How Can Myeloma Patients Advocate For Themselves?

How can myeloma patients advocate for themselves? This Patient Café® was hosted by Jack Aiello, Patient Power host and advocate. He was joined by four different myeloma patients. Together, they share their stories, insights, and advice to become a self-advocates. Check out the full video below to hear from these patient experts.

How Can Myeloma Patients Advocate For Themselves? from Patient Empowerment Network on Vimeo.

Cancer Diagnosis – How and Who Do You Tell?

Interview with MPN patients and patient advocates, Lorraine and Karen

At the recent MPN Town Meeting, Andrew Schorr interviews patient advocate, Lorraine about how to explain and communicate with loved ones after a cancer diagnosis. He asks, What do you say? How do you handle it? Who do you tell? What do you tell your kids? Watch the full video below to hear Lorraine and Karen’s answers.

Cancer Diagnosis – How and Who Do You Tell? from Patient Empowerment Network on Vimeo.

Real Stories of Lung Cancer

Real patient experiences shared privately at Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a cancer diagnosis is important. Connecting you to those who can relate and provide support is what we do.

Caregiver 1: Female caring for Male with NSC Lung Cancer

My husband’s last scan was terrible. Everything that had once been invisible on previous scans had grown dramatically, and there are new nodes and tumors. He will get a port for Christmas, and start 2 new types of chemo by Jan. 1.

This is difficult to deal with for everyone. It was like we were able to live in a form of denial for quite some time. Not anymore….

He was diagnosed with stage IV non-small cell lung cancer a little over 2 years ago. He will start on a Carboplatin/Taxol combination. He will have a port installed just after Christmas, and begin the New Year with his 1st round of 6 cycles. So far, he hasn’t had radiation because it everywhere, so they have been trying to get it under control systemically.

I am so blessed to have a husband who, despite all he is going through, still tries to make life as easy for me as possible. I am so thankful for a wonderful family.

Patient 1: Female (USA) Lung Cancer

I have been thinking of making a journal about my health issues and here it is. This is great. I had cancer surgery almost 15 years ago and I have been cancer free and relatively healthy ever since. This last Oct. my illusion came to an abrupt halt. My lung specialist said I had a mass in my left lung and it needed to come out. Ah you said what??? He sent me to a Thoracic Surgeon and he was ready to sign me up for the next opening. I felt my stomach turn and I said I needed to see my Primary Care physician. I saw her a week later and told her I wanted to wait and see. She agreed and told me about a blood test that would screen for cancer. I had the test and it says I don’t have any Cancer in my system. I decided to get another opinion this time at UCSF. This is where I had my Lung Cancer surgery done in 1996. I am waiting for my appointment. It is in the middle of Jan. I don’t understand how well respected and learned doctors can do this. I have had two Dr. and a blood screening say they were wrong (and I’ll eat my hat if they’re right) but they insist the mass is cancer. I hope everyone gets second and third and fourth opinions. Well we shall wait and see. Thanks for the opportunity to say my peace.

My Cancer fears were gone once I had my surgery in 1996. I really never gave it another though. I did have yearly CT scans and they were consistently the same. I was well aware of the scar tissue present but I was a smoker. I was a hairdresser, used a lot of chemicals that are labeled dangerous. And I was a sun goddess and a swimmer and lifeguard. Again not very good conditions if you want to be cancer free. For any cancer!

I returned home from UCSF with the same old story. Let’s watch and wait. I will get another CT scan in 6 months and just go from there. Other than that I sure enjoyed being in San Francisco. I really love that town. I am feeling good and I will be doing life as usual for now. I started doing square dancing once a week and I will rejoin the gym. I hope everybody is feeling well and continues to have happy thoughts for their new year. 🙂

Well, I have missed the last two weeks of SD. I keep running a fever and feeling sort of sickish. I don’t want to be a rabbit out of the cage and push myself. I’m not in a race. I will rejoin the gym ASAP. I still haven’t heard from my doctor as to what she thinks is the next plan. I’m not too sure I will keep her as my primary Dr. She is way to controlling and this freaks me out. She works for me. I think more doctors need to remember they are working for their patients and any decisions need to be mutually agreed upon and that they are not the ultimate authority. I feel like she wants me to do everything her way and that I’m not her… Oh well, I did my will today and that went well.

