Build engaged audiences through publishing by curation.
Sign up with Facebook
Sign up with Twitter
I don't have a Facebook or a Twitter account
Start a free trial of Scoop.it Business
5 Tips That My Friend Shared With Me For Life After a Stem Cell Transplant Article By Aaditya Sardwal Sophia was diagnosed with stage III myeloma, which is a type of blood cancer. She was working as a teacher in an engineering college.
A unique and helpful look into life after a stem cell transplant.
Are you sure you want to delete this scoop?
"The American Society of Clinical Oncology (ASCO) today issued three evidence-based clinical practice guidelines on the prevention and management of symptoms that affect many cancer survivors—neuropathy, fatigue and depression, and anxiety. The guidelines are the first three in a planned series of guidelines on survivorship care. The recommendations reinforce the need to care for the both physical and psychological needs of cancer survivors."
"The release of these guidelines come at a time when the number of people with a history of cancer in the United States has increased dramatically, from 3 million in 1971 to about 13.7 million today. Despite these important gains, cancer survivors still face a range of long-term challenges from their disease and its treatment. Cancer survivors face an increased risk for other health problems, premature mortality and side-effects from treatment. The transition from active treatment to post-treatment care is critical to optimal long-term health. If care is not planned and coordinated, cancer survivors are left without knowledge of their heightened risks and a follow-up plan of action.
"In addition to the guidelines, Cancer.Net, ASCO’s patient information website, has updated information for survivors that is based on ASCO’s latest recommendations."
Great. More guidelines. How much money is spent on research, writing, studies and more to get to the finding that there is a, "need to care for the both physical and psychological needs of cancer survivors." At some point, information must be turned into action - and many recommendations in survivorship these days come with mandates but no resources to implement or processes by which to initiate.
Cancer survivorship needs more funding and more insurance coverage, not more recommendations - most of which have already been well documented and published for over a decade.
ASCO | Apr 14, 2014
Dealing with neuropathy? Guest blogger and nutrition consultant Patricia Dean-Escoto shares some tasty tips to help manage your symptoms.
Great nutrition tips for EVERYONE...nutrition and exercises are great contributors to prevention...and elevating immune system function simply makes sense...whether you're going through cancer, in survivorship or looking to make some healthy lifestyle changes.
We can eat and move our way to greater wellbeing. Being conscious and aware of what you're putting into your body is a great starting place. How is this food serving me? How will it support my body and all the amazing systems and processes within? Will I feel energized after eating this or drained? Some great questions to start to bring mindfulness to what you're eating.
When the dreaded diagnosis of breast cancer came in May, several thoughts raced through Carolyn Dempsey’s panicked mind. “First was, ‘Will I live?
In a study by some of the leading experts in survivorship released in 2011 called for young adult survivors to start asking for care plans. Under the Implications Section in the abstract it reads, “Survivors should consider advocating for receipt of a survivorship care plan as it may facilitate confidence as a consumer of survivorship care.”
The Dignicap device discussed in this article is another opportunity for self-advocacy for survivors. In life, we can wish for things to change or we can be agents of change. At iPEC, we have a saying, "ask for what you need." Survivors, raising your voice when you see resources like this that can improve your quality of life helps put you at the wheel of your experience.
This is not just an issue of esthetics...read this amazing article to find out the benefits and the range of ways it makes a difference for survivors going through chemo.
The amazing thing about awareness weeks is that warm and fuzzy feeling grows inside us over the course of the week, the power of community pulsing through our veins, the battle cries ringing in our ears, "You are not alone!" It's a beautifu...
Advocacy, especially for underserved populations like young adult cancer survivors, is a 24/7 x 365 effort. Thanks to organizations like Critical Mass, Young Survival Coalition, Stupid Cancer and others, YAs continue to grow their presence and the strength of their voice.
But it's still early in the game and we're still falling very far short of being able to provide so many vital resources. Check out the great tips from Heidi Adams who authors this article and leads Critical Mass on how to get involved and continue to build awareness and create changes needed for YAs to have all the support they need...and deserve.
I wish the YA movement existed when my late husband was diagnosed at 34...so grateful that today's young adults are more connected to each other and what they need - but we've got more work ahead, for sure!
Eric Galvez admits his life is much different now. (RT @PacificCove: #BrainTumorThursday - Courage through cancer: Ready for the next big thing #BrainCancer...
"We can go through it, or we can GROW through it" ~ Tambre Leighn Eric is a living embodiment of my quote about how we choose to approach challenges and change in our lives. What an inspiring story!
