Blogging in B Minor

We are all set with UCSF and our appointment tomorrow at 11am.  I picked up my pathololgy slides yesterday and CDs that contain about 15 MRIs.  The rest of the data was sent to UCSF by the Neuroscience Institute (dictations, sugical reports, etc).  UCSF has a number of trials taking place at any given time including some that are vaccine-based. 

Of course, the purpose of this consult is to continue building a strategic roadmap for my treatment plan.  I need to have this in place.  I’m used to operating this way in life anyway, albeit mostly in business.  Regardless, I’m not going to find myself in the middle of the DCVax-Brain vaccine trial, have something go wrong – whatever that might be, and then be forced to figure out what’s next or fall back on the standard of care.  That is the worst case scenario -  being forced to make a monumental decision on a dime.  So, to have this somewhat figured out, exploring the landscape, having a sense of what is out there makes a lot of sense and will feed the plan.

I’ll certainly post some good information about the appointment over the weekend. 

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Although I am still waiting for formal documentation, I had a discussion with the Department of Neuro-Oncology at UCSF on Friday evening.  After going through all of my information they are in agreement that the tumor is stable  and that it is in no way worse.  This is great news!  He also indicated that they concur that staying on for another six months would be the right course given my tolerance of Temodar, the stability of my tumor and the fact that my blood work is allowing my body to withstand continuing treatment.  They agree that stopping at a year makes sense, primarily due to the side effects – namely leukemia. 

I asked what course should be taken at a year – of course that is the million dollar question!  They recommend that I stop and if there is growth after that, surgical intervention is likely the best course given the location (primary motor cortex) and the fact that I had a 0% resection in my last surgery.  As long as I am neurologically in tact, which I have been throughout, that is the last thing on my mind and on the list. 

I will have a comprehensive report hopefully tomorrow or Thursday but this gave me all I needed to continue Temodar – cycle 7 started last night.  On we go.  I’m sure there will be some details in the report that will give me more information and I’ll share that here but at a high level, this is what I was after.

Again, second opinions are important.  This one came in consistent with my Neuro-Oncologist’s recommendation.  The interpretation of my MRI scans, too, were consistent.  Great – I have the assurances I need to move forward and it I feel 100% confident that I am moving on with a treatment plan that is the best for me, my lifestyle and my family.

More to come….

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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.

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