Patient 2: Male (Malaysia)

Diagnosed with Stage 4 Non-Small Cell Lung Cancer, hv chemo treatment with Carboplatin + Taxol (6 cycles)2008 ; Tarceva (21/2 months)2008/2009 ; Cisplatin + Alimta (3 cycles) 2009; Alimta only (3 cycles) 2009 ; Alimta only (2 cycles) 2010.
Have experience Lung collapse and drain out fluid from lung in 2010.
Treatment not manage to reduce the quantity and size of tumor, but, manage to have it under control with no major changes for the total quantity and size since diagnose until now.

I proceed with chemo and this round I decide to use back the same drug that I use last year, Gemzar and Navelbine.

All went well after chemo I feel good and suddenly, situation changed and I started vomiting for 3 days, thereafter I felt very tired and I started to loss balance while walking. So, decided to proceed to hospital on. With blood test report, doctor ask me to admit hospital, as my Sodium is very low, it’s the cause of tired and dizzy, then my hemoglobin is low too, so, cannot proceed for chemo.

After all the paper work, I admitted and taking two bags of blood transfusion, then, follow by dripping of sodium water. On second and third day, they took my blood again, too bad, both show that no improvement on my sodium level, but, lucky that hemoglobin n RBW is getting so much better.

After 4 nights in hospital, I requested doctor to allow me discharge, no doubts I am not recover from short of sodium, but, I feel so much better. Finally doctor agreed and discharge me with sodium tablet.

Since back home, I feel good and I have regain my appetite, I really eat and enjoy.

Life goes on – I don’t think of I will ever rest from Chemo treatment for 5 1/2 months. Beside of the back pain disturb me, some breathless at times, basically, I have no complaints.

lung cancer ribbonI have delay my CT scan since April this year and finally got it done two days ago, and yesterday meet up with doctor to discuss about the result of scan. Overall, not much changes to my brain and bone, consider stable. But, compare with previous scan, tumor in lung show some 30% progression. Doctor advise me to proceed for Chemo by next week to get situation under control. Tentatively scheduled for early next week. Anyway, there are things for me to consider and I pray to Lord to guide me and show me the way for the treatment. My main concern is back pain that disturb me almost every night with the pain moving from one to another place at my back. Life now is with daily pain killer and because of the continue taking pain killer, I often feel tired / weak.

Spoke to doctor about getting opinion from Orthopedics to have some idea is the pain due to my spine, but, doctor told me that it is not necessary.

Well, I will arrange appointment with doctor in another hospital and have fix it on coming Monday, hopefully can have some solution. Life goes on, but, no more normal for the last couple of weeks and I hope that Lord will take away all the pain and restore my body with strength and energy.

No worry be Happy. Believe and have Faith.



Patient Advocacy – Views and Opinions at #ASH15

Twenty thousand people congregated in Orlando Dec 5th-8th for the annual American Society of Hematology meeting. A good number of them were patient advocates, from organizations all around the world. ASH did recognize these organizations and did give them a designated space on the exhibit floor, but did not give them free entry to the poster sessions, for instance, a practice that was criticized by some.

The Advocacy – Industry Relationship

The buzz at the meeting was that industry was becoming more and more amenable to partnering with these advocacy groups and to committing to try to understand the patient experience. The lunches and dinners and panel discussions that I attended were full of patient advocates who were conversing with the executives from pharmaceutical companies, answering their questions and themselves posing questions about the role of the patient in corporate decisions and strategy. At the Takeda Oncology Patient Advocate and Industry panel discussion, Fatima Scipione, Senior Director, Patient Advocacy for Takeda stated with conviction, “Patient impact is in everything we do.” Gail Sperling, Senior Manager, Information Resource Center at the Leukemia and Lymphoma Society, followed through with this concept by adding, “Pharma really values the patient voice because they realize how important it is.”

At the Genentech dinner talk, industry and executives discusses how collaboration between advocates and industry leaders benefits everyone. They talked about a patient-designed clinical trial that they had worked on and explained that how having patients participating from the outset really helped the overall trial outcomes.