Eric Galvez, significantly impaired since his bout with a brain tumor, remains as upbeat as ever, and has invested his life in helping others through a non-profit organization that provides in formation and support, as well as public speaking. Living life on his terms. So inspiring to the rest of us.
The estimated 6 million informal caregivers in California show serious psychological distress and negative health behaviors such as smoking, researchers say.
Caregivers often put their self-care to the side as noted in this article. Because we understand how important self-care is for caregivers, the Leukemia & Lymphoma Society of Kansas City and I joined together to create a FREE telecall to get caregivers some much needed coaching on reducing stress, increasing their energy and finding resources to help and support them as they care for their loved one.
Email email@example.com to register & for dial in details.
As a certified professional coach specializing in coaching cancer survivors and caregivers, I'll be focusing on practical tools to address caregiver stress/burnout, support your wellbeing, address challenges and discover how asking for help is a gift to others. All caregivers are welcome to join this call!
Email firstname.lastname@example.org to register & for dial in details today! Call is on April 8th at 430pm PST/730pm EST.
A group of women with alopecia experience being adorned with henna crowns for the first time. The women were also treated to professional make-up and photography sessions. The whole project came together thanks to a team of volunteers.
Read more about how this group helps cancer survivors in my blog interview, "Walking Works of Art,"
"Reshma Jagsi, MD, DPhil, knows that the cancer care community has made great strides in the way it thinks about survivorship.
Reshma Jagsi, MD, DPhil
“As oncologists, we’re very proud of the fact that we’re doing so well in our ability to cure a higher proportion of breast cancer patients. In turn, there’s more attention to survivorship issues and ensuring that what we’re doing doesn’t cause long-term harm to our patients that we’re not intending.”
One of those unintended consequences—the long-term financial burden experienced by many survivors of breast cancer—is the focus of Dr. Jagsi’s recent study, “The Long-Term Financial Burden of Breast Cancer: Experiences of a Diverse Cohort of Survivors Identified Through Population-Based Registries,” published in the Journal of Clinical Oncology (JCO) online ahead of print (March 24, 2014). The study found that among a sample of 1,502 survivors, 33% reported a decline in financial status since diagnosis, with minority patients experiencing a disproportionate amount of the burden.
Jagsi and her colleagues—composed of a cross-disciplinary group of researchers—focused on several specific measures of “financial decline,” including: patients’ perception of whether they were worse off financially since diagnosis and whether this was due to the breast cancer, total out-of-pocket expenses and how these were financed, and amount of debt due to medical expenses. The research team also assessed changes in employment status and the degree to which patients experienced financial “privation,” defined as going without medication, missing a doctor’s appointment or mammogram, going without health insurance, having utilities turned off, or having to move out of one’s home because of medical expenses.
The study found that among the 33% of respondents who reported a decline in financial status since diagnosis, 77% felt this was partly due to the breast cancer. Factors that put survivors at significantly increased odds of experiencing financial decline attributed to breast cancer were: being Spanish-speaking Latina (SS-Latina), age under 65, household income of under $50,000, part-time work at diagnosis, reduced work hours after diagnosis, lack of substantial prescription drug coverage, breast cancer recurrence, and undergoing chemotherapy.
In addition, 12% of respondents reported having medical debt four years post-diagnosis, with significant differences among racial/ethnic groups: while 9% of whites and 10% of SS-Latinas reported medical debt, that number rose to 15% among blacks and 17% among English-speaking Latinas (ES-Latina). The four racial/ethnic groups in the study were defined as: ES-Latina, SS-Latina, non-Hispanic whites and non-Hispanic blacks.
One of the most concerning statistics was connected to the variable of privation—18% of the respondents, and a significantly higher percentage of blacks and ES-Latinas, reported experiencing at least one privation.
“Eleven percent of our black participants had had their utilities turned off because they couldn’t pay their bills and four percent of all of our respondents told us they had to move out of their homes because of their medical expenses,” said Dr. Jagsi. “Those are really disturbing and important experiences to know about and the kinds of things that the literature to date has really not had sufficient information about.”
Finally! Finally, some of the real life challenges cancer survivors experience are starting to get much needed attention. With an ever-increasing number of survivors (thankfully), resources to support them with non-medical impacts of cancer need to grow. Many of these, such as financial, have a significant impact on quality of life.
Kudos to Dr. Jagsi for recognizing that the whole person and their whole life is involved.
