The holiday season is a time for friends and family to get together and catch up. Those with chronic disease, such as CLL, inevitably are asked about how we are feeling. When I am with family and friends, people seem surprised when I give a quick update and then really want to move onto other topics.

On the one hand, I am thankful and fortunate to be surrounded by real friends and a loving family who care enough to ask. But by the same token, I suspect most people in similar shoes don’t want to be defined by their ailments, and just want to be known for the other things in their life.

There is no question that family and friends are critical in the fight to beat a chronic disease. Nonetheless, there also is an equally real need for a community that is acutely attuned to the unique perspective of those who are in the cancer fight.

During my first year as a formally diagnosed CLLer, my hematologist wanted me to come in on a bimonthly basis until he could get a handle on how the disease was progressing. He also wanted to use these sessions to get a read on who I am as a person. It was rather funny, because he characterized me as being wrapped a little “tight.” As a reforming workaholic, I thought I had made some changes as a consequence of having CLL. I thought I was chilling a little bit and trying not to work so hard. I actually would stop and smell a few roses along the road.

As the year progressed, my white counts and ALC started to increase at an accelerating rate. The hematologist did not seem particularly worried but said it was something to watch. He was pretty emphatic that he treats the whole person, not white counts.

As a CLL newbie, it was of little comfort to hear that the disease was advancing. Given my 11q deletion, maybe I really did not have a relatively benign flavor of CLL. After the fourth or fifth visit, the white counts really spiked, and this now became worrisome. Would FCR be in the near future? Would my red cells get wiped out, and I could no longer exercise and ride far? The “worry” part of watch and worry was rearing its head. It was a very dark moment, and I needed help to deal with this.

A friend suggested I contact the Leukemia & Lymphoma Society. LLS subsequently arranged a conversation with a distance athlete who had Lymphoma and had completed treatment. It was helpful to hear about his experience with blood cancer and its treatment. I did not feel so alone, and not so freaked out. I was so grateful that I joined the LLS Team in Training program to ride centuries and help the cause.

In the ensuing summer, I learned so much from my TNT teammates about dealing with blood cancers in general, and about CLL in particular. I was very guarded at first but came to trust that our Saturday ride team was a safe place to open up about having CLL. Other than my immediate circle of friends, family and caregivers, this was the first group I opened to about CLL. It was a magical summer of Saturday rides, and we did an early fall century ride as our event. At about mile 80, one of my partners was having a tough time on a particularly nasty hill. I told him that if I had to carry him and his bike the last 20 miles, well, be ready. I was not going to leave him behind.

This past year, I tried and then had to drop out of TNT. Between fatigue, and some other things, the great TNT century ride in California’s wine country was just not in the cards. Nonetheless, on ride day, the team was face booking and sending out near real-time posts to those of us who could not participate. Although thousands of miles away, they did not leave us behind.

Patient Power, Health Unlocked, CLL Society, CLLPAG, LLS, Dr. La Verne’s Awesome Adventure and others all provide safe communities where CLLers and blood cancer patients can learn and gain strength from each other. We aren’t different and just are people trying to deal with something none of us wanted. As a point of fact, this blog would not even exist in the first place were it not for the efforts of people in Patient Power and CLLPAG.

The take-away is that community does matter in dealing with a chronic disease. When you are in a community, you don’t feel alone, and the collective experience of others helps you deal with things. Importantly, you don’t have to explain that CLL while in watch and wait is on your mind, even when you try not to.

In the short time I have been a member of the CLL club, I have come to rely on these communities.

Please share some of your stories about how the “Community” has helped you or how you helped somebody else in our predicament. I am looking forward to seeing all of your posts in the comment section! Your posts will inform others.

Thank you for reading!

Always hope. Never quit.

C.J. Chris

medicationsWhat gets patients angry—besides being upset about their diagnosis—is high drug prices. You know the story: elderly people cutting pills and having to make painful choices between taking their medicine as prescribed and paying their rent. Yes, there are assistance programs, but often people don’t qualify or don’t qualify for enough help. Of course, it is not just the elderly. It presents many families with tough choices.