Will this continue? Will it evolve? Hopefully it will and hopefully it will result in a clearer understanding by industry and providers of the patient’s crucial role in his own healthcare. There was a comment at the Takeda Patient Advocacy and Industry panel discussion that struck me –  “The relationship between patient advocacy and industry should be genuine and sustainable”. Let’s hope that this becomes the case.

How Can We Reach More Patients?

The patient advocates that attend ASH and other “Patients Included” medical meetings are extremely sophisticated in their knowledge of medical information and social media. They are confident individuals that are extremely web-savvy. They are members of various organizations and support groups for patients, and they have a “voice” online that is strong and respected. Other patients who are online listen to these POLs (Patient Opinion Leaders) and pay attention to what they say. And that is wonderful and so very helpful for them.

My question is this – How can patient advocacy organizations and POLs reach the patients that are NOT online? How can we go to patients that are not as tech-savvy or web-savvy and offer to help them find information about their illness, find help in support groups and get, perhaps, better care for themselves?

These patients would be the ones that are NOT being treated by a major cancer center. Nor would they belong to a patient community or support group. How can we reach them and introduce them to the strong online voices that we have in the patient advocacy community? Perhaps the older patients do not go online and are not savvy with social media or online patient support groups, but someone in their family surely is – their spouse, their children?

Should we reach out to families everywhere to ask them to advocate for their loved ones with cancer? Should we send out fliers to senior centers? Go through community organizations? All of the above? I don’t quite know the answer but I really would like to reach these patients.

The Bureaucracy of Clinical Trials

At a press interview with Dr. David Stewart, Head, Division of Medical Oncology, University of Ottawa, Dr Stewart laments the extreme inefficiency of the clinical trial process. Patients are dying while government is regulating. The clinical trial process is too long, too costly and too inefficient. Watch this video from The World Conference on Lung Cancer that recently took place in Denver, Colorado:

The Bureaucracy of Lung Cancer Clinical Trials from Patient Empowerment Network on Vimeo.

How Do Clinical Trials Work?

Patient Empowerment Network, in association with Patient Power, hosted a town meeting for advanced prostate cancer patients at MD Anderson Cancer Center. This event was attended by over 100 patients, caregivers and family members and live-streamed to an online audience.

During the Q&A period of this meeting, one participant asked the expert panel about clinical trials and how they work. The panel responded by discussing trial availability and eligibility criteria. The town meeting host, Jeff Folloder, a cancer patient, relayed to the panel his experience with clinical trial participation at MD Anderson.

Jeff explained that his medical team at MD Anderson really researched all clinical trials available and picked the best one for him according to his particular situation. Zita Dubauskas, the Physician Assistant on the panel, further explained that during a trial, the patient is very carefully monitored and scrutinized for side effects by numerous other medical personnel and really gets an extra level of medical care.

Watch the video and learn more!

How Do Clinical Trials Work? from Patient Empowerment Network on Vimeo.

A Patient Advocate Speaks Out About Clinical Trials

Obstacles and Progress in Clinical Trials

Laura Cleveland

Laura Cleveland is a 18 yr CLL patient, an impassioned patient advocate and a peer reviewer of late phase cancer clinical trials for the NCI Institutional Review Board (IRB), with focus on trial design, accrual issues, regulatory mandates and informed consent.

Cleveland has 12 years experience in designing, evaluating, and reviewing clinical trials, and I was interested to get her thoughts on the clinical trial process, obstacles that patients face and any recent progress being made in the clinical trial arena.

Obstacles to Clinical Trial Enrollment

It is no secret that clinical trials face accrual problems. Half of all phase III clinical trials close because of insufficient accrual with only 2% of cancer patients participating. In Cleveland’s opinion, some of the biggest obstacles are:

  • The myth that clinical trials are purely experimental and that the subjects are treated as “guinea pigs”. Cleveland explained that, in trials, patients are followed much more closely than they would be in normal treatment situations and that all standards of care actually evolved from clinical trials.
  • Logistics – Enrollment is often delayed due to eligibility criteria or rules and regulations concerning testing and screening.
  • Randomization and the fear of receiving “placebos” instead of cancer medication. Cleveland explained that placebos are rarely given in cancer clinical trials. When drugs are compared, the experimental drug is compared to the Standard of Care, She went on to say that there is even a push to remove randomization from certain trials and that there are currently single arm clinical trials available.
  • Cost – If insurance does not cover the costs of extra tests and doctor visits, it can be costly for the patient. There are organizations that help with these costs, but often the patient must bear the burden of significant cost outlay.

