Blogging in B Minor

So we are opening a new chapter now.  To cut to the chase, the MRI is good and “ok”.  The “ok” part is there is residual tumor – not a lot but there is some at the bottom of the area shown on the film.  We believe it’s been there since surgery – it’s not recurrence at all.  The good/great news is what we suspected.  The whole area has really shrunk down.  Like I noted in the last post, that ventricle in the center of my brain that was so collapsed under the pressure of swelling is now in great shape and all of the edema present from the 10-16 scan is really shaping up – and the tumor cavity itself has collapsed upon itself which is what naturally happens if all goes well. 

So what does all of this mean?  For one, it means that I’m responding better to Avastin than I ever did to Temodar.  Temodar for one is a different drug – it hammers your bone marrow / immune system and I eventually had to come off of it after 7 months because I kept getting sick.  Secondly, it only “managed” my situation.  It didn’t grow but the tumor also didn’t shrink.  At all.  Once I came off of it for good which was around July / August I was in the OR in October as it took off from August to my scan in October.  Again, it only managed it.  So, given Avastin is good for me and I have the vaccine nearly in my hands (it will basically be a week from this Thursday), Rachael and I have decided that we will take the cocktail route – Avastin Infusions + DCVax Brain vaccine injections.  Of course the few that have been in the vaccine trial have done this by using the vaccine with Temodar but this seems counterproductive to me.  Hey, I’m just a patient, not an oncologist but if your immune system needs to be strong and Temodar tears it down, using them together as opposed to Avastin + DCVax seems like the second choice for me.  My oncologist told me there isn’t any data regarding the use of Avastin and DCVax.  Guess what, we don’t have any data on a lot of this!  Even with the other approach there have been some 200 people?!  So we are going to blue sky some of this.  I really have nothing to lose and a lot to gain.  If something goes sideways, then we will sit down and address it.  I’m still going in for MRIs and we’ll likely tighten them up to every 6 weeks to make sure we absolutely on top of this.

So, leukapheresis on Thursday for 4-5 hours, another Avastin infusion a week from today and then, God willing, the vaccine a week from this Thursday….will add updates here as usual.

Cheers,

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