Posts

Encouraging The Conversation

Interview with Nicole Lamanna, MD, Associate Clinical Professor of Medicine Columbia University Medical Center

Esther Schorr, care partner and patient advocate, interviews Dr. Lamanna about how patients can best interact with their health care professionals to get the best treatment they deserve. The pair then discuss what the best approach for patients who do not live near a CLL specialist, such as Dr. Lamanna. Check out the full video below to hear from a CLL specialist.

Encouraging The Conversation from Patient Empowerment Network on Vimeo.

Living Well With CLL

Interview with Patient Advocate, Jennifer Abraham

After her third cancer diagnosis of Chronic Lymphocytic Leukemia (CLL), Jennifer decided she and her family were going to make the most of everything. She says her life is better than it has ever been and has learn to just be and live. Jennifer considers her cancer diagnoses almost a blessing because it pushed her to do things she maybe wouldn’t have done. Check out the full video below to hear more from Jennifer.

 

Living Well WIth CLL from Patient Empowerment Network on Vimeo.

Tweetchats: What Are They? How Can I Participate?

A Tweetchat or a Twitter Chat is a live event where a group of Twitter users come together to discuss a predetermined topic. To sift through all of the world’s tweets a designated hashtag (#) is used for each tweet contributed to the conversation. Each chat has a set start time, time limit, and a host that moderates.

The moderator asks questions to prompt responses from the participants and helps get the conversation going/moving along. Cues are usually used such as T1, T2, and T3 for topics or Q1, Q2, and Q3 for questions 1 through 3 to provide context and clarity to both questions and responses. To participate in the chat, all you have to do is include the hashtag in your tweet. Websites such as tchat.io can help by filtering out all other tweets so you can focus on discussing one topic and it automatically adds the hashtag to your tweets.

Now that you understand the basics, you might wonder why you should participate. This type of platform allows you connect with a larger group of patients or experts who understand and know first hand what you are going through. In addition to the social connection benefits, tweetchats can be educational. You can learn about different treatment options, clinical trials, etc. You can find a list of all the different healthcare tweetchats here.

References:

http://www.forbes.com/sites/stevecooper/2013/09/30/the-ultimate-guide-to-hosting-a-tweet-chat/#28c902e364b3

https://blog.bufferapp.com/twitter-chat-101

#ASH15 Interview with CLL Expert Dr. Jeff Sharman

Interview With Dr. Jeff Sharman, MD, Medical Oncologist, Willamette Valley Cancer Institute and Research Center Medical Director, Hematology Research, The US Oncology Network

In an exclusive interview at the 2015 American Society of Hematology (ASH) meeting, Dr. Jeff Sharman discusses the latest news on CLL treatment options for patients. Ibrutinib, a BTK inhibitor is discussed as a possible frontline treatment – the Resonate Study is mentioned. In a randomized phase 3 study, they were surprised at how well patients did on Ibrtinib monotherapy, which should lead to FDA approval. Dr. Sharman also talks about ABT-199, a BCL-2 inhibitor currently in clinical trials and the challenges that face treatment with these powerful drugs. Combination therapy and monotherapy are discussed, as are side effects and costs of therapy to the patient.

Dr. Sharman is hopeful about CLL treatment and closes with the statement, “Our patients with CLL, with rare exceptions, are going to be living much more normal lives than their counterparts just several years ago.” As always, knowledge is power. Having an active dialogue with your medical team will give you confidence and hope for whatever your CLL situation is.

Jeff Sharman, MD, Medical Researcher at US Oncology Network, Discusses CLL News for Patients from Patient Empowerment Network on Vimeo.

[accordion]
[toggle title=”Full Transcript Here” state=”closed”]

Andrew Schorr:

Hello. Andrew Schorr on location at the ASH meeting, American Society of Hematology, in Orlando. I’m with Dr. Jeff Sharman, a noted CLL expert and with US Oncology Network and also based in Oregon. Thank you so much for being with us, Jeff. Let’s talk about CLL news, okay? So we’ve had really some novel agents, and one of them, ibrutinib, has been followed. It’s been a big deal for people, but we’re trying to decide and study whether it has application earlier, so there was some news about that, right?

