27 results for tag: cancer


What Do Patients Want From Pharma?

That is the question that some of the ePatients invited to the Eyeforpharma conference that took place in Barclelona from March 24th to 26th answered while hundreds of executives from the pharmaceutical industry were present. The conference had sessions dedicated to patients (Patient Engagement Track), that featured ePatients like the Founder of Patient Power and two time cancer survivor, Andrew Schorr (@andrewschorr) and his wife, Esther, Jack Whelan (@jackwhelan), diagnosed with a rare type of blood cancer (Waldenstrom Macroglobulinemia), Nuria Zuniga (@tulupus), a lupus patient, Mike Young (@elgringoinspain), a type 1 diabetic, Juan Fuertes ...

Spotlight on Patient Power: Celebrating Partnerships in Cancer

I have written many times here about my frustration when groups that are supposed to have a devotion to cancer patients as their top priority get sidetracked by egos, distrust of one another, bureaucratic procedures and turf wars. Over the years, I have seen it happen much too often. But I am happy to report some instances now when groups are working together as true partners, and I want to call them out for credit. Over the next weeks and months, Patient Power has plans to produce a number of “town meetings” for patients and care partners affected by specific cancer types. And great organizations are helping in each case.  On ...

Immuno-Oncology – The Challenging Road Ahead

Experts say there is tremendous promise in stimulating a patient’s own immune system to fight their cancer. A few new drugs are already on the market in this area for conditions like advanced melanoma and some subtypes of lung cancer. We have a town meeting discussing this for lung cancer on March 7th in Tampa and a melanoma one on March 28th in Phoenix. In blood cancers, hematologists also see great promise for this approach as we heard from many at the recent American Society of Hematology meeting. And, earlier, Dr. Oliver Press spoke to me about it in lymphoma. But there’s a caution just now: even when  experts say they are “excite...

Spotlight on LUNGevity: Cancer and Stress

(Editor's Note: LUNGevity is one of our esteemed partners. This leading organization has for mission to make "an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as providing community, support, and education for all those affected by the disease.")   Stress affects all of us in one way or another. By definition, stress is a state of mental or emotional strain or tension resulting from adverse or very demanding circumstances. A new year presents new challenges for people on top of everyday stressors. ...

How Facebook Scares Me

Like any cancer survivor, I worry about what’s next. Am I bruising too much? Is this little “twinge” something serious? Is this just a cold, or could it be pneumonia? My wife thinks I am a hypochondriac, but she acknowledges that it can be understandable. After all, I was first diagnosed 18 years ago. I stuff the fears down, but they are there. And that’s why there’s a trend on Facebook that scares me: patients who are not doing well post some of the most gruesome photos. Do we really need to see? A couple of years ago, I wrote how text postings were worrisome too. People would describe this serious problem or that one. Understandably, they ...

Multiple Myeloma Event in Barcelona a Huge Success

The Patient Power patient live forum on multiple myeloma took place in Barcelona on October 11th. The meeting was for Spanish-speaking patients and their families and caregivers. Patients enjoyed the event, learned a lot and are enthusiastic about more patient forums to come. A brief survey was taken after the meeting and it showed: 96% of attendees were patients diagnosed with myeloma or their families or caregivers Patients' date of diagnosis ranged from 2003 to 2014 84% of patients rated the event as excellent. The remaining 16% rated the event as good 64% of patients said their knowledge about myeloma had increased as a result of the ...

My Perspective on the High Cost of Cancer Drugs

Dr. Leonard Salz, a renowned GI cancer specialist at Memorial Sloan Kettering Cancer Center in New York, said on the U.S. news program “60 Minutes” the other night that we must—in the U.S.—discuss the high cost of cancer drugs. Dr. Hagop Kantarjian, head of the leukemia department at MD Anderson, whom I know well, agrees as do so many other doctors, patient advocates and patients. Many therapies are now costing over $100,000 a year. And in this age of “chronic cancer,” you might take that medicine for years. Now some experts are saying to really keep the cancer at bay you need to take more than one medicine together. $200,000+ a year ...

If medtech wants to start attaching things to my body outside of the clinic, we better talk

(This post was originally published on MedTech Views) The practice of medicine is meant to keep people well or help them get well so they can live a full, productive life. Technology provides tools toward that goal. It can help relieve pain and suffering or prevent it. But too often we get so excited about technology we lose sight of what’s really important, helping human beings live better. And when it comes to the millions of people living with chronic conditions, and now “chronic cancers”, we need to really understand their lives with an illness to know how technology can help. I am a medical journalist since the mid-80’s who was ...

The Highs and Lows of #ESMO14

Cancer progress is usually incremental. Two steps forward one step back. And it goes at a different pace for different cancers, and now even subtypes of a cancer. Melanoma is changing fast. Targeted therapies like BRAF drugs to help 50% of the patients and the prospect that immunotherapies like the so called “checkpoint inhibitors” will help a wider group of patients. It’s a big deal. In prostate cancer men with advanced disease are living longer and living better. Many older guys are playing golf even with advanced disease because bone pain has been tamped down or out. But not all news is good. Today lung cancer studies were disappoint...

#ESMO14 Tidbits

ESMO 2014 is taking place now in Madrid, Spain. The ESMO website summarizes the goal and theme of the conference as follows: "The theme for ESMO 2014 is ‘Precision Medicine in Cancer Care.’ Whether you are a medical or surgical oncologist or a radiation oncologist, immunologist or pathologist, practising precision medicine means we are all working towards a common goal – improved patient outcomes. This is the ultimate goal of ESMO 2014. Attendees can expect detailed exploration of the practical, political, and financial issues that stand between our ideals and the reality of implementing optimal care for every person suffering from ...