Patient Power

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Randall Goskowicz and Zoey

I was reflecting on the heroic ways my fellow patients go about their day and struggle not to be defined or confined by their disease. We all have our secret methods of coping, which—in speaking to my fellow clinic patients—run from changing socks after a night sweat to the overall benefits of chocolate.

I would be holding back if I didn’t reveal my personal therapist: my dog Zoey. I regret to expound in this manner and make extensive apologies to non-dog people who I don’t get the connection between Homo sapiens and Canus familiarus. Still, I can’t help myself.

Zoey is an Australian labradoodle, a non-shedding canine bred from a long line of therapy dogs. We initially acquired her as a pup two years ago, because we wanted a dog who could come to the hospital with me and who would volunteer there with my son. Zoey is an empathetic soul, capable of feeling out the nature of a patient’s need, and providing peace and love. For some patients she is outgoing, while for others she sits back to draw them out. Many of our elderly hospital patients can’t own an animal anymore, and she gives them the chance to be with her. It is amazing to watch the stress drain away from our patients when she trots into the room.

My relationship with Zoey has evolved over the last two years. When she first came to us, my father was alive and symptom-free from his malignancy. This was also before my own diagnosis when I had a great deal more energy, and the full scope of my life seemed endless. She began as the Family Dog, with my responsibilities defined by her need for elimination. Yet, she was different even as a puppy. She quickly learned how to focus her amazing array of human sensors on each of our family members and determine who needed what from her. She would make the rounds, checking on each of us, playing ball with one, and contentedly offering her belly to another.

When my father died and the ceiling fell in, she ministered to each of us. Her ball got tucked away for a long while, as we explored the new normal of a household touched by one death and by the threat of another. In our mourning, Zoey offered us comfort and gave us a reason to get up that day.

As my disease progressed and fatigue set in, I found Zoey willing to lay down with me at mid-day. When I was ready to get back out in the world, she was my walking companion. The onset of therapy has been an adjustment. High-dose methylprednisolone leaves me agitated, tremulous and unable to rest. She will pace with me, check on me when I’m having a sweat, and walk down to the kitchen with me regardless of the time of night. I believe she knows that I am not myself, but she accepts me all the same.

And at the end of the day when night has fallen, I can always rely upon my “daughter” to bring me her leash and survey me for signs of life. She gives me the opportunity to seize normalcy from the day. I suspect that I’m not the only patient out there with a therapy (or at least therapeutic) animal. I would be grateful to hear from you about your own personal therapist.

In the meanwhile, be well!

Sincerely,

Randall Goskowicz, MD, CLL Patient

The other day my hematologist said to me, “You’re boring.” That may be the nicest thing anyone has ever said to me.

His “compliment” came nine years after I had been diagnosed with CLL, chronic lymphocytic leukemia. On this visit, my blood numbers looked nearly perfect. I could exhale for the next few months until it was time to return to check those counts again.

July 2006 marks my “before” and “after” moment with CLL.

On July 3, I was being checked for what I thought was a stomach issue.

On July 5, I was told that I probably had CLL

I had never heard of CLL. All I knew was that I had cancer. Cancer! Within a week, I was diagnosed at stage IV on the Rai Scale skyrocketing white cells, plummeting red cells and platelets, an enlarged spleen. I was a very sick woman—and very frightened.

I underwent two different chemotherapies, one in 2006, the next in 2010. There were times when I thought I might not make it.

Here I am, thankfully, nine years later. What’s changed? Well, not much of anything. Yet, in many ways, just about everything.

I’m still working as a part-time communications consultant. I am still a wife and mother and have watched my “boys” grow into independent adults. I’ve traveled overseas to more than a dozen countries, some trips for business but mostly pleasure. I watched one son become a doctor and another an analyst for a music company in New York—happy, normal events.

So what’s different? All of you, who now have become a big and important part of my life.

I had never met another CLL patient until curiosity got the best of me, and I attended the February 2014 CLL Town Hall meeting in Houston, Texas. The draw for me was Michael Keating, my hematologist at MD Anderson Cancer Center, who was a panel member. I don’t remember how I found Patient Power or if anyone had referred me to the website. I simply thought that this might be an interesting, one-time phenomenon.

Was I wrong! Suddenly, I was surrounded by 300 CLL patients and care partners. People started introducing themselves and exchanging information about the particulars of their disease. I’d never been interested in talking about my CLL. For me, normal had been to live my life as if I didn’t have CLL. Now I was encountering what would become a new normal—to discuss CLL not only with other patients but also physicians. It wasn’t scary. It was enlightening and energizing.

I met the town hall meeting moderator, Andrew Schorr, that day. I took a selfie of us and sent it to him. Soon we talked about how I might use my journalism background to help spread information and evangelize about patient advocacy.

