Wednesday, April 9, 2014

When Dealing with CML, Always Consult your Oncologist

When it comes to one’s health I am a firm believer in self advocacy, and what I mean by that is I truly believe that each and every single person should be personally responsible in their own education, regarding their own medical treatment. I believe that in order to make responsible choices in our treatment, we must not only understand our disease, but our treatment options as well.

As patients, many people leave all of their options in their physician’s hands; they give their oncologists the reins and expect miracles. We all need to realize that we live with our bodies twenty four hours a day, seven days a week, and no one knows our bodies’, like we do. Our oncologists’ see us on brief occasions, once in a while and assess our disease during those visits. It is our responsibility to give them clear and concise information regarding our health and to be educated enough to ask pertinent questions; regarding our health, and our treatment.

That being said, we can, and should learn from one another. Social media and the internet have made interaction between patients not only possible, but powerful. We are able to connect with others through Facebook groups, CML Forums and blogs; we are able to share our experiences, our side effects, our complications and our triumphs.

Many ask for “advice” and many freely give it; this is “OK”, as long as it is information that is used as research and thought provoking questions, which should be discussed with each person’s medical professional. None of the advice or suggestions, which are received from other patients, should be implemented without first checking with your own, personal physician.

Take my Bragg’s vinegar theory for example; I deduced that I may have low stomach acid and that may be the cause of my increasing PCR, I brought this theory to my oncologist and he and I decided that I should start taking Sprycel with something acidic. Two negative PCR’s later, and my oncologist is making this same suggestion to other CML patients that fall into the same criteria that I did. This information I shared on my blog, not suggesting to others to change what they are doing, but to share “my story”, and if they were experiencing similar issues, to bring my theory, to their oncologist, for discussion. To date, six others have shared my experience, and my success.

I believe that sharing information is pertinent; it can be powerful and lead to a change in one’s treatment, it can open doors and be used as a platform for discussion. It can be very beneficial to patients, but it can also be detrimental; do not ever make changes to your treatment without first seeking medical advice.
All of us living with CML have one thing in common for sure; we have CML. We also have unique, and often complex, extenuating medical histories therefore, what works for one person, may or may not work for another.

We should continue to support and learn from each other; we should share our stories and new information that we learn along the way, but we must also continue to be our very own, self advocate. Take the shared information and do your own research; make a conscious decision to learn everything that you can about your disease and share your questions and your knowledge with your physician.  If you do not have a physician that you can talk to, then it is my suggestion that you find one.

Here is to caring and sharing; keep it up…..responsibly! 

We need each other!

Thursday, April 3, 2014

Leukemia and Over One Million Page Views!

When I was first diagnosed with chronic myelogenous leukemia, I did not have the foggiest idea how living the rest of my life with cancer would affect me, my husband, my family and friends, and so many others, to boot! I was scared, confused, angry, frustrated, and needless to say; very sick. At that time, I knew little about leukemia, my prognosis and where my journey would lead.

I found that there was very little information readily available about my type of cancer and quickly realized that I must educate myself in order to understand my disease, my treatment and my options. In the meantime, my family and friends were just as eager to understand exactly what CML is and how it was going to affect not only the length of my life, but the quality of my life, as well.

Due to my limited amount of energy, I created a blog for my family and friends, so that they could follow my journey without my having to repeat the same information over and over; I was simply too exhausted to talk to everyone. My blog became a great way to keep everyone abreast of my progress, educate others as I was educating myself, and give them a snapshot of what I was going through and how I was feeling. I did not sugar coat the bad stuff and made sure to revel in the good stuff. I shared what I was doing, how I was feeling and how I was learning to accept the fact that I would have cancer, for the rest of my life.

What I did not realize was that my blog not only impacted my family and friends, it also began to impact many others, too. Complete strangers began to find my blog and cheer me along. They wrote words of encouragement and empathy; they gave me strength and hope. Some days they laughed with me and some days we cried. They shared their stories and begged me to keep writing.

Others with CML, newly diagnosed and veterans alike, also began to find my blog; apparently I was filling a void. I have been poked and prodded, begged and pleaded with, to turn my blog into a book. I have laughed at the suggestion and poo-pooed the idea for three years; all the while, my blog’s audience has continued to expand. It has been picked up by various publications and has gained me some pretty interesting opportunities. At one point I said, “If I ever reach one million page views, I will consider it.”

Well, that day has become a reality; my silly little blog has reached 1,062,321 page views, as of this very moment. What started out as a way to communicate with my closest family and friends has turned into a place where people with CML, other cancers and chronic conditions can go to find answers to some of their questions, and more importantly a place where they can share someone else’s journey, while relating it to their own.

Being an inspiration to others was never my plan; sometimes God has his own plan, and sometimes it takes a sledgehammer to get one to follow; I am thinking that I had better consider that this is God’s plan and to start listening.

