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!


  1. Checking up on you as it has been several days since you posted. I know you've done this before and all was okay... and you are likely just busy with the warmer weather.... Still a brief comment would be appreciated. As for me, I've been off Sprcel more than I've been on due to high bilirubin levels. Will see a specialist next month for that and another specialist tomorrow plus that BCR-ABL test. -Donna

  2. HI Donna, I am trying to adjust to the new dose of medication and my oncologist is requesting another PCR a month after I started the higher dose of Sprycel to make sure the PCR is not continuing to rise.
    Please let me know how you fare!


Bricks for the Brave!!