Mind Games...

I haven't done this in a while but I've been looking over my shoulder tonight... I read a post by an 18 year old newly diagnosed stage 4 Hodgkins survivor on my Lymphoma Forum and thought back to when I was first diagnosed.

I remember it all being so surreal and overwhelming. I had originally been told I had asthma and was given inhalers to "get rid" of it. After doing this for 3 months and contiuing to have symptoms I went back to my primary physician and demanded an x-ray. I'll never forget the look on my doctors face when she told me that I had some "abnormalities" in my lungs. Everything after that was a blur and of course the rest is history.

Back to the newly diagnosed 18 year old... He posted tonight with questions on what he should do, smart move. I was referred to a supposedly brilliant Hematologist/Oncologist who assured me that everything was going to be ok. He started me on the then goldstandard primary chemotherapy regimen for Hodgkins called ABVD (at least here in the U.S.). This is the same advice this young guy is being given by his Oncologist. Turns out, this is not the best way to go. There's another primary therapy regimen that was first used in Germany called BEACOPP which had been shown to dramatically increase the cure rates for late stage Hodgkins. I was rushed into my first line treatment without being given this option and it turns out it was the biggest mistake of my life (or so it seems). It was so hard to know this at the time though. I went for a second opinion (after my first infusion of ABVD) and was given the BEACOPP option by my second Oncologist at the SCCA and it scared the crap out of me. He told me about the 7% chance of developing a secondary cancer, Leukemia and the more severe side effects. I didn't want any part of it! If I only would have known... Perhaps I would have been more compelled to go down this path if I had originally been given the statistics. I felt I had a safety net though after being told that if after 2 cycles of ABVD my disease wasn't responding I could switch to BEACOPP. So, after 2 cycles of ABVD I had a PET scan and there was no evidence of disease! What I relief I remember thinking. Of course I continued on with the ABVD and because my disease is so crazy, it grew throughout the following 8 treatments and here I am today still fighting the disease. This is after subsequent double high dose chemo/radiation then stem cell transplant, go figure. Should I have started with the BEACOPP in the beginning? Would it have really mattered? Statistics say yes but statistics also say that after a clean PET scan after two cycles of ABVD cure rates are 90+ percent so go figure. I'm of course skeptical of statistics but can't help to think what may have been...

I guess you can't go back and change things right? I know looking back won't do me any good moving forward but it's tough sometimes. I made sure to tell this young guy that he should carefully weigh his options and get as many opinions before he starts his treatment. It's obviously the most important decision in his life. Sometimes (like tonight) I wish I had someone telling me the same thing when it was all going down but know there's nothing I can do about it now.

I guess everything happens for a reason though right? I guess one of these days I'll figure it out...