Even if you do find a match, you will likely be faced with taking immunosuppressant drugs for the rest of your life to combat organ rejection, which in turn increases your susceptibility to a variety of complications, including infection, cancer, diabetes, and cardiovascular disease. And even then, your body may still reject your new organ.

But in what is hailed as a potential game changer in transplantation science, a small preliminary study suggests that both issues can potentially be addressed by transplanting stem cells from the organ donor to the recipient.

The study, recently published in journal Science Translational Medicine, tested the ability of donor stem cells to trick the recipient’s immune system into treating their new kidney, received from the same donor, as their own, ultimately saving both the organ from rejection and the patient from having to take immunosuppressants.

All of the 8 patients in the study received kidneys that were “less than perfect” matches; that is not necessarily unusual, but they faced a major uphill battle in preventing rejection. But what is unusual is that 2 days after the kidney transplant, they also received an infusion of immune cells bioengineered from the donor. And amazingly, 5 of those patients were able to discontinue their use of immunosuppressants completely after a year.

Furthermore, they show no signs of organ rejection during follow-ups 6 to 20 months after stopping those drugs.

While experts find this a very enticing development, it is not yet clear if these patients’ acceptance of their new organs will translate into a lack of early warning capabilities to detect other foreign bodies, like infections or malignancies. Furthermore, it is also a very small pilot study, and much follow-up study is needed. But 2 pioneering transplant surgeons at Massachusetts General Hospital say it “may potentially have an enormous, paradigm-shifting impact on solid-organ transplantation.” That’s great news.

Guest editor:  Dave Schlosser, Patient Navigator LLC

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CITN is a network of pioneering researchers in cancer immunotherapy from 27 top U.S. cancer centers and universities. Together, they work to identify the chemotherapeutic potential of agents with known and proven biologic function, and subsequently design and run early phase clinical trials to evaluate their ability to provoke an immune response in a way that can treat cancer. And they do this while combining academic peer-reviewed hypothesis-driven studies with the rigor and efficiency of industry trials.

The first trials will evaluate CP-870,893, a Pfizer-developed monoclonal antibody, as a presurgical treatment in patients with operable pancreatic cancer, and IL-15 (interleukin-15). IL-15 is being tested in human cancer patients for the first time this year as well in a study just launched that tests it as a treatment for melanoma and kidney cancer.

Immunotherapy has long been an area where researchers hoped to make progress.  This effort may open the door to new treatment options for these very difficult cancers.

Guest Editor:  Dave Schlosser, Patient Navigator LLC

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Each year, the American Society of Clinical Oncology conducts an independent review of advances in cancer research that have the greatest potential impact on patients’ lives. This year, Clinical Cancer Advances 2011 features 54 significant studies, including 12 that the report’s editors consider major advances.

This year’s Clinical Cancer Advances report also recaps the year’s most important cancer policy developments and ASCO policy initiatives that are likely to influence cancer care over the coming years. These include developments that could help to accelerate the pace of clinical cancer research progress and ensure access to quality cancer care for patients.

Anyone who is impacted by or interested in cancer research, treatments and care should look at this report.

This article and more can be read on the Patient Navigator December 2011 newsletter.

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One important new area of research is called autophagy.  Haven’t heard of it?  You will.  Here is a simplified explanation.  When cancer cells are mired deep in the core of a tumor, they have limited access to oxygen, growth factors and nutrients from the blood vessels that feed the tumor.  So when things get tough for cancer cells, they start eating themselves to get what they need to survive.  This is autophagy.

Normal cells rely on autophagy to maintain a balance or during times of stress. Cancer cells do too, not just to survive in the inhospitable environment of a tumor, but also to ward off the effects of chemotherapy and radiation.

When autophagy is activated, (when the “self-cannibalism” begins) it is “an intrinsic cell-survival mechanism that cancer cells turn on to recoup essential building blocks when they’re being poisoned or irradiated,” according to Dr. John Cleveland of The Scripps Research Institute.

Therefore, a greater understanding autophagy’s role in cancer has led researchers to investigate whether blocking autophagy can make cancer treatments more effective, cutting off what amounts to an important escape route.

The research is in early stages and there may be substantial differences in the autophagy activity in different cancer types, or even from tumor to tumor.  Still, according to Dr. Ravi Amaravadi from the University of Pennsylvania Abramson Cancer Center, the available evidence suggests that autophagy “seems to be a process that could be important in many cancers.”