What rubs salt in the wound? Glossy and frequently broadcast drug company ads on television. These now include efinaconazole (Jublia) for toenail fungus and, incredible to me, a cancer drug for a subset of patients, nivolumab (Opdivo) for lung cancer. We have heard that pharma is now spending $4 billion a year on direct-to-consumer advertising. The U.S. is one of the only countries that allows this. What many patients think is that this money should be used to lower drug costs instead of promoting single products.

As you know, I am in the patient education business, and I am a patient with two cancers myself. One medicine I take is $9,500 a month. That is not uncommon in “chronic cancer” these days. And, in MS, RA and so many other conditions the price is high as well.

The industry defends the ads as “education.” But you and I know few health conditions are simple, especially if a patient has multiple conditions or takes multiple medications or has drug allergies. And then, in many conditions, drugs are combined or even used “off label.” The ads do not, and cannot, speak to that. So the truth is the ads oversimplify many health issues. Sure, maybe for erectile dysfunction or toenail fungus the discussion is pretty straightforward but certainly not for cancer. In that area, I would suggest ads are a disservice to the patient. It’s only the ad agencies and TV networks who really benefit.

But don’t take my word for it. Recently the American Medical Association’s Board of Delegates voted to request a ban on DTC advertising of prescription drugs. They welcome “smarter patients” who have a thoughtful discussion with their doctor. But they don’t like the idea of patients simply requesting a product with little understanding of their overall condition or how a single medication may or may not be right for them. So now that a key physician group and many patient leaders are aligned, end the ads. But it’s up to the FDA and Congress to make a ban happen. Shouldn’t they agree?  We can understand why pharma needs money for research to develop new medicines, but we do not understand why they need to spend billions on advertising.

Now I have a better plan: take just 1% of that money and reallocate it to support INDEPENDENT and FAIR and BALANCED education offered by groups like Patient Power, advocacy groups and foundations, and leading medical societies and providers. Right now the support pharma provides for those activities is almost nothing compared to their DTC advertising. And sustained education is clearly needed to help us all take more ongoing responsibility for our health. Step 2 of the plan is to, of course, lower prices.

I believe “smarter patients” who truly understand their condition and the array of products and lifestyle changes that can help is what should be supported, not drumming into our heads a brand name like it is a laundry detergent or toothpaste for “cleaner, whiter teeth and fresher breath.”

Let’s bring on more commercials for island vacations and power drills and bury pharma ads once and for all. Our health and our pocketbook will be better for it.

I welcome your comments!

Best regards,


Never before has it been so important to be a member of our Patient Power community.  The 2015 American Society of Hematology (ASH) Meeting runs December 5 through December 8, and we will be on-site reporting breaking news as it happens.  Sign up now for e-alerts to receive updates and access to Ask the Expert sessions with Dr. Jeff Sharman and Dr. Robert Orlowski. Knowledge can be the best medicine of all, and your illness cannot wait.

Fatigue is the most frequently reported symptom of cancer. It transcends across all cancer types and greatly interferes with routine day-to-day activities. Fatigue is the second topic in my four-part series of topics addressing the challenges that cancer survivors face after treatment to find intimacy again. The first topic of the series covered communication. Today, we’ll discuss fatigue and loss of interest and how they affect cancer survivors’ intimate relationships.

Fatigue experienced by a cancer patient is extremely different from the fatigue a healthy person would describe. Their fatigue could often be resolved with a good night’s sleep or an afternoon nap. A cancer patient’s fatigue affects both mental and physical functioning and can last months after treatment. In many cases, fatigue affects intimate relationships, because we’re tired and feeling exhausted just doesn’t feel sexy.

Is fatigue affecting your relationship? Below I share some tips to help you connect with your partner in spite of your fatigue.