Dr. Sharman:

Yes. So reporting today will be the randomized RESONATE 2 study, which compares the efficacy of ibrutinib versus chlorambucil. Now, chlorambucil is hopefully never going to be studied again as a control arm in a study. This should‑‑

Andrew Schorr:

It’s an old medicine.

Dr. Sharman:

It’s an old medicine, and I think that now with the results of this study and a prior study with the addition of obinutuzumab, or Gazyva, we’ve now shown two studies with not only superiority in terms of progression‑free survival but both of these now report overall survival benefits compared to chlorambucil monotherapy. So as of today chlorambucil, done, no more.

Andrew Schorr:

Dead.

Dr. Sharman:

Yeah. And it has been fading in North America for quite some time. But in terms of the results of this study, this was a randomized Phase 3 study, half patients of chlorambucil, half patients with ibrutinib, primarily in patients who would be considered appropriate for chlorambucil. Now, there was crossover allowed in this study, and this study started before ibrutinib was approved, and so I think that there were a number of patients who said, I’ll take chlorambucil, just so that they had a 50/50 chance knowing that if things didn’t go well they could then go on ibrutinib.

Ideally this is unique to those patients who are older with co‑morbidities or other medical issues that prevent them from getting aggressive chemoimmunotherapy type strategies, but regardless I think the most useful interpretation of this data isn’t so much the expected outcome that ibrutinib did better than chlorambucil but how well patients do on ibrutinib monotherapy.

This should lead to FDA approval of this drug in frontline. What we don’t know is how narrow or how broadly the FDA will construct that approval. That’s important because what the FDA writes in their guidelines and guidance is oftentimes what insurance will pay for, so‑‑and if they make it a challenge for insurance‑‑it really gets in all sorts of games, if you will. This study is in older patients who are considered inappropriate for chemotherapy, and that’s actually been a patient population for which idelalisib was approved with similar language.

So I think the devil will be in the details of the wording here, but it will introduce ibrutinib broadly or more broadly into the frontline treatment rather than restricted to those patients with 17p, as the label currently is formulated.

Andrew Schorr:

Okay. Now, other news here, a couple of others I wanted to talk about, one is about what had been ABT‑199 (?inaudible) letters of venetoclax, and its utility, and that seems to be coming along, and it seems to be a powerful drug.

Andrew Schorr:

Venetoclax is a very powerful drug in contrast to the B‑cell receptor signal inhibitors, so there‑‑the B‑cell receptor signaling pathway is a sequence of enzymes that help transmit biochemical signals within a CLL cell, and there are a sequence of these. And they include Btk, SIK, PI3 kinase and a variety of others, and there are probably two to five drugs for each of those targets.

But ibrutinib, idelalisib, duvelisib, entospletinib, you know, a variety of these targeted enzymes, those are B‑cell receptor signal inhibitors. In contrast, venetoclax is a Bcl‑2 inhibitor. Bcl‑2 is important for keeping one substructure within a cell arrive, what we call the mitochondria. Mitochondria is like the power generator of a cell, and what Bcl‑2 does is it keeps that power generator functioning. If you administer a Bcl‑2 inhibitor, that power generator goes into self‑destruct mode and takes the CLL cell out with it, and so we see instead of these kind of slow responses that transpire over many months and even years with the B‑cell receptor signal inhibitors, we see dramatic changes sometimes even after a single pill with the Bcl‑2 inhibitors.

Andrew Schorr:

Which is why for people in the trials they have to be monitored very carefully at the beginning.

Dr. Sharman:

Yeah. So, many of the studies that have looked at Bcl‑2 inhibitors have included mandatory hospitalizations for the administration of the drug. And so that’s how that going to translate into a drug that we would generally give as an outpatient I think remains to be seen and are some of the hurdles for that drug.

Andrew Schorr:

But a powerful drug.

Dr. Sharman:

Very powerful drug.

