Chasing The Cure.

Although my journey began back in 2006, I don't think it was till around 2008 that I began doing "more" research with regard to treatment options. Not that I had not already been scouring the Internet blindly looking at every possible thing out there with regard to stage four Non-Hodgkin Lymphoma.

I had been, but somewhat blindly and not knowing what exactly what it was I was looking for, or knowing how to "weed out" the good from the bad on the Internet. Let me tell you there is an answer to anything your looking for out there in cyber-land, and you'll find both pro's, con's and everything in between. Mind boggling actually.

But, back to 2008, this is when I was diagnosed for the third time, second with NHL, and now the possibility of a Stem Cell Transplant was being put in front of me. This is when a lot more questions were asked, and the desire for more information came about.

I was sometime around the end of September or beginning of October of that year that I was referred to Dr. Xenocostas at the Cancer Center of the London, Dr. Xenocostas is a Consultant of Hematology and was whom I was referred to. My initial consultation with him was very thorough  and I learned a lot. This was actually the first time I had an Oncologist put numbers and odds in front of me.

A whole new perspective had now come to light, these numbers and odds I think were my wake up call to start taking charge of becoming an informed patient. I don't know about others, but for me up until this point, I just went along with everything I was being told, and not knowing what was going on most of the time, took it as it came to me.

Now was the time for question, lots of questions. Also, I became part of several social media groups in order to sort out where to find the "good" information. I thought this would make my search for information easier. Well, let me tell you, there are also plenty of "good" sources of information out there. What I had to do was narrow it down to a select few that were trusted sites of those I spoke with on social media.

But back to Dr. Xenocostas and my pending Stem Cell Transplant and the "numbers" and "odds" associated with it. Dr. X. informed me that in my current state at the time I probably had about a 20-25 percent chance of achieving any type of long term remission. So, what would my odds be by proceeding with the Stem Cell Transplant? The answer came from him pretty quick, and that was, my odds with the Transplant at best would be a 50/50 chance at any type of long term remission, and that was the best he could give me.

After filling me in on the procedure and all the risks involved, I made the decision to proceed. There was very slim chance of a cure, however I was willing to do what it would take to get the longest remission period possible. The details of what happened next and the transplant itself are described in a previous post.

This is what I would probably call ground zero, or the beginning of my chase for a cure. I was not going to stop at just 50/50 odds, I wanted more, I want a cure! Since the transplant I've had two relapses, and not really sure I can call them relapses, as the Non Hodgkin's had transformed into a Hodgkin's! The first relapse was a stage one, confirmed by the surgical biopsy of a node on my neck. Turned out to be a stage one, Nodular Lymphocyte Predominate Hodgkin's. A year later relapsed again, however this time a stage three diagnosis. Nodular Lymphocyte Predominate Hodgkin's once again. A Surgical biopsy of the enlarged nodes in my chest, a bone marrow biopsy and as well a PET/CT to stage it were conducted.

During the initial conversation with my Oncologist she discussed with me a clinical trial I had previously asked about, and encouraged me to seek a second opinion in the U.S. where I could also try to get enrolled in that clinical trial. I did just that, I called the Karmanos Cancer Institute in Detroit Mi. where I set up an appointment for the second opinion, as well as for them to re examine my pathology samples.

A copy of my medical records were sent over to them, and as well I picked up my pathology slides to bring with me for them to look at. All of this was being paid for out of my own pocket, as OHIP does not cover for  out of country second opinions, and will not cover a clinical trial as it is deemed experimental. I had to pay for the consultation (second opinion and written report) and as well it was an additional fee to look at the pathology slides and written report.

Unfortunately I was not a candidate for the SGN-35 (Adcetris) trial due to already having CIPN, (chemo induced peripheral neuropathy) which can be a side effect of Adcetris.  I did learn a little more about my current diagnosis from this visit and the report, however the majority of what was in it, I already knew. That's all part of chasing the cure and looking for answers. I've had several Dr's look at my case and for the most part the answers are always the same.

Is there something more out there? Is there a cure to chase?

I, in my own opinion, I believe there is. What is it? and were is it? are the answers that need to be found. In the meantime I will continue my own research and also look at the recommendations of others.

Until then, it's Watch & Wait.