Fighting cancer like it's a full-time job?

So I have come to the realization that my fighting cancer nearly takes the attention of a full-time job. I am not complaining as there is nothing productive that can come from that type of behavior. I am just letting you know that I approach my disease as I would any job....with professionalism, completeness in care and thoroughness in research.

With the pending change in medicine approaching, I spent last weekend researching clinical trials that might affect my health. There is a new drug being tested called DM1. I assume if this drug is successful, then it will get another name that is far more difficult to pronounce. :) However, until then, DM1 is the name.

We tried to get me on another version of this trial about four months ago. However, we were not successful because my liver enzyme counts were out of whack from the cancer that had grown on it. Over time, my liver enzyme counts have gotten better. This bile duct surgery that I had recently should help to bring most of those counts down for good. However, the liver enzymes are extremely reactive...to everything. So, my counts were always high while on the chemo and that is typical. My counts switched from being high based on cancer to being high based on the chemo.

Regardless, I felt slighted because I didn't make the cut in this first trial. I am so competitive. I try not to show it to the outside world because it can be an unattractive trait, when out of balance. However, this is me. I am competitive at my core and I don't like getting a bad grade or being rejected on a clinical trial. I like to be the best that I can be and I want the best medical care.

Let me stop and clarify that I absolutely believe I have the best physician for me. He is so thorough and kind. He has hundreds of patients, yet he always gives me his time and 100% of his focus. If I send him information about research, he will always follow up. If I need other doctors, such as in the bile duct surgery, he sends me to the best one he knows and asks them to expedite the surgery as best they can.

I believe in him and trust him implicitly because over time, I have learned that he believes in me. He is always up-to-date on the latest medicines and pursues optimal health for me. All that being said, sometimes the best medicines are not always available in all facilities.

With DM1, it is doing so well, that the drug company has opened up a new trial. I found the trial on clinicaltrials.gov, which is a web site my oncologist told me to view. The original trial was closed while I was on this last set of chemotherapy so I didn't think I would get in. However, this new trial opens things up for me. It is so new that the web site doesn't really indicate where the trial is available.

So, I spent the weekend trying to figure out the closest location for the trial. I found a co-survivor who is on the first trial and she told me this second trial might be available in Jefferson City, MO....about two-and-a-half hours from me. She found me the contact information and I called the doctors office on Tuesday. I got as much documentation from them and handed it over to my oncologist on Tuesday morning.

This is how you know you have a good doctor...when you give them information about a competing facility that has the right medicine for you and they encourage you to pursue the medicine. So, our next steps are on hold right now until I figure out if I make the cut for this trial.

My oncologist's office is forwarding all relevant health information to the Jeff City office. Once they review things, and if I make this first cut, then I will go to Jeff City next week and they will do scans, bloodwork, etc. Trials are very specific...in most instances, all work on the patient must be performed in a specific facility. So, even though I had scans three weeks ago, those won't count for the trial. It is fine. I don't really care because my family and I will do whatever we can to get me the best treatment.

People often think you have to go to MD Anderson or Sloan-Kettering to find the best medical care. This can be helpful, but is not always necessary. The purpose is to find good care in a quality physician who knows how to tap into the right resources and has time to research. I also think it is helpful that my oncologist is ONLY focused on breast cancer. Each cancer is so unique and complex. Just focusing on one cancer is still overwhelming, but this type of approach ensure that you are getting someone who focuses on your disease.

So, the plan is to pursue this trial. The medicine is chemo-powered, but is only tagged for her2neu cells. What this means is that it has the power of a chemo, but will not kill good cells in my body with the bad. There are her2 cells on the heart that can be affected, but that is the only other concern when dealing with her2neu drugs.

If, for some reason, I don't "make the cut", then we will continue with another milder chemotherapy and the two maintenance drugs I am currently on, Herceptin and Tykerb> See why this cancer-fighting business seems like a full-time job. Whew, so many drugs to consider, so many effects to consider.

Regardless, with any of the drugs in my future, my white blood cell counts should normalize, my hair will grow back and I will not be anemic anymore. With my bile stent, my digestive system is getting back to normal and I am feeling better.

I am not delusional, this year has been a difficult one. However, my story is a testament that paying attention to your health and being in charge of your medical team can make a difference. I don't really mind focusing on my cancer like it is a full-time job. I wouldn't know how to approach it with any less zeal than if I were getting paid for it.

Please take charge of your health now because it matters. You can make a remarkable difference!

Blessings,
Lolo