Andrew Schorr:

Okay. And so that gets us to clinical studies, and you discuss them all the time here. As you’re looking at combining drugs now, and that can be expensive. If these drugs get approved or are approved‑‑this is another insurance question maybe too‑‑but can that lower the likelihood that if you were taking let’s say ibrutinib by itself your cancer becomes resistant to it because you’re trying to hit the cancer cell multiple ways, down and out, right? And that maybe is the new horizon for CLL, right? Combinations?

Dr. Sharman:

Yeah. In oncology, the history of oncology has always been dominated by combination therapy. With rare exception the addition of other drugs leads to more cures than just one drug alone. Now, there are exceptions to that, but that is the nature of most‑‑the last 50, 60 years of oncology.

I think what patients want is the opportunity to have a very effective therapy that gets their disease into remission and not stay on therapy, and that’s where we wish to take the field. We’re not there yet. Currently, ibrutinib is once you start it you stay on it indefinitely, and there’s no end point.

Now, that’s okay in many regards because ibrutinib for most patients is a very well tolerated drug with acceptable side effects, but not for everybody. Joint pains, bruising bleeding, atrial fibrillation, there are a variety of reasons why some patients might be intolerant of ibrutinib. And in that regard if we can move the field towards shorter duration of therapy maybe that overcomes some of the cost limitations because if you start doing a Bcl‑2 inhibitor and a Btk inhibitor and maybe a CD20 antibody you could be talking very quickly about a half million dollars of therapy in aggregate cost, and that’s obviously unsustainable if that’s going to be done in perpetuity.

Andrew Schorr:

Okay. So we have economic questions. We have questions on how to outsmart the smart CLL cell. So just to wrap up, Jeff, you hear the news, you’re part of the news, and you’re seeing patients all the time. For people coming to you now and people out here and watching our video are you hopeful?

Dr. Sharman:

Oh, gosh, yeah. I mean, I think one of the sort of magical moments, if you will, of being a doctor is meeting that patient who’s been told they have some cancer and they don’t know much about it and walking them through those first hours of talking to an oncologist perhaps over several visits and watching this transformation from somebody who is very often understandably very alarmed to giving some hope for what’s out there that‑‑I think in a prior discussion we talked about average survival eight and a half years, you know, some of these statistics that are old, those statistics aren’t real anymore.

Our patients with CLL with rare exceptions are going to be living much more normal lives than their counterparts even just a few years ago.

Andrew Schorr:

Great. Wow. You know, that’s very exciting. I want to thank you for all you do.

Dr. Sharman:

Sure.

Andrew Schorr:

Thank you for the hopeful news, and just remind all of you that, you know, it’s said all the time, it almost sounds trite, but it’s so true. Knowledge is power. Be a full partner in your care, consult with someone, a team that’s really knowledgeable in CLL, have an active dialogue. It will give you confidence, it will give you hope, and now you’re hearing that there are more and more tools to help you whatever your CLL situation is. We’ll keep you informed on Patient Power. Thank you for joining us.

From Orlando Florida and the ASH meeting, I’m Andrew Schorr. Remember, knowledge can be the best medicine of all.

[/toggle]
[/accordion]

Clinical Trial Design: How Can Patients Help?

During the sixth session of the Patient Cafe™, participants were asked, “How could patients help in clinical trial design?” The discussion centered around making the clinical trial enrollment process and participation more transparent and easy-to-understand. Some takeaways from this great discussion:

  • The informed consent documents need to be shortened and clarified, with language that the average patient can understand.
  • Clinical trial sponsors need to be more understanding of patients’ schedules and commitments  when asking for tests and appointments. Patients should be made aware of what tests are required before the trial begins.
  • Logistics should be considered and discussed at the outset of the trial.
  • Tests and drugs should be paid for by clinical trial sponsors. When patients are told that a test is needed for the trial, but the cost is the patient’s responsibility, they feel that they are just being “used” for the trial.

How Could Patients Help Design Clinical Trials? from Patient Empowerment Network on Vimeo.

A Clinical Trial as a Positive Experience

During the fifth session of Patient Cafe™, Mike talks about his initial diagnosis and his feelings during that time. Mike had no symptoms of his disease and was on watch and wait. He felt fine but was concerned that his healthcare plan did not give him access to a CLL specialist. He switched plans in order to get a second opinion and ended up seeing Dr. Rosen from City of Hope who helped him enroll in a clinical trial.