I asked Cleveland what the one thing is that industry/government can do to make the clinical trial process easier for patients. She had a very simple 3 word answer:

“Pay for it”

Progress Being Made in the Clinical Trial Process

When asked what progress had been made recently in the clinical trial process, including enrollment, navigation and process in general, Cleveland had several comments:

  • The patient materials are becoming more understandable and easier to read. The documents are being “translated” into plain language, the informed consent form is getting shorter and less complicated. Cleveland has been working with the National Clinical Trials Network on this for the past several years.
  • Patient-friendly clinical trial results are being published so that patients can read about these trials and understand them. Cleveland has been working with the Alliance for Cancer Clinical Trials on this.
  • Cooperative Groups have been working on ways to change the consent process and clinical trial protocols. These groups get together and discuss strategy to improve the whole clinical trial process to make accrual more attractive and patient-friendly. This is a slow process but encouraging steps are being taken. Cleveland said that patients are given a clinical trial “packet” that often, they do not understand. She further explained, “There needs to be a patient-friendly summary that the patient can read and easily understand before they even attempt to read the Informed Consent form. This summary needs to be in plain language and outline the clinical trial that they are considering.” Apparently, this type of summary exists for a few clinical trials, but it needs to be the rule rather than the exception.
  • Clinical Research and Clinical Trials need to be in the vernacular. They need to become everyday words and concepts. Social media is helping in this effort. Tweets and Facebook posts help with awareness. But there needs to be more effort in this direction. Possibly, clinical research staff could visit Middle School or High School and talk to the science or health classes about trials. Children can be great advocates of causes and could bring the word home to siblings and parents. Breast Cancer groups have done a great job for breast cancer awareness; they could really help by spreading the word about breast cancer clinical trials and clinical trials in general. Much, much more needs to be done in this area. Cleveland summarized,

 “As far as getting the word out about clinical trials, it’s just not there.”

In closing, Cleveland had several words to say to patients about self-advocacy.

“Get a second opinion! Seek out a specialist in the specific disease area that you have. Find out who is doing research in that area and contact them. Use all resources available to you. You must be your own self-advocate.”

Clinical Trial Process: A Physician’s View

Interview With Dr. Jeff Sharman

Dr. Jeff Sharman is Medical Director of Hematology Research at The US Oncology Network, one of the largest networks of integrated, community-based oncology practices in the US. US Oncology includes over 1000 physicians practicing at more than 350 sites in 19 states, and treats more than 750,000 patients annually. Dr. Sharman is also on the Patient Empowerment Network Advisory Board.

The US Oncology Research Network has enrolled over 60,000 patients in about 1,400 clinical trials so far. The website offers a trial finder that will connect you with a US Oncology practice near you that has clinical trials available.

Dr. Sharman is convinced that although research adds to a physician’s workload, it enlivens a practice and adds to productivity. In a video on the US Oncology website, Sharman says US Oncology found that physicians that recruit one patient per month on average are 70% more productive than their counterparts.

I asked Dr. Sharman several questions about the clinical trial process and he was kind enough to answer.

1. From the physician perspective, what are the 3 biggest obstacles in the clinical trial process?

“Regulatory oversight has become too burdensome.  In major academic centers and cooperative groups, it can literally take YEARS to open some studies – let alone accrue the study and determine the results.  Often the key scientific questions have changed before the study is executed and the results are no longer relevant by the time they are answered.  It is a case of “death by good intentions” to see such caution in clinical trials, but unfortunately, patients are dying while studies are acquiring the requisite signatures to get started.  In community practice, we are able to cut start up time to a small fraction of our academic counterparts, but the oncology practice environment these days makes it hard to fully engage in both clinical medicine and research.  Eligible patients are often not enrolled in clinical trials that are available at their own site because physicians are not able to slow down enough to connect the dots.”

2. What is the one thing that industry/government can do to make the clinical trial process easier? Why don’t they do it?