Among the greatest joys of this work has been through the Patient Café project, a virtual “coffee klatch” on the PEN and P-2 websites. Each month, four to five of us meet online at the ‘café’ to talk about ways to become more empowered patients—from choosing the right doctor to seeking a specialist, handling physician visits, involving our families as partners and asking questions—questions about treatments, clinical trials, day-to-day living. I’ve learned so much from Randy and Dennis and Betty and Donna and Len among others. And better yet, members of each group are keeping in touch. Like me, most had never met another CLL patient until they met online. And each of us craves information to live our lives more happily and healthily.

There are two more “café” meetings scheduled. What topics do you think we should add to the conversation? Tell me in the comments section of this blog.

In the meantime, thank you to all of you for your wisdom and your support. I look forward to connecting with more of you in person and online over what hopefully will be another nine, medically “boring” years.

Sincerely,

Carol Preston
CLL Patient Advocate

Odds are you are traveling sometime this summer. When I travel my favorite thing is to chat with people and listen to their stories. Typically, when I share what I do—telling stories for cancer patients and family members—more stories are served up to me. Right now, Esther and I are in Ireland. I wanted to share some of the stories I’ve heard here that cover everything from epilepsy, to Hodgkin lymphoma to living with CLL long-term and newly diagnosed. There are common themes across all of them.

Andrew and Michael Rynne

Michael Rynne and Andrew

Story #1 – Dropping into the Whiskey Fair in Dun Laoghaire just outside Dublin—I was on a day-long tour with my Irish friend Michael Rynne, the husband of a CLL patient (more about that below), and it was lunchtime. The construction workers at the ATM machine on the main street told us the best place to go was the Whiskey Bar, so that was our next stop. We were early, so there was time to strike up a conversation with the co-owner, Sabrina Mooney, 35, an attractive and friendly woman. Given my non-Irish accent, she asked where I was from. I explained I was an American who has been living in Barcelona. She then asked, “Are you retired?”  I told her no, that I worked on the Internet. My friend Michael rushed to add that I didn’t do something sleazy like online pornography, but quite the contrary, tried to do good with videos for cancer patients. Boom! Sabrina immediately shared that her son, Jamie, is in the throes of treatment for Hodgkin lymphoma, a condition we cover on Patient Power. I told her I had interviewed numerous young people with the condition, and most are cured or doing very well, and that a new medicine, brentuximab vedotin (Adcetris), has been helping people who didn’t beat the cancer with initial therapy.  Sabrina, took heart from that. But then she went on, “Jamie has been a caregiver for ME. Now I am HIS caregiver.” Why? Because Sabrina has epilepsy and lately has been having a few seizures a month. She developed it after meningitis as a youth. And while a strong medicine, gabapentin (Neurontin), has worked well for the past few years, the seizures have been getting worse. That sparked my discussion of seeking out clinical trials, in Ireland or the UK.

Sabrina Mooney and Andrew

Sabrina Mooney and Andrew

Clearly, Sabrina was yet another example of someone affected by a serious condition (in her family case, two) and where she was actively looking for better care for herself and her son—the best doctors, the best medicines and access to both. Today patients around the world have a sense there may be better answers, but it takes them being proactive to uncover them. Sabrina and Jamie even went on Irish television to tell their stories, and my friend Michael had seen them and was touched then by what they said and, during lunch, touched even more in person.

Story #2 – Michael’s story is one of a caregiver, a father of four, with a wife of 18 years, Jan, who has been fighting an aggressive form of CLL. Rituxan didn’t work for her, but through Michael and Jan’s efforts, she was able to get into a trial across the water in Leeds, UK, with renowned CLL expert Dr. Peter Hillmen. Jan now takes ibrutinib (Imbruvica), and the large lymph nodes that plague her have shrunk dramatically. Michael explained the lengths they had to go to get in the trial and the difficulties they face in having their Irish health coverage pick up any of the cost. While patients will cross borders for better care and more hope, financial support often does not follow. In this case, it is a shame because Jan is one of those courageous patients willing to participate in a clinical trial not just to help herself, but to help all of us. While UK’s NHS pays for her medicine (and she’s the only Irish participant), the Irish system right now refuses to pay for the incidental costs of outpatient care. Michael channels his worries about Jan into being a strong advocate. He recognizes he can’t feel everything Jan feels as a patient, but he does all he can as a partner. It’s therapeutic for him.

Josephine Brady, Andrew and Jan Rynne

Josephine Brady, Andrew and Jan Rynne

Story #3 – Dinner with Jan Rynne and Josephine Brady and their husbands. As our full day in Dublin was ending, Michael arranged a dinner for Esther and me with Jan, who we had met before at a CLL event last year in Cambridge, and another couple where the wife was newly diagnosed. People meet in strange ways. Michael has a furniture manufacturing business and provides counters and tables to libraries around Ireland. Josephine is a librarian. In conversation at the library, Michael learned Josephine, with swollen lymph nodes and fatigue, had been diagnosed with CLL/SLL. He shared Jan’s story, and the women made a quick connection. At dinner, I was delighted to learn that both rely on Patient Power, our friend Dr. Brian Koffman and his CLL Society, and partners at CLL Forum and HealthUnlocked’s CLL community for almost daily information updates, guidance and support. In speaking with Josephine, I was bowled over by how much she knows. And it seems she has a crush on Dr. Jeff Sharman and is ever grateful for his blog. Josephine is quickly catching up with Jan, understanding the importance of being proactive, seeking second and even third opinions, and being open to participating in a clinical trial.