Mike had a very positive experience during the clinical trial. He had almost no side effects and responded well to the treatment. When asked what he would tell other patients who were perhaps a bit afraid of enrolling in a trial, Mike answered that it is very easy to be afraid if you read about all the horrible side effects that are possible. But if you talk to the medical team and ask them what is most likely to happen, they will give you a pretty good idea.

Watch the video and listen to Mike relay his experience:

A Clinical Trial as a Positive Experience from Patient Empowerment Network on Vimeo.

Live CLL Patient Forum @SeattleCCA Draws a Full House!

On July 26th at the Fred Hutchinson Center, Patient Empowerment Network, Seattle Cancer Care Alliance and Patient Power are hosting a live patient forum for those patients, families and caregivers who are coping with living with Chronic Lymphocytic Leukemia.

Expert physicians talk, panels discuss and patients tell their stories. All learn from this unique experience.

Physician experts included:

David Maloney, MD, PhD, Member, Clinical Research Division; Professor of Medicine, Division of Oncology, Fred Hutchinson Cancer Research Center, University of Washington School of Medicine

John Pagel, MD, PhDAssociate Member; Associate Professor, Division of Oncology, Fred Hutchinson Cancer Research Center, University of Washington School of Medicine

Drs Maloney and Pagel talked about treatment options and new developments in the field of CLL. The current treatment options of chemotherapy, antibodies, BTK inhibitors and combination therapies were discussed and the treatments in development were then presented and carefully explained. Dr Maloney talked about his work on Chimeric Antigen Receptors (CARS) as well as other new research developments. Great care was taken by both physicians to point out that treatment is extremely individual and should be a decision reached after careful and thorough discussions with the patient and medical team.

Patient panelists were:

Charlie, Patient Advocate , Esther Schorr, Caregiver, Rich Siegel, Patient Advocate, and Lisa Weiss, Patient Advocate

Screen Shot 2014-07-27 at 7.11.07 AMThe panelists introduced themselves and gave a brief history of their experience living with CLL. Experiences ranged from Charlie who has been asymptomatic and has never received treatment for CLL to Lisa who has had numerous treatments and relapses during her journey with the disease.

The common thoughts and messages running throughout the presentations were those about support of family and friends and the importance of living well, living healthy and enjoying each day as it comes. The feeling in the room was a positive one. Be as educated about the disease as you can be, make sure that you have an excellent doctor and medical team that you can rely on, join support groups or start them, and be grateful for each moment.

In the afternoon, Drs Maloney and Pagel spoke of treatments, side effects and the importance of communication and mutual trust. Several points were discussed:

  • Trust your doctor – get a second opinion if you wish, but once you have found a doctor that you feel comfortable with, trust him or her.
  • Be informed and read up on your condition
  • Communicate with your doctor and medical team and ask questions
  • Be careful about taking vitamins, supplements or other products. Discuss all products with your doctor
  • What works for one person may not work for another. All treatment is individualistic
  • Use common sense and lead as healthy a lifestyle as you can.

The patient and caregiver panel had some words to share on living with CLL:

Standing Room Only!

Standing Room Only!

  • You are not alone! Ask for help and include family members in the discussion; you need their support.
  • Do not depend on your oncologist/hematologist to provide emotional support. Get professional counseling or group support. There are many organizations and online patient support groups that can be very helpful.
  • Live well and live healthy. Use common sense with diet and exercise. If you want to take any vitamins or supplements, discuss with your doctor first.

Caregivers and family members were a large part of this event. They talked about their hopes and fears, about involving their children in frank discussions about illness, death, what the future may bring and how to cope with a family member who has a serious illness. Spouses, siblings and children of patients spoke out. The energy, hope and commitment was felt by all. It was a powerful meeting indeed!

