
AnCan asked Mike Wyn, a valued AnCan Frequent Flyer and intrepid researcher, to provide a little navigation to those who are new to research… as well as useful tips for some old hands like myself. I’ve already gathered some research nuggets from Mike’s wisdom… thank you, Mr. W.
Here are a few tips ensure the medical information you are researching is reliable and accurate
Book Research
Check the publication date: authors may need at least a year to write a book, and the average time between a book’s acceptance and its publication is typically between 9 to 12 months. Hence, the data may already be outdated when it hits the shelves
Professional Presentations
Check the credentials, disclaimers, and disclosures of the presenters. Who is the author? What is the sponsoring organization providing the information? Preferred sources are from reputable institutions, such as universities, hospitals, or government health agencies.
Google Web Searches
Use command “site:” to limit you search to top-level domains like .gov, ,org and ,edu. For example, type: latest NCCN guidelines for prostate active surveillance site: .gov OR site: .org OR site: .edu
Be cautious with .com sites unless they are from recognized and credible entities. Medical databases such as PubMed, Cochrane Library, and Google Scholar are good sources for cross-referencing scientific research.
Articles, Online Posts
Check articles, online posts, videos etc. for their sources, including scientific studies, medical journals, or clinical trials. Information from peer-reviewed journals is typically more reliable than content from non-peer-reviewed sources. Poor reviewed means that other people similarly qualified to the author have reviewed teh article adn provided comments.
Anecdotal Evidence
Anecdotal evidence is information that has been observed by the person reporting but not verified. Be skeptical of anecdotal evidence such as personal stories. It is not scientifically reliable. Focus on information supported by scientific evidence and clinical studies. The quality levels of evidence from highest to lowest for medical data are:
Systematic reviews: collect and evaluate all available data/evidence within the researchers’ criteria. An example is the “Cochrane Database of Systematic Reviews”. Meta studies are a systematic review.
Randomized controlled trials: participants are randomly assigned to experimental and control arms. The double-blind trial is the gold-standard of medical research where neither the participants nor the researchers know the placebo or medication/treatment is given. This is to prevent bias and to ensure the validity and reliability of the study.
Cohort observational study: participants with common traits or exposure to the proposed medications or treatments are followed over a long period of time.
Case study or report: a detailed report of result after treatment of an individual. This is formalized and reviewed anecdotal evidence.
Medical Trial Reports
The phases of medical trial studies cited by published medical papers are:
Pre-clinical studies: laboratory experiments using cell cultures, animal or computer models. In vitro means tested In Vitro – literally ‘in glass’ means testing outside a living organism, in a test tube or petri dish, In Vivo – literally in life -means testing in a living organism, often mice. Then studies move on to humans…
Phase I trials: assess safety, dosage and side effects of the proposed medications or treatment.
Phase II trials: expand P 1 to evaluate efficacy of the proposed medications or treatment – how well it works..
Phase III trials: confirm efficacy, safety, dosage and to evaluate side effects of the proposed medications or treatment in much larger samples. This is often where randomized blind and double blind design is used. Blind means the patient does not know what they are getting; double blind means neither the patient nor the clinician know what is being dosed.
Phase IV trials: monitor long term effectiveness and safety of the medication or treatment.
Statistical Terms
Some terms regarding statistical data cited in medical journals are explained as follows:
N = the number of participants: be wary of studies with a very low N.
HR = hazard ratio: HR=1 – there is no change in the proposed medication/treatment compared to control baseline. HR<1 – there is a reduction of risks with the proposed medication/treatment. HR>1 – there is an increase risk with the proposed medication/treatment.
CI = Confidence Interval: A trial shows that a particular drug has a 20% effect within a certain time frame with 95% CI. This shows that the study, if repeated many times, it will be 95% confident that the 20% reduction will be consistently observed.
P-value = Probability Value: This measures how strong the evidence is that the hypothesis, or effect being tested, is correct, rather than the result being random, or incorrect (null hypothesis). We seek a P-value that is <=0.05 meaning that there is a 95% or better likelihood the result is attributable to what is being tested..
Last month’s Under 60 Stage 3 & 4 Prostate Cancer meeting was small, intimate and produced a true gem from Down Under to benefit all AnCan’rs …
For the life of me, I forget what raised the topic … maybe a Death with Dignity discussion – but Aussie AnCan’r, Steve Cavill told us about the ICE “In Case of Emergency” Checklist Document that he and his wife Leonie, who occasionally attends our Care Partners Group, have both completed. Steve and Leonie reside in the suburbs of Melbourne and are currently heading towards mid-Winter.
This ICE Checklist takes much, if not all, the difficulty out of placing your key information in one place. Like your vital passwords to your laptop, phone or bank accounts; names of key individuals in your life and more. You know .. all that information making it possible for someone to piece your life together if you’re suddenly no longer with us.
Frankly it’s information we should all compile no matter how old. With this checklist guide at hand to march us through it, there can be few excuses. Just remember, this version of the ICE checklist was created in Oz, so it may not be fully applicable Stateside. If one of our US volunteers has time to ‘Americanize’ it, I feel sure it will be greatly appreciated – we have very few solicitors in the US and a few too many attorneys!
Here’s the checklist document in Word format ICE Document Template Now do your part …. and a BIG THANK YOU, Steve Cavill!!
Hey Friends! If you missed last Thursday’s art class, then I have the recording for you right here! Share it far and wide, and don’t forget to email your pictures to Alexa (Alexa at AnCan.org).
Supplies:
Canvas Size 12in x 12in or similar. Feel free to use a rectangle as well
Acrylic Paints: White, Blue (or whatever other Sky & sea color you want), Orange, Yellow, optional Purple
Palette Knife
Brush: 3/4in or similar
Optional tiny brush OR tooth pick OR cotton swab for optional birds
Water
Napkins
Watch here:
Have fun with this and please don’t hesitate to reach out to Hannah@AnCan.org with any additional comments & questions. Happy painting!
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