Blogging in B Minor

I mentioned that Rachael and I had an appointment with my neurosurgeon to go through our strategy moving forward.  Rather than go into a lot of detail regardint the hour-long discussion, here is what came out of it:

1. We knew I had been “accepted and approved” into the DCVax-Brain program.  The final hurdles were a) did they have enough tumor to manufacture the vaccine and b) did I have the genetic markers necessary for this to work.  The answer to boh questions is YES!
2. We were asked about treatment options.  First is conventional.  You perform surgery then use standard chemo.  The second is a clinical trial that has been established.  The third is experimental (the vaccine)
3. We have opted for the vaccine, however, we have also decided to do a consult at UCSF to see what other phase I/II trials they have so we aren’t putting all of our eggs in one basket.

As with anything, experimental is just that - it could yield amazing results but there could also be side effects.  Regardless, we have to be aggressive so that is why we are going with the vaccine

More to come on all of this.  It will take 4 weeks to manufacture the vaccine so in the meantime I’ll rehab my left side and spend time with my family…

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Tags:  Brain Tumor , Faith , hope , My Story , recovery , vaccine

Rachael and I are going to meet with my Neurosurgeon tomorrow at around Noon.  The meeting was set up on fairly quick notice but mostly because I’m pressing.  The vaccine work appears to be tracking in the background although as I have said before, this is a grade 4 tumor.  There is no single solution, vaccine or not.  If there is one premise that can be learned about high grade gliomas it is this - you have to keep them guessing. 

Our meeting tomorrow is going to be one of strategy.  My doctors have been looking far and wide at many different types of treatment - to potentially augment our vaccine treatment if it is not performing to our success criteria and b) as follow through after the vaccine.  A lot of dialogue has taken place between the institute here and UCSF as I understand it but of course I will find out a lot more tomorrow.  Well, make that today - it’s 1:15am!  Which brings me to my research.

I’m not ususally a night owl at ALL.  In fact, I’m in bed at 9 or 10pm.  There are times though that I think I just need to put some hard work in and this happens to be one of them.  Before my first, I spent so much time researching, amassed the research library you’ll find under the Library Tab above but most importantly, armed Rachael and I with information we needed to make intelligent, well-informed decisions about my care (i.e. second opinion re watch and wait vs have surgery).  So tonight is no different.  I may not sleep - I do have a lot on my mind tonight.  We talk about comment about staying in today.  I am squarely in today - believe me.  And today is about focusing on my treatment options, my health, working with the doctors and Rachael and ensuring that I have the latest “refreshed” information I can.

There are a number of treatments out there that will likely come up.  One is something called CDX-110 which I have heard of.  I really don’t know if this is feasible or not.   With CDX-110, the vaccine targets an abnormal form of a growth-promoting hormone and the vaccine is thought to boost the immune system’s ability to fight any residual cancer.   Another is a treatment at UCLA.  It’s different than the DCVax-Brain.    There will be countless others and some criteria by which to select, prioritize and implement a treatment based on where I am in my recovery process.  However, it’s clear that the DCVax-Brain is the treatment out of the gate that is being pursued.

If I didn’t mention it, I have placed a number of docs in the library tonight should you be interested:

• State of the Art Therapy for GBM
• Novel Vaccine Boosts Survival in GBM Patients
• GBM Vaccine Treatment - Double Expectancy?  (WRAL News Story)

That’s all for now.  I am going to try to get some sleep before the whole night is gone!  But this was time well spent.  Between the time and research I have already put into this and tonight’s work, I think we’ll have a productive discussion.

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Tags:  Brain Tumor , Brain Tumor Research , brain tumor vaccine , Dr. Allan Friedman , GBM , hope , My Story

I mentioned that we pushed the surgery one week to give us more time to seek a trial that allows me to take advantage of a new vaccine that is showing amazing results in GBM patients (GBM = Grade 4 brain tumors which is what my tumor have now become based on our impressions of MRI).  The vaccine that is our focus is called DCVax-Brain. 

DCVax uses a patient’s own dendritic cells, the starter engine of the immune system. The dendritic cells are extracted from the body, loaded with tumor biomarkers or ‘‘antigens’’, thereby creating a personalized therapeutic vaccine. Injection of these cells back into the patient initiates a potent immune response against cancer cells, resulting in delayed time to progression and prolonged survival.  DCVax-Brain is designed to specifically target Glioblastoma Multiforme (‘‘GBM’’), the most lethal form of brain cancer. DCVax-Brain has entered a Phase II FDA-allowed clinical trial, which is designed and powered as a pivotal trial (i.e. a trial from which the antigen developer may go directly to product approval). Following this trial, the maker anticipates filing a biologic license application (or ‘‘BLA’’) with the FDA for DCVax-Brain.  

Based on trials covering calendar year 2007, the long-term follow-up data are now as follows.  Look, if you have been reading my blog for any length of time at all, you know I’m not someone that holds on to stats but if your journey in fighting a primary brain tumor moves into this territory, you have to look at this data if you are choosing alternative treatments.  Fortunately for me, I have God working in my life so incredibly that my Neuro-oncologist is on top of the world of brain tumor trials, alternative treatments, etc. and we are pulling out all of the stops.  So, go for a 100% resection next Wednesday and follow that up with the DCVax vaccine.

