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Be Your Own Advocate - Clinical Trials and Emerging Therapies

If you’re in the Boston area, come hear me speak on November 13thCheck this

When given the opportunity to speak to patients and caregivers, one of my favorite topics is the patient’s responsibility to be empowered and proactive about his or her care.   Yes, responsibility -that means getting access to sufficient information such as your medical records and reports so that you can make better decisions.    The emerging ePatient movement, driven by a group of like-minded patients, caregivers and medical professionals is having an incredibly positive effect on the healthcare industry.  The old order in which physicians assumed a patriarchal role is gradually collapsing.  The sooner the better.   I believe being an empowered and educated patients is not only your responsibility, it’s your obligation.  

As you don’t have to be an auto mechanic to know how to drive and care for your automobile, you don’t have to be a physician to care for yourself.  However, the more information you know about your car, the better you can care for it.  Get it?   Some drivers are really not in tune with what’s happening while driving.   They don’t hear that clicking sound, (possible un-insulated spark under the hood) they don’t hear a leaking vacuum line, (possible break failure) they don’t hear that low frequency rumble caused by an under-inflated tire (your tire will soon be flat, possible loss of ability to steer).   So, it’s the symptoms that might be early indicators, not necessarily the actual failure. 

Similarly, some people are not in tune with their bodies.   Some can’t tell if their resting heart rate is fast, some can’t feel higher blood pressure, some are not aware they are dehydrated, (the car’s radiator fluid level is low).   Some Mom’s can tell when their kids have strep throat, there’s a smell.   This point is important, are you in tune with your body’s signals?  Have you asked your physician for what symptoms you should look? 

Unlike more popular tumor type cancers that cause pain, exhibit lumps and bumps or interfere with certain of your body’s organs, blood cancer may not exhibit those kinds of symptoms.  You’re more likely to feel fatigue.  You know, you’re bone tired and can’t lift your head off the pillow.  Perhaps you feel some shortness of breath.  Can you describe cloudy thinking as if you are fighting a cold or flu?  Tell your physician about those hot flashes and night sweats and more.  Get the information you need to detect what symptoms.   

Give your physician as much information as you can to help him/her better diagnose your situation.  Some of this is a guessing game.   Patient Jane is presenting with recurring fever, complains of heart palpitations and describes a ‘pins and needles’ and sharp electrical shocks in her feet.   The better you describe your symptoms, the better your physician can make judgment calls.  An empowered Patient uses internet based information resources to learn more about “sharp electrical shocks” such that she can ask her doctor about the onset of neuropathy, a common blood cancer affliction.

An empowered patient will learn how to read valuable reports such as your Complete Blood Count (CBC) blood tests.  She will know what these numbers and flags will mean.  If you understand white blood cell (WBC) counts (leukocytes), red blood cell (RBC) counts(erythrocytes) and platelets in the blood,  you can begin to be better prepared to ask questions.  Hey Doc, why have my platelets dropped (crashed) so low?  What is happening to me and why?  Is that why I’m bruising so easily?  

Managing your blood cancer will probably be a long road; I think the longer the better provided your symptoms are under control and you’re making progress.  So, you should take the time to learn as much as possible about your blood chemistry reports.  For example, an educated Patient will understand the meaning of Hematocrit (Hct) and Hemoglobin (Hgb).  I used to kid with an oncology nurse asking-  how are my mean corpusculars, are they particularly mean this week?  Your blood chemistry report shows the Mean corpuscular volume (MVC), Mean corpuscular hemoglobin (MCH) and  the Mean corpuscular hemoglobin concentration (MCHC).  These ratios are reliable indicators concerning the health of your blood cells.  Take the time to learn this stuff.  Some blood chemistry reports show the normal range, for example normal mean cell volume is 86 – 98 femtoliters.   If yours falls to 79, it’s time to raise your hand or make that phone call.    A good physician will welcome your interest and willingness to actively participate in your own care. 

Depending upon your type of blood cancer, some of these indicators are more important than others.  When I was first diagnosed, my blood chemistry report was filled with H’s, L’s and *’s these are High, Low and * flags; they shouldn’t be there.   Understand why your Hematocrit (Hct) is low.  Hematocrit is expressed as a percentage, for example an hematocrit of 25% means there are 25 milliliters of red blood cells in 100 milliliters of your blood, an oversimplification but good enough for this discussion.  A normal hematocrit (Hct) is 42% - 54% for adult males and 38% - 46% for adult females.   If yours is hovering at 34% as mine had, for a man, it’s time to talk with your physician about this.   For a woman, your Hct is low, but not seriously low.    A low hematocrit is referred to as being anemic.   For blood cancer patients anemia indicates bone marrow issues. 

I’m speaking at a Leukemia & Lymphoma Society meeting next week.  Check the calendar here if you’re in the Boston area.  I’m presenting two of my favorite topics centered on being your own Advocate, Clinical Trials and Emerging Therapies.  I’ll summarize these in a future blog, but the essence of my pitch is take the time to learn as much as you reasonably can about Clinical Trials to consider what Emerging Therapies might be used to help manage your cancer.  

Personally, I am a strong proponent of exploring Clinical Trials as a treatment option. There are many proven, effective chemotherapies that “do the job” but at what cost?  If your chemotherapy is based on a popular alkylating agent and you are relatively young, maybe you should explore some alternative biologic targeted therapy that is less toxic.  Perhaps there’s something that causes less damage to your bone marrow (the factory floor) which might leave the door open to some kind of transplant if needed in the future.    I believe that most of us should consider forward looking, emerging therapies that will reflect future outcomes otherwise your treatment plan and you might be considered part of the history.  

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