This is a very important study showing the long term financial burden that happens as a result of a breast cancer diagnosis. A disturbing trend is especially seen with Latinas and the most difficult for African-American women. It is heartbreaking to read this: “Eleven percent of our black participants had had their utilities turned off because they couldn’t pay their bills and four percent of all of our respondents told us they had to move out of their homes because of their medical expenses,” said Dr. Jagsi. “Those are really disturbing and important experiences to know about and the kinds of things that the literature to date has really not had sufficient information about.” To see the study referred to in this article go to: http://jco.ascopubs.org/content/early/2014/03/18/JCO.2013.53.0956.abstract
"In the largest cities in the U.S., death rates from breast cancer have dropped across the board over 20 years, but far less so for black women than whites, according to a new analysis.
The widening survival gap is likely due to differences in the quality of healthcare and access to it, researchers contend, because health factors alone cannot explain the changes over two decades.
"The advancements in screening tools and treatment which occurred in the 1990's were largely available to White women, while Black women, who were more likely to be uninsured, did not gain equal access to these life-saving technologies," lead author Bijou Hunt, an epidemiologist at Mount Sinai Hospital in Chicago, told Reuters Health in an email.
Past research has examined racial differences in survival for specific cancers and for cancer in general and found at least some could be explained by biology. High blood pressure, diabetes and other health problems that both worsen cancer outcomes and are more common among blacks have received some of the blame.
Black women are also more likely than whites to have aggressive breast tumors that don't respond to the most effective treatments. This basic difference in cancer genetics is another reason given for differing survival when it comes to breast cancer.
To assess changes in survival trends on a national level, Hunt and her colleagues looked at mortality rates in the largest U.S. cities at four different time points: 1990-1994, 1995-1999, 2000-2004 and 2005-2009.
They found that during the 20-year span, deaths from breast cancer fell overall - by 13 percent for black women and by 27 percent for white women. While a gap was already present in the early 1990s, it widened considerably with time."
Cancer doesn't discriminate....neither should screenings, treatment or care. Time to close the gap!
It is clear that the widening survival gap has a lot to do with access to health care. Hunt told Reuters Heath, "If genetics were responsible . . . we would not have seen the rates go from being nearly equal in most places at the first time point to being so much worse for Black women than for White women at the last time point.
Increased screening and treatment options among whites, coupled with both a lack of access to and lower quality of screening and treatment among blacks appear to be the more important culprits.
To see the study with in depth analysis of the increasing black-white disparities in breast cancer mortality in the 50 largest cities in the US published in Cancer Epidemiology go to: http://www.avonfoundation.org/assets/bcds/2014-bc-disparities-study.pdf
Scrolling through my newsfeed a few nights ago, I came upon two posts, one on top of the other that captured a thing I know to be true about cancer…it gives and it takes. Here's a story of Hope and serendipity to remind us that it is our choice in how we spend our days...in every moment.
I'm very grateful that cancer survivor, Hope Schaberg, allowed me to share part of her personal story and for the "magic" of the universe that brought the lives of two amazing women together in one virtual moment.
Slowing down in exercise habits was associated with a subsequent increase in hospitalizations for exacerbation of chronic obstructive pulmonary disease (COPD), a prospective Spanish study showed.
Staggering evidence continues to build re: the power of physical activity to generate healthy outcomes. If your healthcare organization is struggling with engaging patients in healthy lifestyle choices, I invite you to contact me to discover how coaching is the missing piece - check out www.iPECwellbeing.com for more information.
"Fox News Associate Producer Annie Goodman spoke with Neil Cavuto yesterday about her ongoing fight against Triple Negative Breast Cancer.
The 10-year Fox News veteran, who’s produced for “Forbes on Fox” and “Your World with Neil Cavuto,” has been battling the rare form of breast cancer for two years, with it also spreading to her ovaries, lungs, and brain.
“I’m doing OK…feeling good this week,” Goodman said during her week off from chemotherapy. On Monday, she wrote a piece on her fight with cancer for Foxnews.com, and yesterday morning she helped ring the New York Stock Exchange opening bell along with the Triple Negative Breast Cancer Foundation.
“It’s not easy to say out loud that I have stage four breast cancer, and I’m only 32 years old,” Goodman told Cavuto. Even though her cancer was caught early, she went through 16 rounds of chemotherapy, 25 rounds of radiation, a double mastectomy, and a hysterectomy.
After the triple negative breast cancer spread to her ovaries, Goodman started feeling off and confused, with loss of vision. She later learned she had six brain tumors. Today, doctors tell Annie her condition is treatable, with her latest surgery removing three brain tumors, followed by brain radiation and an upcoming round of chemotherapy.