Data so far:

•  8 of 19 patients are still alive (ranging from 24.5 months to 92 months), with median overall survival in all patients of 33.8 months (p < 0.0079) (the “p value” measures the likelihood that the observed clinical effect is due to chance:  a ‘p’ value of 0.0079 means that there is a less than 1% possibility that the longer survival time of DCVax(R)-Brain-treated patients is due to chance);
• 5 of the 8 patients who are still alive show no signs of cancer recurrence, with follow-up time ranging from 41 months to 92 months;
• The median time to progression (i.e. tumor recurrence) is 18.1 months,  compared to 8.1 months for patients treated at UCLA during the same time period (p = 0.00001);
• 90% of patients have surpassed the Standard of Care median time to progression of 8.1 months;
• 84% of patients have surpassed the Standard of Care median overall survival time of 17.0 months;
• To date, 68% of patients receiving DCVax(R)-Brain in addition to Standard of Care have lived longer than 2 years, 42% have lived longer than 3 years, and 26% have lived longer than 4 years (48, 54, 57, 62 and 92 months so far);

So, my humble request?  Please pray that I can be enrolled in this trial.  This trial will yield so many benefits for me and my family.  It will extend my life, allowing perhaps other treatment modalities to come along and further extend my life.  26% of patients living longer than 4 years.  That’s amazing.  And some out 62 and even 92 months - with a GBM?  Unheard of.  So please pray for this and my second request is if you could pray for my surgery and my family - just that everything goes well, that my family has comfort and peace, can garner strength in the Lord and they do not forget He is there - that my young sons are protected and safe, are encouraged.

Thanks to everyone….

God bless

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Tags:  Brain Surgery , Brain Tumor , Brain Tumor Research , Brain Tumor Resources , Christian , Christian Resources , clinical trial , DCVax , deficits , Faith , GBM , glioblastoma , glioblastoma multiforme , hope , prayer , Resources (Brain Tumor) , Surgery

This last Sunday we were so happy to have Nick Vujicic at Bayside Church in Granite Bay, California.  For those of you who don’t know his story, I posted about Nick back in April and you should check it out.  Briefly, Nick was born without arms and legs - a quadriplegic.  He of course was ridiculed as a child and asked many questions - why are you the this way and he didn’t know.  He was asked why he didn’t know and he’d respond “I don’t know”.  No one knew.  It just was.  Fast forward and instead of living a life of depression and giving up, he has taken the opportunity to find God, realize His plan was to use him and his testimony as an example for others and to inspire people around the world that regardless of your circumstances, God will take you through anything and what matters is what is on the inside.  His web site is amazing.  He has DVDs and other materials that are inspiring.  I had a chance to briefly meet him afterwards and tell him a bit about my my situation.  He identified as he said during his message - why was this happening to him?  Why did God choose to do this to him?  If God can do anything, give me arms and legs!  He said he prayed about this over and over until he accepted this as his circumstance.  He still prays but he also realizes that life goes on.  I told him that I was in the same place, just a different situation.What a great guy.  Check out his web site.  He is truly inspiring.  He has traveled the world over and will soon be on Oprah.  Cheers 

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Tags:  Brain Tumor , God , hope , inspiration

I’m really getting back to a pretty normal life now.  My son Aidan is starting in on his first year on a soccer team, I’m coaching so I’m out there on Wednesdays and  Fridays with games on Saturdays that start in September and all in all being off of chemotherapy for 6 weeks or so (can’t really remember how long now!) has been great.  I certainly remember what it’s like - and when I was on it I just accepted life as it was - you have to.  But I’ll take this.

The only issue I’m dealing with is I’ve had some small focal seizures in my left bicep that are more like muscle spasms but my neurologist and I both agree they are not.  I could chase them with meds or just take an extra pill when they occur which is exactly what I’m doing.  They occur every once in awhile and are more of an annoyance than anything.  They don’t happen too often.  I had a period about a week ago where I had them over a 5 day period every day for awhile, some lasting for 30-45 minutes.  However, the instructions here are not like before.  Before, if they lasted more than 15 minutes it was “go to the ER” but because these are so mild I just ride it out.  One day I did take an Ativan and went to sleep.  Other than that, all is good.

We are going on vacation for the first time in a long time!  Heading to Victoria BC.  We’ll be gone for 5 days, just the two of us.  We haven’t gone away since we went to Paris and that’s been over 2 years.  Well, the last 2 years we’ve had a job change and major move, a high risk pregnancy w/bed rest, a brain tumor diagnosis with surgery, radiation, chemo, emergency c-section and first year with a newborn.  Kind of prevents you from taking a vacation!  So, I’ll post some pictures when we get back.  Victoria is beautiful.  I went there a very long time ago but remember it well.

That’s it for now but I’m feeling about as good as I did in May of last year before my surgery in June.  I’m playing some music when I have time.  It’s a bit more difficult with Keegan.  My studio isn’t as sound-proofed as I would like.  I’d like to move the whole thing into a walled off area in the garage which is a three car but it’s a big job and with what’s going on, I’m not sure it’s a good idea.

Cheers,

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Tags:  Brain Tumor , Faith , hope , My Story , recovery