“Reduce the barriers to enrolling patients on clinical trials at the Medicare level and possibly even provide greater incentive to sites for quality research participation.  Medicare Advantage plans until recently had regulations that actually INCREASED the cost to patients to enroll on clinical trials.  Patients had higher copay (went from 10% to 20%) AND they lost maximum cap guarantee.  It was a powerful DISINCENTIVE to clinical trial participation.  That has been improved however Medicare is currently adopting numerous quality measures in reimbursement models to practicing physicians.  Research engagement could easily be included in these quality measures and would powerfully encourage participation.  Policies that are adopted by Medicare are often followed by major insurance carriers so there could be a spill over effect.”

3. Who are the major influencers in this arena? (This includes patients, advocates, industry, government and HCPs)

“Right now, virtually all power resides with the pharmaceutical companies.  They are the only entities with the budgets to sponsor clinical trials.  Government funding and grant agencies probably account for less than 10% of current clinical research in oncology.  Government could create tax incentives for pharmaceutical companies to provide research opportunities to investigators for more investigator initiated studies.”

4. What are the major positive changes that have been made to the clinical trial  process in the past 2 years?

“The agents used currently in clinical trials are based upon a far more detailed understanding of cancer biology than the cancer drugs of only 10 years ago.  With greater precision, drugs are often more effective with fewer side effects.  Furthermore, we are far more capable of understanding the unique biology of an individual’s cancer.  In the past, we might just call a disease by a specific name, but now we can often find the unique molecular heterogeneity within a single patients cancer.  This allows us to explore investigational therapies that may be unique to an individual patient.”

5. What is US Oncology Network doing in the way of clinical trial awareness for doctors and patients?

“Our network will enroll over 4000 patients to clinical trials this year alone.    US Oncology is a management organization for many practices and through thoughtful leadership enhanced the role of research within many practices.  US Oncology research has dramatically improved relationships with sponsors and sites to bring the best clinical trials to patients.  I could talk for hours on this.”

Thank you, Dr. Jeff Sharman and US Oncology!

Please discuss your treatment options with your medical team.

Digital Tools for Clinical Trials

There is progress being made in the clinical trials arena!

The Apple Research Kit was introduced several months ago and is making headway in the world of clinical trials, facilitating clinical trial enrollment, navigation and process for patients.

The Apple Research Kit is an open-source software framework for collecting clinical trial data. Researchers and developers of clinical trials are encouraged to use the kit to develop apps for patients who will use their iPhone to contribute data and participate in clinical research.

Patient Recruitment Made Easy

Several major institutions have developed apps using the kit for clinical studies on asthma, breast cancer, cardiovascular disease, diabetes and Parkinson’s disease. Other providers and developers are sure to jump on the band-wagon as recruiting patients by iPhone is much easier and user-friendly than posting fliers or sending out applications by mail. The major institutions that developed the first apps say that instead of the national year-long effort to recruit patients, they got thousands of volunteers within a day of launch.

Besides helping to recruit patients, ResearchKit could also help solve other problems in clinical research.

Objective Data Gathering

iPhone, with the user’s consent, can gather objective data with advanced sensors like an accelerometer, barometer and gyroscope. Apple is introducing other quantifiable metrics, like an app that requires patients in a Parkinson’s trial to regularly complete touchscreen exercises that would measure tremor incidence. And in the future, other sensors or apps will become available that could track all sorts of metrics useful for clinical research. And what a boon for patients! They can use metrics and the iPhone to track data automatically and easily, certainly reducing visits to a provider and helping patients in more remote areas by making participation in a trial much more accessible.

Frequent Data Gathering

Most iPhone users keep their iPhone close to them at all times, ensuring that data is gathered consistently, rather than at scheduled hospital visits. The data can be gathered instantly and sent automatically as long as the user consents.

Concerns About Privacy, Ethics, and Compliance

Some have questions about information privacy or the ethics involved in recruiting patients remotely. Can Apple and others keep the information gathered private?

And who is to say that all participants are over the age of consent when there is no one checking IDs at the door?

The ResearchKit is presently available only to those with an iPhone. These people tend to be more wealthy individuals – is this a problem? Are these the patients that clinical trial researchers want to recruit?

And currently, there is no easy way for participants to pose questions.

These concerns and others are certainly problems that Apple is aware of and is working on.

