Blogging in B Minor

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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Rachael and I had a meeting with the staff and case manager today at the acute rehab center and the concensus was to move up my discharge date to today.  Surprise!  So, today at 2pm Rachael and I gathered everything up, said goodbyes to some great people I met and we left for home.  Amazingly, through the grace of God, I met my goal having walked a minimum of 200 paces on my own using a cane. 

For us, this is both a blessing as well as an amazing testimony as how God can work in our family when we pour our entire life, soul and heart into His plan.  As hard as it was to remain completely focused on “His plan” throughout, we were particularly fococused in on two verses – Hebrews 11:1 and James 1:12.   I know Rachael had additional areas she focused but for me this was the pure and simple focus:

Hebrews 11:1  “Now faith is the substance of things hoped for, the evidence of things not seen.”

James 1:12  “Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.”

Many of you know that Hebrews 11:1 goes all the way back to my CD, River of Faith.  We prayed specifically about my left leg – that some function would remain.  Before I went into surgery, I made sure my prayer was clear throughout surgery:

I can’t tell you how I feel today.  I feel encouraged.  Some might say that I don’t have a reason to be grateful.  After all, I have a grade 4 tumor, the prognosis is terrible, etc.  Again, I go back to James 1:12.  Patience – stay in today, have faith.  God didn’t do this to me.  This is an earthly issue – my body has turned on itself but God is doing everything in His power to help me and us.  It’s a matter of perseverence, patience and faith.

More later…glad to be at home and I will be SO happy to sleep in my own bed!

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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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Mark’s surgery was scheduled for today at 8:30am. Following the surgery, I spoke with his brother who informed me that Mark’s surgey was successful. The doctors were able to achieve a resection and removed everything they had hoped for. They are waiting to determine if there will be any deficits to his left side but he was able to move his left arm without any difficulties. Mark is in recovery and all his vitals are good. He is stable, doing well and joking with the medical staff. 

Once Mark has been cleared, he will move to another facility where he will begin his rehabilitation. If Mark has access to any kind of computer, I’m sure he would enjoy providing further updates on his condition and his progress. If not, I will be glad to provide those updates for Mark until he is able to do so himself.

Thank you for your prayers and support

Updated by Glen Evans

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I spoke to my Neurosurgeon’s office and it looks like the vaccine treatment is coming through!!  The collection kit is being sent overnight via FedEx from the biolab to my neurosurgeon today with all of the details and the initial collection process payment has been made  There will be a small payment out of pocket for us to perform the cell separation process that is necessary to begin the vaccine development and the other costs will be nil!!

Talk about God working some huge miracles.  Again, there is that small chance, very small, that something could go wrong but this is all but locked in so I can’t thank all of you enough for your prayers with regard to this.  The only way to get ahead in this game is to look at the new emerging treatments and this is one – and seems to be the most successful.  UCLA has had significant success with this vaccine in their trials and Dr. Zusman, through a lot of hard work and hours, has been able to bring this treatment here for me.  I will be the first patient at the institute here in Sacramento to receive it and I feel very blessed.  I just can’t say anything more than that.  IF for some reason something goes wrong, I am also ready for that and know that is part of the plan.  However, everything I’ve seen indicates this is done and nothing to worry about now.

 Things are good.  Trying to relax, listen to music.  We have a prayer tonight here at home with a number of pastors, friends and family.  Other than that, some other family flying in and tomorrow will be a nice quiet day and a quiet night.

Updates on surgery will be posted here as they can be…

Cheers,

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Update

I continue to become more symptomatic which is actually good believe it or not! I had a focal seizure yesterday afternoon and although not as long as the seizure on Thursday, it was fairly intense.  I was able to work myself out of this in 5 mins and used an Ativan to bring it down.  The reason, however, it’s helpful is it’s confirming the brain mapping we have performed.  The seizures have been confined to my left leg and have not extended up into my upper body.  The tumor growth and area that has been mapped via fMRI and brain lab imaging indicates that it’s right on top of the area of the motor cortex that controls that very function – left leg.  So, it’s actually easier for the neurosurgical team and as a patient to know that we are going into a surgery a) solving a problem that has started and isn’t going away and b) having solid, symptomatic confirmation of the mapping. 

On to other news….I was up early today – no particular reason, I haven’t been worried about anything.  I think the Ativan just made me sleep a lot yesterday so I’ve had enough.

Tumor Vaccines

As for the DCVax vaccine, my team is working so hard on this.  We have some costs on some of this.  Some trials are not exactly “free”.  So far we understand some of the costs but not all.  We also need to understand a little bit more about the research protocol but my neurosurgeon, Dr. Edie Zusman at the Sutter Neuroscience Institute has been amazing in doing everything in her power to maximize my length of life. If you are ever faced with a primary brain tumor, she is who you want in your corner.  She has the fight and tenacity that I need in my situation and her entire team has an arsenal that they are bringing to bear.  She has spent hours of her time so far on this vaccine issue and will be spending a lot time this weekend dealing with it.  Monday will be critical as we will be getting final details.  I can’t say enough about the Neurosurgical team at Sutter though.  They are a brain tumor center and a vast majority have been trained at UCSF, Stanford and other elite institutions.  They have gamma knife, fMRI capabilities and so much that you find at any other top shelf brain tumor center ala Duke, MD Anderson, UCSF, etc.    

That’s it for now.  Today is a nice family day.  Rachael, Aidan, Keegan and I are going out at some point for just a family picnic.  I wanted to play some soccer with Aidan – we’ll see how that goes.  May just push it a bit – who cares.    Bring a kite.  Note sure.  My parents got in last night so we’ll see them today as well.  Tomorrow church and I don’t know after that.  Just going to focus on today…

God bless, 

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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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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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