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.Treatment-Diaries-logo-300x88

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.2nd opinion

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

ASH 2015 Convention Hall

ASH 2015 Convention Hall

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

Genentech slide

Slide at the Genentech dinner talk

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?

With Advocates Andrew Schorr and Cindy Chmielewski

With Advocates Andrew Schorr and Cindy Chmielewski

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. If you have an idea, please comment below. I would love to hear your thoughts on this!

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. Videos are now up on our website for viewing.

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.

Digital Tools for Clinical Trials tweet

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

Objective Data Gathering

Apple Research Kit

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.)

Update on Melanoma Town Meeting for Patients Live Streamed!

Screen Shot 2015-03-28 at 3.28.59 PMScreen Shot 2015-03-28 at 4.50.45 PM

Update on Melanoma: Today’s Research, Tomorrow’s Medicine was the title of the Patient Empowerment Network town meeting for melanoma patients, families and caregivers.

This meeting took place in Phoenix, AZ on Saturday, March 28th. It was live streamed (which is what I did, from my home in Charlottesville, Virginia!) and Carol Preston was a great designated host for the online audience.

The Expert Panel

The Expert Panel

The panel of experts (Dr Wong from USC Norris Comprehensive Cancer Center, Dr Patel from MD Anderson, and Dr Gimbel from Banner/MD Anderson) first discussed the disease of melanoma, its biology and the various treatments possible, including chemotherapy, biochemotherapy, targeted therapies and immuno-therapies.

All doctors agreed that there has been a vast amount of progress in melanoma. What was true yesterday is not true today. Melanoma demands a team approach of possible surgery, radiation, and the various medical therapies. And of course, all patients are different and react differently. Patients have to find the right doctor and the right treatment.Screen Shot 2015-03-28 at 1.24.43 PM

And a call to action from all doctors: melanoma is increasing. In the US, one person every hour dies from melanoma. And this number is increasing. Tell your friends and your peers. Protect your children. And everyone should have their skin checked yearly by a dermatologist.

The panel discussed clinical trials at length. All agreed that trials were a great way for patients to get the latest treatment, but they were different to find and to navigate. “There is work to be done here,” Dr Patel said. Patients should use their doctor, their provider, Patient Advocacy Groups and online sites to find clinical trials that could benefit them.

TJ Sharp and Martha Bishop, both melanoma survivors, joined the panel and spoke about their experience with clinical trials. After several attempts, they both found a clinical trial that was working for them. They are both doing well. They both spoke about their journey, how they had to really research to find the best doctor and the best treatment for them. They emphasized that patients need to be persistent and keep asking questions and finding answers. They have to look for information, understand their disease and make a conscious effort to educate and empower themselves.

Screen Shot 2015-03-28 at 2.52.53 PM

Carol Preston interviews Dr Wong

During the breakout sessions, Carol Preston interviewed both patient panelists and doctor panelists, often soliciting questions from the online audience.

In the afternoon, Rena Szabo, a psychologist at Banner/MD Anderson joined the panel and lifestyle issues were discussed. The importance of leading a balanced lifestyle and having a good support system were emphasized. TJ and Martha agreed that family, faith and hope played a large part in their cancer journey. Living each day at a time was how they got through the early days of the cancer diagnosis. Rena talked about the mind/body connection and how important it was to have a good mental attitude and good social and emotional health while dealing with cancer.

The meeting ended with a Q&A session with questions from the live audience and also from the online viewers.

Click here to see the slides from this event presentation.

Be sure and check back with us on the Update on Melanoma page to view videos from this meeting. Videos will be posted as they are edited.


Immuno-Oncology – The Challenging Road Ahead

Cancer Patients at a Town Meeting

Cancer Patients at a Town Meeting

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!