All in All, A Step Ahead for Clinical Research

With all the iPhones in use by countless patients all over the world, there is a trove of excellent data that certainly can be useful for clinical research. Apple and the clinical researchers and developers working with the ResearchKit are trying to help patients by gathering and analyzing this data. And with sensors and trackers available at their fingertips, patients can participate in research more easily than before.

Fabio Gratton, CEO of CureClick, a crowdsourced clinical trial recruitment platform, believes ResearchKit is a promising tool to help the cause of clinical trials:

“66% of trials today fail to meet recruiting goals, and 80% fail to finish on time due to both recruiting and operational challenges. That is why we created CureClick, which is the first clinical trial recruiting platform to use crowdsourcing through social media to identify patient volunteers. We believe that ResearchKit is another innovation that can help streamline the trial process, both in identifying patients and gathering data from participants in an efficient and real-time basis”.

“ResearchKit is a high-potential platform,” says Mikey Wills, CureClick’s lead designer, “But it still needs strong front-end development to make it a viable tool for clinical trial sponsors.”

Last month CureClick was tapped by Thread Research, another southern-California digital health firm that has been working closely with Apple to develop ResearchKit-powered apps, to assist in the development of the PRIDE Study app in partnership with UCSF, helping to create the largest database yet of the physical, mental and social issues that uniquely affect gay and transgender men and women. To date the app has helped recruit over 15,000 study participants.

The goal, through this partnership, is to address the general challenges the industry faces in getting patients to participate in the clinical trial process.

Consider Clinical Trials!

And perhaps #mHealth will lead the way to more awareness about clinical trials. More and more data is being collected via mobile phone. Many are used to using phones with fitness apps, nutrition apps, using their phones to track how they exercise and how they eat. If phones can help patients enroll, navigate and take part in clinical trials – so much the better! The more patients that consider clinical trials, the more research will progress and the more patient outcomes will improve.






CancerLinQ for Oncology Data

“Shoppers have Amazon,

Students have Google,

Oncologists will have CancerLinQ”


That quote appeared on a brochure I saw at ASCO and it peaked my interest in a special patient advocate session that was being held to introduce us to CancerLinQ, a health information technology platform. In January of 2015, ASCO and SAP, a software company teamed up to create a Big Data software platform.

ASCO’s Chief Medical Officer, Rich Schilsky began the session by sharing some important facts with the advocates.

Only 3% of adults participate in clinical trials.

Older adults (>65)  may not qualify to participate in clinical trials so their outcomes and adverse effects may not be known by others who also treat older adults.

As more drugs get approved through the quick FDA approval process there is a need to capture the knowledge that is being generated as patients use these drugs.

Currently cancer patient data is in “silos”( my word choice) at various cancer centers – NCI centers, academic centers, and community oncologist groups.

CancerLinQ will gather data from patients from around the country into a secure, searchable database.

CancerLinQ In A Nutshell :

Electronic Medical Records (EMR) of cancer patients will be collected, “de-identified” and entered into the database. Once the data is entered an number of things can take place:

-Providers can compare the care they provide to guidelines.

-Oncologists can search the database for patients with similar attributes, diagnosis, mutations, and treatments. The oncologists can then with their patients decide which treatment plan is best.

-Researchers can look for patterns in the patient data

In the fall of 2015, the first version of CancerLinQ will roll out and include 500,000 individual records from 15 oncology practices in the US.

For more information please visit

(Editor’s Note: This post originally was published in Women of Teal and was written by Dee Sparacio, an ovarian cancer patient and founder of the WomenOfTeal blogsite and co-moderator of the #gyncsm tweetchat on the second Wednesday of the month at 9pm ET.)

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 “excited,” it can be a rough go for patients.

As you may know, as doctors are testing out a new approach like immuno-oncology, they conduct clinical trials. Many trials are designed for the sickest people where their other options have run out. I have a dear friend in Seattle in exactly that situation. He has diffuse large B-cell lymphoma, and there is a trial of chimeric antigen receptor T-cell (CART) for his condition. He hopes to start participating soon. But like other patients who benefited in chronic lymphocyttic leukemia (CLL), at this point, he is very very sick and debilitated from months of chemo and a stem cell transplant that didn’t last. Our prayer is that he will enter the trial, and miraculously his T cells can be marshaled to finally fight his cancer.

