8 results for month: 06/2014


Advanced Care Planning – What to Do Now!

This is important! And often overlooked, neglected, procrastinated, or ignored...for many reasons. If you are an adult, you need to think about your future and your wishes and desires in terms of your health care. And you need to discuss these wishes and desires with those close to you. It is only by doing this that you can ensure that your choices will be heard. It is sometimes a difficult conversation to start, but those around you and close to you need to hear you. Start by thinking about quality of life, choices, and what is important to YOU. Think about who you can trust to listen to you and carry out your wishes if you are no longer capable ...

8 Beliefs That Can Hold Caregivers Back (from reaching out for help)

Family caregivers too often suffer from two very common things: overwhelm and isolation. Or, to it put another way, exhaustion and loneliness. So often, the nature of illness and trauma not only disrupts our normal ways of living, but also disrupts our connections with people who care about us. Caregivers who reach out for support gain the benefits of lessening their burdens and of feeling the warmth provided by people who care. Too often, caregivers hold back from reaching out because of beliefs they have about doing so:  Nobody else can do what I do for my loved one.  My loved one won’t accept help from anyone but me.  I’m too ...

A Tribute to AJ Halavacs

  AJ Halavacs of Fort Lauderdale, FL died unexpectedly earlier this month. Since learning of his death a few days ago, I have been shaken to my core. I had met AJ only briefly on April 12 at Moffitt Cancer Center in Tampa, FL. But what an impression he made! With his big personality and his story. AJ was among the patient guest speakers at a CLL Town Hall meeting at Moffitt, sponsored by Patient Power. The educational symposium featured two CLL specialists and was attended by more than 150 CLL patients and their families and friends. He was a tall, strapping, handsome man with a ruddy complexion and a radiant smile. He never ...

Twitter Tips and Resources for Cancer Patients

The "Twitterverse" is pretty mainstream now and not just for the younger generations any more. Of the many, many uses for twitter, cancer information, education and support are gaining ground. Twitter is fast, easy, mobile and instantly gratifying.  Information literally at your fingertips. Several articles have been published on the increased use of twitter by cancer patients, from cancer patients tweeting through chemo, "power" cancer patient tweeters in Japan, and a controversial article in ASCO about a breast cancer patient tweeting about her disease. Tweeting is easy. Set up an account and go! If you are interested in getting some good ...

Patient-Selected Controlled Clinical Trials: A Valid Proposal

Lagging patient accrual numbers for cancer clinical trials has always been an issue. In a previous post, I mentioned several reports that showed that the current system of enrollment for clinical trials just isn't working for patients, researchers or sponsors from pharmaceutical companies. In the current issue of the ASCO Post, Jim Omel, MD and Karl Schwartz, MFA have written a great article proposing a new type of clinical trial: A Patient-Selected Controlled Trial. The authors explain that this approach is not meant to replace the randomized controlled trial design "when it's feasible and ethical to use it". They suggest that it be used as "an ...

Can(cer) Do! – Why We Should Talk About Cancer

I saw two productions about cancer in a 48-hour period this weekend…and went home smiling. The first, produced at Washington, DC’s Theatre J, was called The Prostate Dialogues. It was written and acted by a very fine local raconteur, Jon Spellman. In 75 minutes – with no break – John unfurled his prostate cancer story from diagnosis to his treatment decision (surgical extraction at Johns Hopkins). Along the way, Jon peppered his experience with humor and a graphic depiction, through a normal and happy cell called “Glen,” of the development of those nasty mutated cancer cells. A five-minute description of a 20-year process. Brillia...

Anxiety of Hope?: Drinking from the “Firehose” of Cancer News

This is prime season for cancer news reporting. As I write this we have a Patient Power team in Chicago at the annual meeting of ASCO, the American Society of Clinical Oncology. Media from around the world are there and so are patient-advocates because it is what I like to call the “world series” of cancer. Tens of thousands of doctors and researchers from around the world attend to present their data or hear reports from others. And, of course, all the drug companies are busy bees there too. We are producing 20 or so video reports from ASCO and you can find news reports all over the web. In about 10 days we’ll be at it again – ...

Mobile Apps for Cancer Patients

Which apps can be used by chronic cancer patients to help them with their illness and overall health? There are literally thousands of medical apps in the marketplace and it is very difficult to sift through them and find out which ones are easy to use, practical and helpful. I did some research, asked some patients, and read a lot of reviews to try and get an idea of which ones were helpful for chronic cancer patients. Research and Information I asked Cindy Chmielewski, (@MyelomaTeacher),  a multiple myeloma survivor and patient advocate for the disease what apps she uses to stay abreast of the latest news in cancer research and ...