“The hardest part of dealing with this is planning ahead…quite honestly, I’d love to make plans to do something in December, but quite honestly, I don’t know if I’m going to be alive.”
Here's courage, front and center. Annie Goodman bravely shares her story to elevate awareness about Triple Negative Breast Cancer. Thank you, Annie, for being a voice amongst the growing number of those challenged with TNBC who are educating us about the unique needs and asking for the support and services they deserve!
Annie Goodman, 32, 10 year Fox News veteran news spoke with Neil Cavuto about her experience living with metastatic triple negative breast cancer. March 3, 2014 was Triple Negative Breast cancer Day and Annie Goodman was at the NY Stock Exchange ringing the bell for the Triple Negative Breast Cancer Foundation. She explained that triple negative is rare and about 20% of all breast cancer cases are triple negative. Triple Negative does not have many of the targeted treatments that hormone positive and Her2 positive cancers have, so it is much more difficult to treat.It is more common in young women and African American women and tends to recur early. Two years ago, Annie originally had stage IIB breast cancer but it spread to her ovary, lungs, and brain. She had brain surgery, chemotherapy, whole brain radiation and her doctors are telling her everything is treatable. She said the hardest part is planning ahead especially because she has to do so much treatment and this cancer is very aggressive. She also speaks truthfully about not knowing how long she will be alive.The interview is very informative and well worthy listening to the whole piece. Even during all this treatment Annie is a great advocate, making sure that people are aware of triple negative breast cancer disease. We have got to get more successful treatments that can help with this very aggressive breast cancer.
"So how do we begin to break through the barriers that exist in healthcare to create an environment where truly disruptive innovation is possible? One option is to fling open the doors of the R&D department, figuratively speaking, and invite anyone — doctor, nurse, healthcare administrator, even patient and caregiver — to participate in product creation. Common sense suggests that any person living with a healthcare challenge or any healthcare worker tasked with patient care is ideally situated to identify problems and opportunities that exist within their current environment of care. It stands to reason that these same people might already have solutions in mind for how to improve the situation, but perhaps lack the knowledge, resources, or time necessary to bring their ideas to life. In the consumer world, we talk about new inventions fulfilling unmet consumer needs, but in the medical world, no important need is ever ignored — rather, nurses, doctors, or the patients themselves often develop their own “work-around” when the ideal solution is missing. These “work-arounds” represent ideal opportunities for innovation."
Now is a great time (better late than never) for healthcare to entertain the idea of disruptive innovation given that so much solution generation is occurring through end users who, having experienced major challenges within the system have gone outside it to create answers. If we take a look at the origins of many non-profits and vendor based services, we find they are often built on a foundation of an individual who could not get their need or needs met within the system.
Patients, caregivers and healthcare professionals who live the day in and day out of healthcare have first hand experience with the obstacles, challenges and the what's missing. Many will just make do with what is, but some will ask 'how can I make it better?' then create a solution.
Even when outreach occurs and speciality areas like pharma bring in advocates and game changers to find out how to do different/more for the patient, there seems to a strong failure to follow through to next steps. Innovation requires more than new ideas. It requires action and follow through...but first steps - engaging in the idea of opening up to the incredible expertise, insight and energy out there in the patient and healthcare worker populations is a great start.
Healthcare Innovation by Design on LinkedIn: the leading forum of healthcare delivery and experience innovation knowledge and networking with 7900+ innovation leaders at http://www.linkedin.com/groups/Healthcare-Innovation-Design-2579818/about
An angry family member wanted to give a dying woman aloe vera gel. No one had had time to tell her the truth.
Stunningly beautiful insights and reflections from an oncology nurse courageous enough to walk the reader, and those in her care, through end of life moments.
Yes, we must allocate resources to be sure medical teams have the time available to listen, educate and support those going through the process of letting a loved one pass as well as resources for professional caregivers for outlets around their own feelings of grief and loss. It's the honorable thing to do.
I'm out of the darkest part of the woods, sure. But society is making it particularly difficult to forget what happened to me. It's moving on beyond me and trying hard to lose me in its wake. I, like other young adult survivors, feel lost, alone, ...
Author Kevin Lankes gets raw 'n real about the impact of surviving cancer as a young adult. So often, survivors are expected to celebrate when they make it through treatment but often they are instead feeling conflicted, worried and confused. As Lankes states, of course he is grateful to be living...but now what?!
Exactly...and this is where survivors, especially young adult survivors, are being let down...and a perfect example of how great the need is for the improvement of survivorship care plans....and for widespread implementation. Care plans need to be more holistic and speak to the total lifestyle issues of survivors.