  1. Identify the best part of your day, when you feel you’re most energetic and optimistic about life. For me, it’s early in the morning before the challenges of the day have entered my mind, before I’ve turned on my phone or my computer. Whenever the best time of your day is, schedule time with your partner then. Your conversations will be more successful and productive.
  1. Lighten your load. Many of us have families to care for, jobs to go to and commitments to keep. Consider your recovery from cancer as a team effort and lighten your load. Assign household chores to others in the house. Take your friends up on offers to help you get groceries, to cook meals or to do some of those household chores. This will reduce stress in your day and leave more time to connect with your partner.
  1. Seek professional help if you have any concerns that your fatigue could actually be depression. Fatigue and depression can often look the same.

The second and often related topic includes loss of interest. Loss of interest can also be described as loss of libido or a lower sex drive. I was surprised to realize how true this was for me immediately after cancer treatment. It’s easy to get stuck in a place where no sexual contact is normal. If you have no interest, you may have no interest in changing it either. Below are two tips to help you to get unstuck and to regain intimacy despite your loss of interest.

  1. Interest doesn’t have to be present to allow yourself sexual contact. As young healthy humans, interest usually came first, triggered by several organs in our body. But “interest” wasn’t necessary to experience a satisfying sexual encounter. Even without the initial interest, you can still respond to sexual stimulation. Interest doesn’t have to come first. It may kick in after you’re sexually stimulated.
  1. Emotional intimacy and physical intimacy are related and build on each other. One can cause the other. If you have no interest in physical intimacy, consider what emotional intimacy looks like for you. It can be the path to connecting again physically. Consider the activities you enjoy with a partner. It could be as simple as a walk, a cup of coffee together or just lying quietly together. Any of these things may bring on emotional intimacy for you, which in turn could trigger physical intimacy. None of these feelings or emotions are sequential. There’s no required order of events to create a satisfying connection for you and your partner.

If fatigue or loss of libido has impacted your relationship after cancer, you are not alone. Cancer may have changed many things in your life, but it doesn’t have to continue to be the reason you’ve lost intimacy. Use the tips I’ve provided as a guide to regaining a satisfying intimate relationship with your partner.

As always, your questions and concerns are always welcomed in the comments below. To connect with me, visit or send me an email at

Stay tuned for the third topic in this series, Learning To Love Yourself.

Erin Sullivan Wagner

I was asked that question recently at a patient advocacy forum. My immediate, knee-jerk reaction was “No.” Upon reflection, however, the answer is more complex and nuanced. I had responded initially “no” because of the way I am able to live my life. I was diagnosed with CLL 9-½ years ago. I’ve been treated twice, […]

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White is the new pink. For many years, when I participated in walks for breast cancer, it was all about “the pink” and I got giddy every time I saw pink. Buildings turned pink, billboards were pink, women’s clothing was pink, and I even added a few pink extensions to my hair. October was synonymous […]

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I’ve been reading how U.S. healthcare costs are rising much slower and more moderately than expected. Economists are debating why. I am betting Obamacare has helped. But I admit, I am a fan. But, no matter what’s going on, the lingering worries about skyrocketing medical costs in the future got me thinking about one obvious […]

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Since being diagnosed with CLL 32 months ago, I have reluctantly accepted my circumstance and am gamely moving on despite this.  Not to be rhetorical, but what else can you do? Although CLL tends to moves slowly, it is cancer nonetheless and can be just as fatal as any other. More broadly, it is against […]

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Each year, more than 40,000 Americans are diagnosed with pancreatic cancer and 95 percent die within 12 months. Many victims have been celebrities such as Steve Jobs, Patrick Swayze, Jack Benny and Michael Landon. Because survival is limited, and treatment options are few and often ineffective, patients and their families often regard pancreatic cancer as […]

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                Andrew, on location at MD Anderson Cancer Center in Houston, Texas, takes a few minutes to discuss his ongoing battle with both CLL and MF, and explains how participation in clinical trials has educated him—as well as others—on these two cancers.  That education has given him a […]

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