Want My Opinion? Make Second Opinions Count!

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Dr. El Geneidy and I, July 2019
Six months ago after starting chemo for the second time, my end game was to cure CLL once and for all. It is still to do so. I currently have .998% (Less than one percent!!) leukemia cells in my blood. Though doctors will not call this remission. Everyone can agree that this is progress. So now that I have had five rounds of chemo and my doctor has given me a very clean bill of health, my goal is to use my current leg up to identify all of the ways that I can create an environment of highest health and wellbeing: the cure!
Last week my cure journey took me to my original oncologist in South Carolina. After directly stating my intentions to cure CLL a whole year ago, August 2nd, I come to a pivotal point in the road, a revisit to where my awareness of this journey began. When I was diagnosed with CLL, it had been months of questions which just lead to more questions. My discovery was clear within the experience though. After my first chemo treatment, the lymph nodes in my neck were noticeably smaller, like they were being melted. This time around, things were not as smooth. This time I was unable to have the last of the prescribed 6 treatments because my immune system was suffering so.

Seeking a second opinion was key. So to say the least, I was excited to go back to my original doctor with questions that I could not have carried to him previously. After 33 chemo injections, I am more informed as are the cancer cells, which are becoming “smarter” as my SC doctor shared. I realize now more than ever how much smarter I now have to be. (More on what that will look like soon)
To make this appointment the most beneficial, it was important for me to be prepared. Here are some of the things I did and questions I asked. I hope that you find them helpful on your journey. Though you may not have CLL and all of these ideas may not pertain directly to you, some of them may. Most people want to find greater and more sustained health! Even if you do not have cancer, maybe a loved could use this advice from someone who has been there. Something brought you to this blog today, right? Being prepared to get the answers that you seek about your health and/or your loved one’s takes some leg work and consideration. Here are some ideas to get you started. 
  1. If you don’t currently have a doctor whom you can consult for a second opinion, it will be important for you to do some research. If I had not had my previous SC doctor, I would be going to and may still go to a doctor that I found very intriguing at the Leukemia and Lymphoma Conference this past May. Search for specialists who can give you further answers then whomever you currently consult. 
  2. Request your medical records to date and go through them before the appointment. Doctors take copious notes. When you request your records, not only do you get blood work and results from other tests you’ve taken, you get these notes as well. Read through your file. Anything you do not fully understand becomes a question for further inquiry. 
  3. Come up with a list of questions based on past, present and future concerns. Questions like: What advances have been made since I began? What is the percentage of success for the treatment I will have or am considering? What medicine, supplements or treatments are required now, and why? Be sure to ask why!
You do not have to take one doctor’s word for anything. If you have insurance, even if you don’t, you can find ways to consult with doctors that could have the answers you need. Sometimes an email reaches exactly where it needs to go at just the right time. Sign up for newsletters where doctors,/specialists speak about your concerns and new advances, and reach out to whomever you can. No matter what, this is your healthy journey. Make it count! 
Sat Nam

Courtney

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