Blogging in B Minor

Hello everyone!  Well, this is the first time I have had the opportunity to post anything but it’s good to be able to put a quick update up here and to thank everyone.  My good friend Glen provided an update on surgery day and I appreciate that. 

One important clarification - Glen had indicated in that update that I had started on the vaccine treatment.  I have NOT started the vaccine treatment.  The first 7-10 days post-op are used to perform a number of processes on the tumor tissue, several of which will determine whether or not this treatment is compatable with my body chemistry.  I should have info on this in the following days so more to come on that as we move forward.

I wanted to check in and thank everyone for your support and prayers during this time.  They have meant everything.  There was a lot of uncertainty going into this - and obviously still is, but your prayers and support, prayers through my church and other churches, chains, etc - have once again resulted in more than we could have imagined.  In spite of the tumor now being a Glioblastoma Multiforme based on pathology, which was all but guaranteed going into it, everyone including the rehab staff, neurosurgical team and others involved are suprised at my recovery. Although I don’t have any function in my left toes, arching my left foot, side to side left ankle movement and other lower left leg functions, I have a prosthetic type of device that fits around my foot and ankle that is designed to provide strength and lift in that area.  This device with the some developing strength in my quads and left-side torso haved allowed me to take 20-40 semi-assisted paces using a cane.  I have walked around my room here, shifting weight on to the weak side (left) doing normal tasks such as hanging up clothes, closing blinds, brushing teeth, so I can strengthen what I now know I have.

For a guy who didn’t think he would be walking at all after the surgery I’ll take it!  Not sure I’ll be sprinting down the street.  My goals won’t have anything to do the physical.  They will have everything to do with how this unanticipated gift can be used in my relationship with my wife and children

Bottom line?

• I WILL walk - no doubt about this.
• We resected all  of the tumor that could be seen on the pre-op MRI.  With regard to a GBM, you could consider this a > 98% resection although you can never “get it all” with a grade 3 or 4 glioma
• I have the use of my hands.  I can play piano, write, type.  Amazing.
• I now have a vaccine treatment that I will be able to access - a full resection was a prerequisite.
• I have been blessed with the use of an Acute Physical Rehab Facility - the staff and facility are top notch.
• PEOPLE are amazing.  Without the body of the Church, I don’t know where Rachael, Aidan, Keegan and I would be.  Certainly not here.

Here is the planning board in my room to track my daily schedule, post verses that inspire me, etc.  Thought I’d post it here just to share my environment with you a bit.  Pretty interesting - a lot of people have asked me what the verses mean…

I am going to start picking my blog up more but it will be slow coming.  Thank you again.  I look to the future with excitement, one step at a time as I enjoy what’s really important. 

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Tags:  Brain Surgery , Brain Tumor , brain tumor vaccine , craniotomy , glioblastoma multiforme , grade 4 , My Story , personal , prayer , Surgery

You guys are great!!  I can’t tell you how touched we are with your overwhelming support.  I have received so many emails from friends, blog readers, other brain tumor survivors and people who are just believers and want to let me and my family know that they have faith and hope in our future and this surgery.  How amazing people are. 

I have a group of friends from my childhood, guys that I have literally known since I was 3-4 years old and we have stayed in touch over the years.  All of them are behind me.  People in the Church.  A friend of mine, Jake Larson, who is the Senior Pastor at Arcade Church here in Sacramento - wrote such a nice piece on their site about my trial and asked the church to pray about this.  We have friends that are offering up meals, assistance - it is amazing and we are truly grateful to everyone.   Just a prayer is great, really.

 As of now, I’m done with work.  Yesterday in my office I had a very intense focal seizure.  My left leg was involved and it got really out of hand.  A co-worker, who happens to be a great friend of mine for many years was in the office and I called him in.  I took a few Ativan and did some deep breathing and after 10 or so minutes I got myself out but I was oh so close to dialing 911.  I could not have walked out of that place myself.  I was close to the seizure I had after my 2007 surgery.

So, the impact?  I am weak in my left leg - have a bit of a limp is all.  Well, we’ll take care of that on Wednesday!  One way or the other.  If it’s all worse, then I’ll rehab it back.

So, I’m just going to hang at home, spend some time with some friends having coffee, lunch.  My family is in town this weekend and I’ll basically just rest up for the surgery.

Thank you again for all of your support.  It all means more than you know…

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Tags:  Brain Surgery , Brain Tumor , Church , GBM , glioblastoma multiforme , My Story , prayer , seizure

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