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I Am Off To See The Wizard the Wonderful Wizard Of ONC!

3/13/2017

Dr. Bart Barlogie - The Wizard Of ONC

I am now an 11 year survivor, and like many patients, I have a local oncologist at Mayo Clinic and go to see my primary Myeloma Specialist (Dr. Bart Barlogie) at Mt Sinai in New York city. It is something I would recommend to all patients who do not have a myeloma specialist close to them. I live in Florida and travel to New York, and my insurance has been accepted in both Mayo and Mt. Sinai. A friend, Danny Parker, also lives in Florida and will visit his specialist in San Francisco, California.

Mayo Clinic did a retrospective study showing that experienced myeloma specialists will significantly improve life expectancy, and NPR recently conducted a study and found that cancer patients were 20 to 50% less likely to die if treated at a comprehensive cancer center rather than at a local oncologist. This same study also showed that 85% of patients who could choose to travel to a comprehensive center chose NOT TO! If you have read this and choose not to get a treatment plan from a myeloma specialist without a great reason, then, like Forest Gump said, "Stupid Is As Stupid Does!"

Over the years my time between visits to Dr. Barlogie went from 3 months to 6 months and now every year. I go every few months to Mayo locally for blood work. With Dr. Barlogie I get a bone marrow biopsy, MRI, PET scan, bone density, blood, urine and MRD tests. But if you are anything like me, I look to these visits with dread. Cancer has an ugly way of creating angst, worry, and concern around these major events. My wife has noticed that I go though a metamorphosis. My once happy go lucky attitude disappears, and a lot of crap goes through my head. Is the pain in my legs really new bone disease? Is my fatigue a result of myeloma induced anemia? I do like Dr. Barlogie, but I always dread this time of year. I think every cancer patient has varying degrees of anxiety, and I choose to try to manage mine with Zoloft. Everyone handles this in different ways, and some may not be affected at all. To those few, I envy you!

Good luck and may God Bless your myeloma Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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Who Knew Feb 28th Was RARE DISEASE DAY? I Didn't! We Must COME TOGETHER!

3/6/2017

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I was contacted by Anna Suarez who wanted to start a partnership to help to obtain visibility for rare diseases like myeloma and mesothelioma. It is often said there is strength in numbers, and unfortunately rare and orphan diseases do not by themselves have the numbers, but together we do. Below is a case for a unified approach for rare diseases, and the hope that immunotherapy will play a curative role for rare diseases. Few drugs have been developed for rare diseases because the limited numbers provide no profit potential for drug companies to spend the billions for development, but together we do have the numbers to drive change. On a micro scale myeloma has accomplished this with the focused, unified, and consolidated approach of the IMF, MMRF, LLS, Myeloma Crowd, researchers, specialists, pharma, and patient advocates. This resulted in 5 new drugs for Myeloma a rare and orphan disease. Just think what we could do with 30 million members vs 30,000.

Each year, Rare Disease Day arrives on the last day of February. In the United States, a disease is considered rare if it affects less than 200,000 people. Even though individually these diseases are diagnosed in small number of people, when considered as a whole, the rare disease community includes 30 million Americans. The National Organization for Rare Disorders (NORD) has announced that the theme for this year is research.

Research and Rare Disease

As it currently stands, there are very few FDA approved treatments for rare diseases. In fact of the 7,000 diseases that are considered rare, 95% don’t have approved treatment options. The 5% of diseases that are lucky enough to have approved treatments still face the battle of accessibility because these treatments can be extremely expensive. But before patients can even confront this challenge, they first have to be diagnosed, which remarkably is a major challenge in itself. Many people who are faced with rare diseases not diagnosed properly or even at all.
The Cancer Breakthroughs 2020 seeks to alleviate some of the burden of limited treatment options. The initiative is tasked with effectively ending cancer through intensive study of immunotherapy with an objective to develop a cancer vaccine by the year 2020. Joe Biden announced the project as the “Cancer Moonshot” in 2016 during his time as Vice President, since curing cancer is a goal on par with putting a man on the moon. The initiative is highly collaborative and brings together the people from the “pharma, community and academic oncology, government, and scientific communities.”

The research focus of the program is Immunotherapy, which uses the body’s natural defenses, the immune system, as a basis for fighting cancer. There are a few different methods with this type of treatment: either encouraging the immune system to work harder to destroy the cancerous cells, or introducing additional biological features, like man-made proteins, to improve how the immune system functions. This is referred to as active and passive immunotherapy respectively.

This treatment is already promising for some rare diseases. A drug called Keytruda is currently being reviewed as an immunotherapy measure for several cancers, including multiple myeloma and mesothelioma. Although currently in the clinical trial stage of development, there have been some successful trials for both of these cancers that have scientists excited. Keytruda has already been approved for other cancers, specifically non-small cell lung cancer and head and neck squamous cell carcinoma. Hopefully Keytruda and other immunotherapy drugs will continue to show positive results and eventually become approved treatments. Having widely accessible and viable treatment options would be revolutionary for the rare disease community.

Impact on Patients

What does this mean on a personal level? Participating in clinical trials is one way that new research can directly affect patients. It may mean receiving a life-changing treatment, or at the very least contributing to our overall understanding of immunotherapy. This can be a huge source of pride for patients, and allow them to be part of the larger conversation on immunotherapy.

At an even higher level, this research and the awareness brought about by Rare Disease Day gives patients a reason to hope. It’s incredibly easy to despair when you are faced with a discouraging prognosis, limited treatment options, and very few answers overall. Patients affected by rare diseases are often segregated by their specific disease, which means they often don’t have the same support resources and communities that are available to more widespread conditions. However, on the few occasions when the rare disease community can come together as a whole, patients are reminded that there is a large group of people that are experiencing some of the same struggles. Even though their symptoms may be different, they can relate to each other over the common challenges that are present across the rare disease community.

And of course there’s the added knowledge that even people not directly affected by rare diseases are paying attention on these awareness holidays. Having the nation’s attention shows patients that they have not been forgotten by their fellow citizens. And this can transition into tangible benefits as widespread awareness results in better funding and subsequently better treatments. Nurturing hope for patients that need it is the core of what Rare Disease Day is all about.

There are lots of reasons to have hope on this year’s Rare Disease Day - share yours in the comments below!

Good luck and may God Bless your RARE DISEASE Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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I Am Off To See The Wizard the Wonderful Wizard Of ONC!

Who Knew Feb 28th Was RARE DISEASE DAY? I Didn't! We Must COME TOGETHER!

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