Bribing Anxiety

So, the last time that I had my regular appointment was a year ago. I was more than a year past treatment and my blood work came back good, my energy level was good and I had no issues to report. I was told that my complete remission was still in place and that the next appointment would be in six months. As it happens, the treatment that I received in clinical trial for my “moderately severe” matrix of genetic type of chronic lymphocytic leukemia (CLL), mutation status and symptom presentation worked out pretty much perfectly. Time to negotiate. “Let’s make it a year?” I implored. They set the appointment for six months but assured me that they would get together and consider the proposed new plan that I put on the table. A few weeks later I noticed, while checking my records on the online portal, that my next appointment had, indeed, been moved out to a year. And now I have that appointment coming up in a week or so.

I have embraced my remission and attacked life. I’ve been doing more over the past year and am just plain getting after it. I hardly ever say no to an opportunity, I smile a lot, I travel, I explore… And now I’m filled with anxiety. I want to take a nap. Does the fatigue mean that remission is over? I had a strange, very mild rash on my hands that really didn’t itch, but lasted a few weeks. Does that mean that there’s some bizarre infection in my body? My joints have been achy. I’ve had some pretty amazing headaches. Does that mean I have to start adding the term “relapsed” to my cancer vocabulary? Or am I just being a normal human being reacting to the unknown?

I know that I am reacting normally to the stress of cancer and that my responses are pretty much how all of us, at least quietly, deal with all the little things. We are told to take an inventory of everything and always report changes to our health care providers. We do this because some changes can be the early warning trip wire that our cancer has decided to change the rules. So we (and by we I mean I!) will always wonder if the next item up on the “how do you feel” menu is a harbinger of cancer or just the soreness that a 50+ year old guy feels after shooting the rapids in an inner tube for 5 hours. Anxiety and stress is something that gets added to the lives of every single person that is touched by cancer, patients and caregivers. We really cannot banish it from our lives, but we can rein it in.

A week of worry is not going to change the results of the upcoming hospital assessment. I’m either still in remission or not. So I will try to occupy my time and be productive. I’ll cook some fabulous meals for my family, give a presentation to a local civic group, mow the grass, write some articles, research a project… And try to minimize the amount of time I allow the anxiety to actually interfere with my life. I know that I cannot banish it, so I will try to paint it into a corner. Oh, and I’m bringing my doctor a bottle of wine. I’m told he likes wine and maybe a “bribe” will keep me on the one year check up cycle? Don’t give away my secret plan!

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 stopped smiling. You wouldn’t have known that AJ had suffered from CLL for many years. And that four months earlier, he’d been confined to a wheelchair, weak, with an ugly rash covering his body.

None of the treatments AJ had endured, much of it chemotherapy, worked for very long or very well. Until ibrutinib. The now FDA-approved treatment, trade name Imbruvica, is considered a breakthrough immunotherapy to treat CLL. It targets the malignant cancer B-cells but leaves the healthy T-cells of the immune system in tact. Best of all, it’s an oral medication. Three capsules a day. No chemo.

Days after AJ began to take ibrutinib in a clinical trial, he was out of that wheel chair. The rash disappeared. He quickly regained his strength. He traveled to Amsterdam and North Carolina for business. He expressed great joy in his longtime marriage to Jane, who had accompanied him to the town meeting, and unbridled pride in their three grown sons, one of whom is engaged to be married. Because of his seemingly miraculous response to ibrutinib, AJ and Jane were looking forward to the rest of their lives.

Something happened, however, after April 12. Apparently years of CLL and treatments had taken too harsh a toll. AJ developed Richter’s transformation, a CLL patient’s worst medical nightmare. AJ Halavacs died at Moffitt Cancer Center on June 3.

We CLLers think of these treatment advances as a bridge. Cross a bridge with a particular treatment to make it to the next bridge. Our goal is to cross enough bridges so that we can live with our CLL and die from something else. AJ reminds us that there is no cure yet for this disease. Patients remain hopeful, but after AJ’s death, this patient feels more vulnerable and less sure-footed about the path forward.

Nonetheless, I am glad that I met AJ Halavacs and learned about him. Mostly I am honored to have circled his spirited, positive orbit for a few hours. He’d be the first to tell CLLers not to waste a minute fretting, “live large” and say ‘yes’ to every opportunity for the time we’ve been given.

Events

Coming Soon

Please check back soon as we work to build more resources.