A number of clinical trials testing autophagy inhibition are actively recruiting patients with a variety of cancers, including breast, colorectal, myeloma, and chronic lymphocytic leukemia.  They are testing an off-patent drug called hydroxychloroquine, or HCQ.  The largest trial to date involving HCQ is for patients with newly diagnosed glioblastoma multiforme, a brain cancer. There is also a Phase I/II trial testing authophagy inhibition in patients with stage II or III pancreatic cancer.

The September 7, 2010 issue of the National Cancer Institute Bulletin contains the complete article from which this summary is drawn.  To dig deeper, consult the American Society of Clinical Oncology’s work in this area.

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• the launch of the new Patient Navigator website with additional products, services and discounts for our clients

• the National Cancer Institute’s reorganization of the system of clinical trial cooperative groups and how that should improve the efficiency of clinical trials in the age of molecular oncology

• introduction in our Food Science series of the acid-alkaline balance in our food as another way to plan a healthy diet

We welcome your comments and suggestions for future articles!

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Check out my @constantcontact newsletter.

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However, sometimes people are discouraged from asking questions or doing research that would make them more comfortable with the proposed treatment plan, or even expose them to options that have not been considered.  Sadly, some care providers perceive that they are being “challenged” when a patient asks questions; others simply don’t take or make the time for a patient’s questions.

This type of situation is terribly unfortunate. It is only by communicating openly and fully with your care providers that you can make the decisions that best meet YOUR needs. Every person has the right to fully participate in all decisions regarding his or her own health care.

This legal doctrine is called the right to informed consent. The World Health Organization, the European Parliament, the American Hospital Association and many other organizations support and endorse the right of all people to make their own healthcare decisions in consultation with their caregivers.

The website  http://www.informedmedicaldecisions.org is dedicated to supporting and educating people on their rights to actively participate in medical decision making.

As a patient or caregiver, you have the right and responsibility to obtain as much information as you need to be able to commit to a course of treatment or test process. Some questions/statements that can help get the information you need include:

• Can you explain this to me?

• Where can I get more information?

• Can you write this down? Draw me a picture?

• How is this helpful to me?

• Are there any risks involved?

• Can you recommend a safe alternative?

• What are the probable side effects? What percentage of people experience these side effects?

• Does my insurance cover this treatment?

• What is the time frame for this decision – immediately, days, weeks, months?

• If I choose not to go ahead with this recommendation, what would the consequences be?

• How much time would I have to get a second opinion?

• I want to think about this before I make a decision.

• I don’t feel comfortable with this recommendation.

• Is there any else I can do or try?

By becoming actively involved in your care, you are likely to be more satisfied with your decisions.  Both patients and doctors benefit when patients are well-informed and play a significant role in deciding how they are going to treat or manage their health conditions.

Informed patients feel better about the decision process. Their decisions are more likely to match up with their preferences, values, and concerns. These patients are more likely to stick with the regimens the treatment requires, and they often end up rating their health after treatment as better.

Submitted by Debora Harvey, Patient Navigator

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One of my worst nightmares is one of my children being diagnosed with a condition that requires a bone marrow transplant.  My kids are biracial, which means that the chance of finding a match in the existing pool of registered bone marrow donors is miniscule.

According to an article in The Washington Post on Tuesday, June 1, only about 3 percent of donors listed in the National Marrow Donor Program’s “Be the Match” registry are of mixed race. Washington Post Article

People who are multiracial are one of the fastest growing demographic groups in the United States.  However, despite donor drives and new efforts to utilize social networking to increase the number of donors, they are also the most under-represented in the marrow registry.

As the number of conditions that are potentially treatable with bone marrow transplants grows, so does the demand for donors.  The first line is a family member but often, no family member is a match.  Next, doctors turn to the national registry and even international registries to find matches for critically ill patients.  For single race patients, the chances are slim.  For those of mixed race, those chances are virtually non-existent.

I have been registered with the National Marrow Donor Program since 1991.  I have been called twice with the news that I was a potential match for a critically ill individual.  Both times I unquestioningly proceeded with the next level of screening necessary to determine a true match.  Sadly, both times, the potential recipient died before it was possible to schedule a donation.  In some ways I felt the loss of their lives deeply.  Lives that were lost that maybe, just maybe, a few ounces of my marrow cells could have had a role in saving.