All their stories are different and yet the same: the special clinical situation can be different—and probably is, even if the illness has the same name. But in all cases, we have intelligent people knowing they must go the extra mile to get the care they need and deserve. They may have to say goodbye to even a local, generalist doctor they like personally, they may have to travel for better care, and they may have to fight with insurance or government to get some financial relief. And in all cases, they need to take a deep breath, acknowledge the seriousness and uncertainty of their condition, and push themselves to move forward with an appreciation of every day.

Jan and Josephine understood well they were not alone. They are now connecting with CLLers around the world for information and support. For Sabrina, this is new, but I think Michael and I opened a window for her and Jamie. We prescribed Matthew Zachary’s “Stupid Cancer” site for Jamie where young adults with cancer connect. And I told Sabrina I may know a source for clinical trials for epilepsy.

There are answers for us all and warm feelings of making connections. The lesson for me is always reach out, tell your story, and you will get so much back in return!

As always, I welcome your comments and YOUR stories.

Wishing you and your family the best of health!

Andrew

For the second year in a row, M and I were lucky enough to attend the Living Well with MPNs event held in Chicago. This event was hosted by Northwestern University, Robert H. Lurie Comprehensive Cancer Center, presented by Patient Power. Just like last year, the event started with registration, a little networking with other patients, then into the meeting at 10 am.

As the name of the event suggests, the focus is on encouraging us to live our lives as well as we are able. In order for anyone to do this, they need to be willing to seek out the things that will help them to live their best life. Most importantly, one needs to be informed and not afraid to ask questions.

I know it can be scary to ask questions at times. Appearing uninformed has always been a fear of mine. But that’s the beauty of this event. We are all in the same boat. We are all either patients or caregivers. We have all felt overwhelmed by the sheer number of questions that we had when we were diagnosed. The knowledge that we are in a room full of our peers makes it much easier to open up about the things that scare us or the things we don’t quite understand.

There were lots of very good questions asked, and our presenters gave concise, easy-to-understand answers. The doctors explained that cognitive symptoms are a lot more common in MPNs than previously thought. As more and more patients have been reporting mood disturbances, it has been more strongly connected to the MPNs themselves. Rather than sending patients from doctor to doctor (leaving us to feel rather like ping pong balls…) doctors are acknowledging that the mood disorders may be more directly connected to MPNs and are more openly collaborating for treatment with other physicians.

We also discussed the genetic factors of our diseases. There often seems to be a little confusion between something being genetic and something being hereditary. Our diseases are genetic, meaning they are caused a genetic mutation (JAK, CALR, etc.). That does not necessarily mean our diseases are hereditary, meaning passed from generation to generation.

The answer that seemed to stand out most to me had to be to this question: How should you decide on a course of treatment for an MPN? The consensus among the doctors presenting is that the history of the patient, and the way they are feeling, are more important when determining treatment plans than lab values alone. For instance, an ET patient with platelets in the upper 900Ks, but who has no history of blood clots, headaches or other thrombotic events, and feels well, does NOT necessarily need prescription treatment. While an ET patient with platelets in the 500-600K range, with history of blood clots, and constant disruptive symptoms, may require prescription intervention.

There are new advances, more research and better information available every day. This is why it is in our best interest to be as well informed as possible. Without knowledge, how can we expect to live well with MPNs? It is our responsibility to be proactive and assertive when it comes to our health. If you are not comfortable with the direction that your treatment is going, then speak up. If you do not feel that your doctor is receptive to your thoughts on treatment, then seek another doctor. We deserve to feel that we are heard, and that we are respected. The doctor/patient relationship needs to be a relationship of mutual respect—it needs to be a partnership.

I would like to take this opportunity to thank Patient Power again for presenting this event and for all of the information and videos available on their site. I also invite you to visit my blog, linampn.com for more thoughts and ramblings from a fellow patient.

As always, you are your own best advocate. If you do not stand up for yourself, who will?

Until next time,
Lina

On location at a medical meeting in Barcelona, Spain, Patient Power Founder Andrew Schorr shares his views on the importance of an ongoing conversation between patients, doctors and the pharmaceutical industry so that patients can be an active player in their care.

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I am gratified by the excellent feedback I received from the first edition of this blog. There are so many thoughts I want to follow up on with future discussions. Today, I’m going to continue with my own story as a further illustration of what we all have in common. The first order of business […]

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