Blogging in B Minor

At this point I’m in full research mode on chemo.  The conservative recommendation is to continue on my alternative 7-day regimen through the 1 year milestone.  However, there are no studies or hard data to suggest that it improves survival rate.  The problem so far as I can see is that all of the research centers around and has resulted in the “standard of care” which is 6 months of “pulse therapy” post-surgery and radiation.  Once you get there, it’s up to your Neuro-Oncologist to set you on the right course.  Stop chemo altogether, switch to something else such as Tarceva, keep going with Temodar or if you have growth take more aggressive action obviously including surgery – both traditional and stereo-tactic radiosurgery.  So, no one of course can predict. 

My conversations have gone sort of like this:  So if I were to continue therapy, what has your experience shown in terms of liklihood of tumor growth vs. management for a grade 3 mixed glioma?  Well, it depends.  Sometimes they grow, sometimes they don’t.  And if I don’t continue?  Same result.  And I continue to the year marker and stop?  It could grow after that or not.  There are patients that stop and it’s stable for years and then some patients have aggressive tumors that grow quite quickly.

The bottom line for me?  It is a) in God’s hands at the end of the day but b) I have to research this just as I did with my decision to have surgery to make sure that I am making the best decision for me and for my family.  I am going to UCSF and having the look at my film again.  I am also having their Department Head of Neuro-Oncology look at my case and provide a second opinion (the conservative recommendation I have is to continue).  I am also digging around at Harvard for another opinion.  In concert with all of this, I am performing my own independent research.  As I have always maintained, you must be your own advocate – no one will do it for you.  I can go to my doctor and sit in a room and just shake my head yes or I can go out there and get good, solid info from some of the most imminent sources in the field.  The latter is what I want.  This is my life on the line.

That’s it for now.  For now, though, I have been off for a week and as a special present I am taking a second week off of chemo – yeah!  This is not a big deal since I have been by the book for 6 months.  Back on it a week from Monday but this is a welcome break.

Thanks again for all of your thoughts and prayers regarding my MRI.  They are SO appreciated.  The comments and all the emails I received mean so much to me.  You have no idea.  Thank you.

Subscribe by Email RSS Subscription