 This is nothing like taking a pill to fight a sinus infection. These days the patients in these trials are at very low points. Of course, the researchers are hoping to prove safety and effectiveness and see immuno-oncology approaches used much earlier  in the course of a disease for greater benefit. That often happens with new cancer approaches. But today—as immuno-oncology is being studied for a broader range of conditions—many of the patients are very sick, like my friend, and it is their last hope. In my friend’s case, he is now facing additional chemo, so he can qualify for the trial. The journey has been incredibly tough, and we need to be reminded of that.

 I am a big proponent of clinical trials. I believe participating in one in 2000 for CLL saved my life. Fortunately, that one was for previously untreated patients, so I was feeling pretty strong at the outset. But many other trials are for people who have tried everything else. I pray this new approach to cancer treatment works for them, and they can make a solid turn toward strength and better health. I believe immuno-oncology will work out, as it has already for some people with melanoma and lung cancer. And when it does, we will have to thank some very sick patients who faced a bumpy road to make progress real for the rest of us.

I welcome your comments.

Wishing you and your family the best of health!


Multiple Myeloma Town Meeting at MD Anderson: Takeaways


I’ve just returned from MD Anderson in Houston where I facilitated a Multiple Myeloma (MM) forum put on by the Patient Empowerment Network (PEN). The program was titled “2014: Accelerating Progress in Myeloma and What it Means for You” and attended by 225 MM patients and caregivers plus another 40 folks watching live on-line.

Drs. Robert Orlowski (MD Anderson), Gareth Morgan & Faith Davies (both at the University of Arkansas) clearly explained what MM is (including MGUS and Smoldering) and its symptoms.  Did you know in just the last month, ultra high risk Smoldering MM, which is asymptomatic and treated as “watch & wait” has been reclassified as actual Multiple Myeloma where patients should consider treatment?  These doctors summarized current treatments as well as clinical trials for new drugs and protocols, focusing on new monoclonocal antibodies as well as future patient biology testing enabling more precise treatment recommendations for a given patient.

Later in the day, our panel of doctors was joined by a myeloma nurse practitioner, social worker, and 2 patients who all shared their thoughts on how patients can monitor and plan their treatments while living well with our cancer.  We all have varying degrees of MM symptoms and treatment side effects which need to be managed by our health team, perhaps the most important member being a patient’s caregiver.

In addition to breakout meetings where patients met each other and shared experiences while asking questions, many of which were addressed by the panel, the final hour of the forum was spent answering questions from both the live and on-line audience.  Sample questions included maintenance recommendations after transplants, length of bisphosphonate (aredia or zometa) usage, and the mental issues of testing every 2 months for smoldering without starting treatment. These are difficult questions without precise answers but our doctors and other panelist shared their experiences and advice.

I have no doubt (because many told me afterwards) that this program provided a wonderful education for both myeloma patients and their caregivers.  As a 20-year survivor of MM myself, I am proud to be associated with PEN and help make such a program possible.

(The following is from the editor)

This meeting was the first PEN meeting that was live streamed using technology. I registered for the streaming and watched the Houston meeting from my couch in Charlottesville, Virginia. The audio and video were very clear. The video was so clear that many of the photos below were the result of screen shots that I took while streaming. I loved watching this meeting online. The reason is, that I have been to these meetings and I have talked to the participants. The patients and their families so enjoy the meetings and so enjoy hearing the experts speak and listening to the patient stories and the patient questions. How wonderful that now we have a chance for more patients to benefit from these meetings. Many patients live too far to attend these meetings in person. Many are homebound or too sick to travel. Live streaming the meetings will give those patients a chance to watch the event.


Better Patient Access to HealthCare: Round Table Discussion Takeaway

I represented the Patient Empowerment Network at Patient Access Network (PAN)’s 10th birthday bash in Washington, DC On October 22nd. Not the cake and candles kind, but rather, a full day Roundtable to talk about…what else…health care. PAN’s goal to collect and collate information on how four key groups – (1) patients, (2) health care providers, (3) drug companies and (4) specialty pharmacies* might partner better with each other to improve medical care and make it more affordable.

As you might expect with more than 80 participants, there were no clear-cut solutions.

