The Patient Power Blog

by Andrew Schorr – Host & Founder, PatientPower.info
sick woman coughing

As I write this, I am sick—pretty high fever the other night, chills, yucky cough. I should have known!

Remember that nice older lady I was talking to at the apartment complex cocktail party a few days ago? Remember how she was coughing? She did her best to cover her cold, but I stood right there. Now, coughing just like she did and suffering with other symptoms, now after two trips to the pharmacy and one to the doctor, now after a chest X-ray, blood test and nose swab—I should have known!

Is it impolite to step away? As a two-time cancer survivor who gets chest congestion and even pneumonia too often, at the first sign of a social “cougher” should I have made a fast exit? I would now say yes.

And my cousin Jeanie, 86, had a similar experience nearby. A nice woman picked her up and brought her to a dinner party. The woman was coughing like crazy. Jeanie’s lungs are not the best, and she had misgivings—but she didn’t want to be impolite. Sure enough, Jeanie felt ill a day or so later.

Especially for us cancer patients, what’s the social etiquette in these situations?  I’d love to hear your stories and your views.

But I can tell you mine after my latest suffering: If someone is sneezing or coughing, get as far away as possible—maybe explain you are susceptible to infections but wave goodbye.

On the mend and wishing you and your family the best of health!

Andrew

Lung cancer patient Pam Griffith

Lung cancer patient Pam Griffith

It hit me again the other day as I hosted a lung cancer event in Tampa, Florida. If we get sick, aren’t we lucky if medical science—just then—has something new, either approved or in a promising clinical trial, that can help us get well?

Floridian Pam Griffith was dying from advanced lung cancer. Standard drugs weren’t working, and the tumors were obvious in several places in her body. With some effort, she was fortunate to enter a clinical trial for a new kind of medicine, a “checkpoint inhibitor” that allows her immune system to not be outfoxed by cancer cells. It has worked. Pam has gone from almost being on her deathbed to playing golf three times a week and may step that up now to four. She feels very good, and—having just met her in person—she looks great. Another man I met, Tony Benchina, was also dying. Soon after retiring after 41 years as a family physician, he got the kind of bad news he had given many others. Again, standard medicines weren’t working, and the new medicine that worked for Pam caused problematic side effects for Tony. But, thank God, there was yet something else that was new. It’s not approved yet, so Tony is in a clinical trial. But it is working. He is gardening and cooking once again. Remember, we are talking about the cancer that takes more lives than any other—lung cancer. This is so hopeful!

In a couple of weeks, I will see with my own eyes that story emerging in two other cancers, melanoma and chronic lymphocytic leukemia (CLL). I have CLL and am doing well, but that is not the same story for everyone. Those two diseases, when they advance, are killers. In Phoenix, I will have the honor on the weekend of March 28-29, to host town meetings for people with melanoma and CLL for the Patient Empowerment Network and partners including the Melanoma Research Alliance, the CLL Global Research Foundation, Banner MD Anderson Cancer Center and MD Anderson Cancer Center in Houston. In these conditions too, people who would otherwise be near death are living well. Breakthrough medicines are here and with more coming—mostly daily pills—to help turn off the cancer cells or to allow the immune system to recognize and kill the cancer cells it missed the first time around.

I am meeting people who have the good fortune to be sick at a time when there are truly breakthroughs to give them back better health. When you meet scores of people like this, you feel grateful to the often unseen researchers who made this happen.

At these town meetings, we discuss how you can gain access to such breakthroughs. Often it starts with being in a clinical trial—it did for me with CLL way back in 2000. Or it may be getting on a new medicine soon after it is approved, that happened for me in 2012 when I developed a second cancer, myelofibrosis, and, voila, there was a new drug to control it. Lucky me!

Of course, there are obstacles, you or family members may be afraid of you becoming a “guinea pig” in a clinical trial, or the requirements and travel for checkups may be too tough. You may have insurance issues, or your local doctor, who you like, may not be in the know. After all, how can a general doctor keep up on everything that is new or promising? We discuss all of these issues on Patient Power all the time, so please join our community, so you are “in the know.” And, if you can, attend one of our upcoming town meetings.

There is not a new medicine for everything. Sadly, many people with advanced cancers do not have a breakthrough to count on. But there is a change. Wouldn’t it be great if the change was happening in the condition that afflicts you right now? If that is happening, be sure you can take advantage of it!

Wishing you and your family the best of health!

Andrew

ellefson_150x150My cancer diagnosis was the toughest challenge I’ve ever encountered in my life. I knew about cancer, had friends and loved ones who lost their lives to cancer, but never in a million years did I think it would happen to me. So, obviously, I wasn’t prepared. Why would I be? People don’t study cancer in preparation of receiving a diagnosis someday. None of us ever think it will happen to us, because cancer is something that happens to other people, right? Wrong!

Approximately 41 percent of men and women in America will be diagnosed with cancer in their lifetime. Most people I’ve spoken to are shocked to hear that statistic. And if you’re reading this blog, chances are you’ve already been affected by cancer in some way. Now what?

SURVIVEiT™’s vision is a world free from the fear of cancer. We chose this vision, because with cancer fear is enemy number one. And most of our fear comes from the unknown: the unknown effects of cancer, the unknown diagnostic options, the unknown treatment options, and the unknown path to survivorship. When armed with the right knowledge, these fears fade away allowing you to develop the best plan for your condition and to get on the path to survivorship.

