Blogging in B Minor

First off I want to thank everyone for the kind emails and comments on my blog.  I sincerely wish that I could reply to each and every email but I simply cannot.  But know that I do take time to read them – I print them and read them before I go to bed when I have time and can sometimes read them when I have spare time on the weekend.  I received a nice email from Leslie Sellars – THANK YOU.  Another from a friend of a gifted artist named Kimo who is struggling with a GBM and is interested in the DCVax Vaccine – I wish I could help!  What I Can tell you is that it involved a lot of FDA paperwork/approval (a stack of paperwork and hospital board approval) but Dr. Linda Liau (sp?) at UCLA is running trials and he may get help there – so many emails I won’t drone on but I just can’t possibly respond to them all.  And I have so much going on at the moment.  So here is the latest just to keep friends, family and blog readers up to speed:

As you know the end of last week wasn’t so fun.  Tumor recurrence news swept those dark rain clouds from October right back over our lives again.  After talking about it Thusday night, trying to just get over the shock that this is just not going away (which we of course knew but now it was reality), we started our weekend with a nice night out on Friday, trying to just get back to life as best we could.  The proverbial rain was still pouring down though and we really didn’t have an umbrella – shelter is hard to find when you receive this news, particularly when the recurrence happens in 30 days.  Very similar to the scenario in October.  Surgery isn’t really the first option here because a solid cheomo plan needs to back it up.  I failed Temodar and Irinotecan.  Perhaps Avastin.  Headaches continue.

Moving on to Saturday night (oh yes, it gets better!!), I started to feel some pain in my upper-right wisdom tooth.  I never had them pulled – never had to because they didn’t cause any issues.  Well, come 9pm I am in utter pain!  God, can I get a break here?!  More clouds, thunder – it’s a full-on storm now.  What else can really happen??  I guess you can visit the blog posts around July of 2007 and see what can be worse – having a newborn and brain surgery 2 weeks apart?  I don’t know anymore!  Where is the umbrella please!!  An old wives tail is soak cotton balls in vanilla extract and put it up in there and it will numb it up – some relief.  Finally I fell asleep.  Strangely enough it would subside during the day then start at night. 

Luckily my mother-in-law works for a great dentist so I had it extracted on Monday but I have to skip my Avastin infusion today because it would interfere with the healing – not so good.  It’s just more drama.  We’re used to it!  The tooth problem is nothing.  Now it’s the chemo plan. 

So, I am not just sitting idle in spite of all this.  For now, I started a drug called Valcyte. There is a belief that GBMs may be caused or at least spurred on by cytomegalovirus (CMV), a common herpes virus. An interesting suspicion, which is supported by several studies.  A two-year trial with Valcyte of Glioblastoma diagnosed patients was recently completed. These results have not been published yet. It would be a breakthrough if the treatment with an anti-CMV drug prolonged the five-year actuarial survival rate significantly.  So why not?  I will also probably use Thalidomide.  Remember Thalidomide babies?  The premise is it cuts off the blood supply to the tumor.  It’s used mainly for multiple meyloma but it seems to have some efficacy against GBMs.  There are none of the bizzare issues in adults because we are obviously done growing.  

I have a meeting tomorrow to chart out more of the strategy.

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