In the last 10 years, PAN has provided a financial safety net for 300-thousand patients grappling with life-threatening or chronic diseases. PAN has paid out nearly three-quarters of a billion dollars to help those patients pay medical bills. And while it will continue that part of the mission, it recognizes that the medical landscape is changing. Treatments are more targeted and expensive, more people are getting health insurance, either through Obamacare or Medicaid expansion. But experts acknowledge most recipients, including me, don’t read part or all of their policies.

My table, among a dozen at the forum, reflected a microcosm of the four key groups. It included representatives three non-profits, an Oncology specialty pharmacy, one drug company and of course, PEN. After considerable debate, we concluded that a change in the Standard of Care for patients is needed. What does that mean? That health care providers – doctors, nurses, social workers, psychologists need to do a better job to communicate with patients, both at the beginning of treatment and the end of life. Johns Hopkins in Baltimore for example asks every new cancer patient these four questions, the answers of which can drive the type and timing of a patient’s treatment:

  • What are you hoping for?
  • What’s important to you?
  • What do you worry about?
  • What brings you joy?

Conversely, patients need to take responsibility for their care and ask questions! What are the options for treatment? How long? What does it cost? Side Affects? Ask, ask, ask. Push, push, push for information. It’s a patient’s right, a right many patients don’t exercise. A right many patients, especially older ones, don’t care to exercise. A reminder of the old saw, “You can lead a horse to water, but you can’t make it drink.”

Another barrier to strengthening these partnerships: TMI – too much information – thanks in large part to social media. And, not all Patient Advocacy groups play nicely together in the sand box. Often there is duplication of services, competing interests and competition for dollars.

As for those start-of-treatment or end-of-life conversations, who’s going to pay for that? Insurance? The patient? The doctor? PAN? Which led me to conclude that a key ‘partner’ was missing from Tuesday’s Roundtable. The insurance industry.

PAN had made a conscious decision not to invite insurance companies, whose premiums are the subject of much debate and angst, not only among patients but also Congress. Roundtable speakers and participants agreed that today’s health care policies are driven by economics, not health needs. From my perspective, the conversation was incomplete without insurance reps. Many may view insurance as the enemy, but they are a KEY, maybe THE key player in this debate and need to be part of this discussion.

Financial toxicity became the catch phrase of the day.  Recently on “60 Minutes, MD Anderson Leukemia Chair Dr. Hagop Kantarjian said “high (drug) costs are harming patients.” However, a rep from Pharma, the high-powered drug company association asked, “What costs more?” The $100-thousand/year Hepatitis C drug, which can cure a patient, or monthly care in perpetuity without that medicine?

In other words, the value versus cost argument.

The Roundtable was a yeoman’s effort by PAN to collect in a diverse mix of advocates for patients, health care providers and the pharma industry to try to make things better. Under one roof. For an entire day. Each of the dozen tables offered ideas on barriers and potential solutions to health care’s thorniest issues. And while there are yet no definitive answers, PAN’s 10th birthday forum represented an admirable start to address improved patient access to and affordability of good health care.

(Carol Preston is a Washington DC-based communications consultant and eight-year CLL survivor)

*(Specialty pharmacies dispense high-end medicines for patients suffering life-threatening or chronic diseases like cancer, diabetes and Hepatitus C)

#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 cancer.”

About 18,500 individuals (over 15% from the United States) are attending the conference, an 11 % increase over 2012 attendance (the conference is held every other year).

So far, the conference is a huge success, with some breakthrough news as follows:

  • Real progress in targeted therapies for melanoma
  • New medicine to help advanced cancer patients gain weight
  • New medicine to fight chemo-induced nausea and vomiting
  • New data that shows women that are pregnant and have cancer should not be afraid of chemo hurting their fetus

The twitter stream has been quite active – in multiple languages! The hashtag is #ESMO14

There is one “kerfuffle” however. Apparently, Spanish “authorities” ban journalists, patients, patient advocates and nurses from visiting pharma and non-profit organization booths. The reason is not quite clear and those who are tweeting have been asking questions. Read an article about the “ESMO exhibit floor kerfuffle” here.

The overall feeling at the conference though, is one of excitement. There is a lot going on in the way of new research and treatment. And the takeaway is that there is real progress ahead.


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