For more information on registering to be a donor, click on  http:/www.marrow.org

Guest editor Debora Harvey, Patient Navigator

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Unfortunately, the reality is a double-edged sword. Yes, the Internet lets people become well informed, but it has can also foster “cyberchondria” and “analysis paralysis.”

I now see my Great Aunt Frieda in a whole new light.  I’m glad that she lived before the Information Revolution.  You see, Auntie F, as we called her, was a hypochondriac.  She constantly visited her doctor for a multitude of problems.  It was easy then because doctors could spend more time with patients and it cost less.  So her doctor would listen to her, reassure her that she was not dying of the symptom of the week, and see her again in a week or two to hear about her newest issue.   She lived, in nearly perfect health, until a peaceful death at age 95.

The 21^st century gives us a new twist to this story.  “Cyberchondriacs” spend hours at the computer screen, typing in symptoms or fears, wading through the results, both accurate and inaccurate, and convincing themselves they have a certain condition.  Often, they will print out reams of documentation and present themselves to their doctors, having already diagnosed their “condition” and determined a course of treatment.  To make matters worse, bogus information may appear as genuine evidence-based medicine and is often flanked by marketing ploys offering miraculous treatments

In a May 2002 research report, the Pew Internet & American Life Project (www.pewinternet.org) called them “health-seekers.”  “About 6 million Americans go online for medical advice on a typical day,” said Pew in its Vital Decisions report. “That means more people go online for medical advice on any given day than actually visit health professionals (on a given day),” Pew said, comparing the 6 million estimate figures to an unspecified, but lower number provided by the American Medical Association.

What is the cost of cyberchondria?  It is estimated in the millions of dollars and rising every year due to unnecessary visits to the doctor’s office or emergency room, un-needed and possibly invasive tests.

Online medical information is wonderfully helpful and useful in many situations.  But, like anything else, moderation is the key.  Choosing sources wisely, using good sense to edit the results, and getting OFF of the computer when it all becomes too much are important keys to successful use of online health information.  To learn more about evaluating health information on the Internet, visit http://tinyurl.com/Evaluate-Info-On-Internet

Submitted by Guest Editor Debora Harvey, Patient Navigator LLC

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Through the TCGA, researchers have now developed a more reliable scientific method to identify these genes.   As this research is shared around the globe, more accessible and effective cancer treatment options are being discovered.  The ultimate goal of the TCGA is to create a catalogue of these “defective” genes, thereby offering increased detection, and ultimately, better prevention and treatment of cancer.     

As healthy cells grow and divide, they not only produce more healthy cells but also kill off cells that are no longer needed.  A cancer cell is produced when an otherwise healthy cell grows abnormally or does not die off when it should.  These cancerous cells then form a mass or tumor.

Through the TCGA, researchers are trying to pinpoint why these specific genes change and how that can lead a cell to become cancerous.  Once this information is gathered, cancer treatment will move to a more targeted form of treatment.  Doctors will target only the abnormal gene, as opposed to today’s standard treatment of chemotherapy, which affects the whole body.  Such a change in treatment will be beneficial because standard chemotherapy kills off cancerous cells but also some healthy cells in the process.  If researchers can instead identify the “defective” genes and target them directly, healthy cells will stay intact and be less affected by the cancer treatment.

For example, the National Institutes of Health recently announced that TCGA identified distinct subtypes of glioblastoma multiforme, the most common form of malignant brain cancer in adults.  In the past, doctors treated this type of brain tumor as a single disease, whereas now they know that glioblastoma multiforme is, in fact, four distinct molecular subtypes.

In addition, through the TCGA, researchers have also discovered that response to chemotherapy and radiation differed by gene subtype.  Although the current standard of treatment will not change overnight, these new discoveries will help doctors to tailor a cancer treatment plan using genetic information.  

Originally a pilot project, TCGA has turned out to be quite a success in demonstrating the value of cancer research.  In the fall of 2009, President Obama announced that the National Institutes of Health will spend $275 million to expand TCGA to other types of cancer, thus opening the door for more specific treatment options and hopefully more cures.

To learn more about the cancer cells we have in our body, please read our January 27 blog post at: http://patientnavigator.com/blog/2010/01/27/we-all-carry-cancer-cells/

For further information on The Cancer Genome Atlas Project, please visit:

http://cancergenome.nih.gov

http://www.nih.gov/news/health/jan2010/nci-19.htm

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