My husband truly believes that I contracted CML in order to help others along their own difficult journeys; this is difficult for me to believe, as I feel as though my feet could never begin to fill those shoes, but if hearing my words help even one person, then I am happy to have given back.

Thanks to all of you who have followed my blog, supported my efforts and have joined me on my journey in learning to “Dance My Way Through Leukemia!”

Tuesday, April 1, 2014

Cure Magazine May Support Bragg’s Apple Cider Vinegar Theory

Apparently I was not too far off the mark with my low absorption of Sprycel theory which led to an increase in my PCR, despite a medication increase. I believed that for some reason I had a reduction in stomach acid and my PCR began to climb. After I talked to my oncologist, he thought that it was worth a try, to take the Sprycel with something acidic; I have been using Bragg’s Apple Cider Vinegar and to my delight, I reached PCRU, twice and have lowered my dose of Sprycel from 140 mg per day to 70 mg per day.

It is also my theory that by lowering the dose of medication, I will lessen the side effects I suffer, and the lower dose will be less taxing on my body, especially my kidneys and liver!

So low and behold; I ran across and article written December 10, 2007 that supports this theory. It states that “The effect of food on drug potency may justify new research.” Evidently they did not get very far on the research!

Anyway, here is the article; I believe it is worth the read.

Take With Food?


The effect of food on drug potency may justify new research.

It’s no surprise that foods interact with cancer drugs and other medications. Chemicals in grapefruit juice, for example, prevent the breakdown of some drugs in the body, leading to higher-than-expected—and sometimes dangerous—levels in the blood.

 Still, it was big news this past summer when two researchers from the University of Chicago calculated that taking a breast cancer drug with food could save patients—and their insurers—$1,700 per month. The “bioavailability” of Tykerb (lapatinib) increases more than three times when the drug is taken with a high-fat meal, wrote Mark Ratain, MD, and Ezra Cohen, MD, in a Journal of Clinical Oncology commentary in August. Their analysis was inspired by a Dartmouth College phase I clinical trial with 27 patients, discussed at the March 2007 meeting of the American Society for Clinical Pharmacology and Therapeutics.

“Thus it is possible that one, 250-mg Tykerb pill, accompanied by food and washed down with a glass of grapefruit juice, may yield plasma concentrations comparable to five 250-mg pills on an empty stomach,” Drs. Ratain and Cohen wrote.

“This certainly isn’t the only drug-food interaction,” Dr. Ratain says, “but this drug is unique in the magnitude of the interaction—even remarkable.”

It’s not just about money, Dr. Ratain says: Taking less of a drug, such as Tykerb, could mean fewer side effects (diarrhea is a major one with Tykerb).

But don’t start cutting your dose. Tykerb’s label—like all drug labels—was written based on phase III clinical trial tests for safety and efficacy, says Sarah Alspach, manager of oncology product communications for GlaxoSmithKline, Tykerb’s manufacturer. In early testing, taking the drug with food produced a wide range of bioavailability—some people ended up with much higher blood levels of the drug than others, probably because of different metabolisms and differences in what they eat, Alspach says.

“The effectiveness of Tykerb depends on the right amount of drug reaching the cancer cells. To make that consistent, it is taken without food,” she says. “There’s no evidence to support that adjusting the dose would be safe or effective.”

Dr. Ratain agrees patients should follow label directions precisely. He’s frustrated, however, by the lack of clinical testing to see if taking less of the drug—with food—could be both safe and effective.

Given the “escalating cost of medications,” Dr. Ratain says, advocacy groups ought to push for tests of Tykerb with food. That’s also true for other cancer drugs, he says. Tests have shown Tarceva (erlotinib), used to treat some lung and pancreatic cancers, becomes significantly more bioavailable when taken with food. However, like Tykerb, the manufacturer directs patients to take it without food to better control its levels in the bloodstream.

Dr. Ratain and his colleagues are practicing what they preach, currently running clinical studies on the interaction of grapefruit with the drug Rapamycin (sirolimus) for patients with lymphoma, multiple myeloma, and chronic lymphocytic leukemia.

Other food-drug research is in earlier stages. In the test tube, chemical extracts from cranberries boost the ovarian cancer-fighting capacity of platinum drugs, which include cisplatin and carboplatin. Nicholi Vorsa, PhD, and Ajay Singh, PhD, natural products chemists at Rutgers University in New Jersey, reported this past summer at the American Chemical Society meeting in Boston that pre-treating ovarian cancer cells with cranberry juice extracts made those cells six times more likely to be killed by carboplatin than untreated cells. Vorsa says it’s not entirely clear how the cranberry extracts may trigger the effect.

Vorsa says it’s no surprise that plants and foods contain powerful chemicals, which may be used in combination with drugs to fight cancer. “Think back to Hippocrates, who said food is medicine and medicine is food. Maybe we’re going back to an old idea here.”