This journey starts with knowing what questions to ask your oncologist:

  • Exactly what type of cancer do I have?
  • What stage is my cancer in? What does that mean? How does my stage affect my options?
  • Is there any further testing that can be performed to better diagnose my cancer?
  • Was my biopsy analyzed for any specific gene mutation(s)?
  • Is there any further gene mutation testing that can be performed to more specifically diagnose my cancer? How many gene mutations can you test for? (i.e. full panel ~46 genes at ~$2,500)
  • If the gene mutation testing is negative, what treatment options are available to me?
  • What do you recommend and why?
  • How can I learn more about this type of treatment?
  • What risks or side effects are there to the treatment(s) you suggest?
  • How would treatment affect my daily activities?
  • How is the treatment likely to help me? When/how will we be able to know if it’s working?
  • What is the five-year survival rate for this type of treatment on my specific stage and condition?
  • Can you put me in contact with someone you treated with this treatment plan?
  • Are there any clinical trials I should consider?
  • What cancer center/university is doing the most research on my type of cancer? Can you refer me to this cancer/research center for a second opinion?
  • Should that cancer/research center offer a targeted treatment plan or clinical trial that you don’t offer, would you be willing to collaborate with them for follow-up care?
  • Based on what you’ve learned about my cancer, how long do you think I’ll live?
  • How do you recommend I share my hopes and expectations with my family?
  • What should I do to be ready for my next phase of treatment?

Matt Ellefson

Matt is a lung cancer survivor. He lives an active life that includes running and cycling competitions, endurance sports, speaking engagements, and exploring the world with his family. He is the CEO and founder of SURVIVEiT, an online mobile resource developed by cancer survivors to help cancer patients.

Powerful Patients at a 2014 event at Moffitt Cancer Center

Powerful Patients at a 2014 event at Moffitt Cancer Center

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 Saturday, we’ll be at Moffitt Cancer Center in Tampa to produce an event for people with lung cancer. Over 200 people are expected in person and maybe 50 or more watching live online. Moffitt has been great in providing staff, an auditorium, expert medical personnel and a mailing to their patients. Joining us for this event, and we hope for others, is a wonderful advocacy group, LUNGevity. We proposed a way to expand their “Hope Summit” events, and they agreed. We have been very impressed.

Later in March, we’ll be in Phoenix working with our old friends at Banner MD Anderson Cancer Center. We will produce two town meetings there—one on melanoma with the Melanoma Research Alliance and a second with our friends at the CLL Global Research Foundation. We are excited to do more in melanoma and appreciate the guidance and oversight from MRA. In CLL, we are looking forward to working closely with CLL Global on many projects this year in the U.S. and overseas.

Beyond these events, we have other growing relationships. One relationship is with PatientsLikeMe as we make a clear connection between their cancer communities and ours and give new services back to both. HealthUnlocked is great, too. Another relationship is with the chapters of the Leukemia & Lymphoma Society who always stand ready to help wherever we go. And in our work in myeloma, we appreciate the partnership with Myeloma Crowd and in the MPNs with MPN Forum, the MPN Research Foundation, and PV Reporter.

And then there’s the AACR (American Association for Cancer Research) and their Cancer Today Magazine. They have been great about raising awareness of our activities, and we look forward to helping them and all the research efforts they support.

Of course, social media groups have been strong partners, too, acor.org and Facebook pages administered by many devoted patients and caregivers.

Our hat is off to all these folks as they prove we CAN work together for you. When cancer groups collaborate, you win. You should expect this kind of partnership. And if you come across an organization that seems to always go it alone, ask them why.

Wishing you and your family the best of health!

Andrew

At 26, they told me I had an MPN and to take a pill. So I took it. At 29, they told me I had a different MPN and to take another pill. So I took it. At 38, I listened to what they had to say. And then I researched, I questioned, I consulted, […]

Read Article

Just two weeks ago, I wrote of losing an old television colleague to liver cancer. From diagnosis to death was less than two months. Today I am writing about the death this past weekend of another old friend and mentor, Dick Crew, who fought diffuse large B-cell lymphoma for about a year. While I have […]

Read Article

By Carol Preston I lost the dearest of friends last month. For those of you connected with the life sciences, you may know the name Joel Blank, a Yale-educated PhD who helped develop and win FDA approval for MRI, magnetic resonance imaging. Joel also co-founded five start-up companies. But Joel’s true passion was his family: […]

Read Article

I am a two-time cancer survivor of chronic lymphocytic leukemia and myelofibrosis. I think about cancer almost every day as I wonder what the future may hold and how I am feeling that day. I think about my friends with cancer, too. Of course, I am thrilled that the publicity around World Cancer Day can […]

Read Article

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 […]

Read Article

I wasn’t always a medical journalist. And I wasn’t always a cancer patient. Although, as I am lucky enough to age, it seems like a very long time. Yes, I began telling patient medical stories for a living in 1984 and became a leukemia patient in 1996. But my career actually started in Charlotte, NC […]

Read Article
March 2015
M T W T F S S
« Feb    
 1
2345678
9101112131415
16171819202122
23242526272829
3031  
Older Reset