Keep speaking up and speaking out survivors! And, thank you Stupid Cancer for giving me the opportunity to talk extensively about this at the upcoming OMG!
Call for all OMG attendees for this year to reach out in advance to the speakers with specific questions you are hoping to have answered at your sessions. Let us know in advance, what are the things most important to you that you take away from your session experiences so we can be sure to speak to what YOU need!
There is still time to register for this amazing event full of information, fun, chances to connect to your survivor tribe, meet new people, chat with the experts and more!
RT @ASCO: Assessing the utility of survivorship care plans in #EHR systems #JOP http://t.co/XCYHTsFToq
Painfully slow adaptation of IOM recommendations...it's been almost a decade since the edict was delivered. More than 10 million survivors are still without care plans. The Commission on Cancer deadline of January 2015 is looming.
Kudos to this team of researchers who got proactive and studied a solution for helping healthcare providers to overcome barriers to plan creation and for engaging patients in the use of their plans. A step in the right direction.
Young adults, a largely unknown group in the war on cancer, account for 72,000 new diagnoses each year; one every 8 minutes. SCRT2014 is a cross-country grassroots campaign raising awareness that young adults in their teens, 20s and 30s can and do get cancer—and that Stupid Cancer, a nonprofit organization, is here to help. Drivers Kenny Kane and John Sabia will rack up an estimated 5,000 miles across the US, making stops along the way in major markets to host special events, visit cancer centers and connect with the local cancer community. Track the tour on its official Tumblr page to view and share daily photos, videos and blog posts.
Is the Stupid Cancer Road Trip coming near you? Calling all Los Angeles/Orange County area YA Cancer Survivors - come out and meet Kenny Kane and the rest of the SC gang at Lucky Strikes for some fun and to meet other young survivors.
Not local to LA/OC? Checkout http://omgsummit.org/roadtrip/2014/ to find out if SC Roadtrip will coming near you this April!
It is real action that creates change...not - and pardon my language - stupid games. Cancer is not a game, prevention is not a game. The author of this well written post is more gracious than I...sometimes I just have to call a "spade a spade" as they say.
stupidcancer roadtrip! YA cancer survivors...check out the list to see if Kenny Kane and stupidcancer are coming YOUR way on the way to OMG Summit 2014 in Vegas!
Come join us - and get some coaching strategies during my Sunday, April 27th 9am session "Withdrawal: Life After OMG!" to harness the energy of the experience and step up your empowered survivorship with an action plan and how to stay connected to your tribe tips!
Being a survivor means being your own self-advocate. Love how Michelle prepared for her insurance conversation, was ready to lay out her case with facts and got the results she wanted.
Sometimes, unfortunately, people won't listen until you raise your voice. What if insurance company employees were trained in Coach Centric skills of active listening, open ended questions and more? How might patients like Michelle have a completely different experience when they run up against a billing challenge? So many opportunities to improve the customer - and the human - experience.
Evidence has long suggested that exercise may help prevent breast cancer. After looking at cancer risk in 4 million women, French researchers concluded any type of exercise is beneficial.
And...again...more data and the message it doesn't have to be training for a marathon level of physical activity to have an impact. Get moving toward greater health and less risk today!
A callout to all of us: get moving!
Each recurrence of cancer seems more dire, and yet after each, Scott has returned to his high-profile work at ESPN, ensuring that his private fight also has become a very public one.
Powerful article on one man's choice to publicly share his battle (his languaging that empowers him) while also choosing to not be given estimates and outcomes by his medical team. A great example of how each survivor must be honored for the choices they make with regard to treatment, how much/little information they want to hear and how they choose to speak about their experience - be it a journey, a fight, a challenge or a gift...that is theirs to decide, not ours.
I was, however, very disappointed in author Richard Sandomir's choice to make an end run regarding Scott's refusal to speak to what stage or how long he may have. He missed the point and the opportunity to respect Scott's choice and, instead decided to interview a cancer specialist from MD Anderson who has never met Scott or, we can assume, has seen any of his medical records to get the specialist's opinion on Scott's status. Scott could not have been more clear about his wishes and this blatant disregard brings up ethical questions for me, both on the part of the writer and the medical expert.
A fourteen year old Hodgkin's survivor shares the story of her journey in this not to be missed interview. A model of grace, courage, faith and possibility.
A young twitter follower reminded me today of this three part interview I did with an extraordinary young cancer survivor. This is a story of resilience...and joy...and courage.