Blogging in B Minor

Finally a date.  I think we are nearing the end of the vaccine chronicles….

After all of the saga with the vaccine, I have at least a date for the leukapheresis process that is the direct pre-cursor to having the vaccine.  January 8th – next week.  Of course, in keeping with our story, I still have to squeeze the time and location out of of these folks but these are minor details at this point, right?  Once this little 4 hour blood-filtering process is completed (it’s kind of like running your blood through a strainer and what’s left are dendric cells), the cells are sent to the lab, combined with the tumor tissue that they so desparately needed via overnight courier a day after my surgery on October 15th (quick math = that’s about 10 weeks ago) and voilà, I have a cutting edge, experimental phase 1/2 vaccine in my hands.  Anyone picture that scene from Dr. Jekyl and Mr. Hyde in the lab with smoke emanating from test tubes??  Sometimes this world feels a little like that.  It’s certainly not some potion but these are uncharted waters to a large extent.  For the same reason, it serves as a key opportunity

The plan: 

• Today, 12/30 I have another Avastin infusion assuming my blood work from yesterday all comes back fine – I’m assuming it will be fine.
• On Saturday, 1/3/09, I have an MRI downtown which is in advance of the leukapheresis and manufacturing of the vaccine.  This is a regularly scheduled MRI anyway but we also need to see if a) the Avastin is effective and b) if any growth has taken place.
• On Tuesday, January 8th, I will have the leukapheresis carried out.  By the way, you know how acronyms plague every industry and subsequently (and quite innocently) seep out during discussions with customers and in this case patients?  I was talking with the doctor handling this and she said “well, after you’ve been “pheresed….”.  I said “what?!”  What does that mean – what are you doing to me?!  I was of course joking but doesn’t that sound odd?  It sounds like they’re going to do something quite unpleasant to you. 
• The cells taken from my body after I’ve been “pheresed” will be sent to the lab and I will have the vaccine about a week later, ending the saga 11 weeks or so after my surgery. 
• DECISION POINT:  Here is the big decision
  • if Avastin is really effective, it’s easy – don’t fix what isn’t broken and use cryogenics to freeze the vaccine for potention later use.  Keep going and perhaps add a chemo agent – my neuro-oncologist has brought up a few that I’ve mentioned in previous posts. 
  • If Avastin is just keeping things managed, this is the most difficult decision.  Do you roll the dice?  I suppose you are in the same position as you are after surgery so we go with the vaccine.  We’ll know.  God will guide us.
  • If Avastin has failed, the vaccine is out and so is Avastin.  So we again freeze the vaccine and look for another treatment option.

A lot to go through here in the short term but we have a lot of experience in making these decisions and God is with us.  The decisions just become more significant and more difficult as we move down this road.

The last item I thought I’d cover was my son Aidan and something he said that I thought was amazing.  He spends the day with his Mom when he gets out of school, etc. so I always put him to bed and it’s a good way for the two of us to have some quality time.  We usually read a story and then he always asks “can we talk?”  Of course we can I reply and he always smiles and says “ok, what do you want to talk about?”.  We come up with a topic and talk it out.  Last night we were talking and I asked him, “Aidan, if you could anything in the world you wanted to, what would you do?  And I mean anything – what would it be??”  He asked “anything???” and I said “yes”.  Aidan thought for a minute and then said “I would ask Jesus into my heart.” I said “Aidan, that’s great but I know you’ve already done that so think of all of the other things and try something else because Jesus is already in your heart” and Aidan thought for a minute then said “I would just choose that again because it makes me feel joy and I would want to feel the joy over again.”  Then he said “What would you do Dad?” 

He’s a lot wiser than I am and far beyond his years at only the age of 6.

Subscribe by Email RSS Subscription

It has been a few days since I’ve updated the blog here and for good reason!  We have had so much going on in terms appointments.  I guess when you have about 6 doctors, add a few more and sprinkle in some physical therapy, a seizure and some DMV red tape life can get busy!  But we are good in spite of this.  I must admit I have been up and down since my last post emotionally.  It’s hard to fully accept this diagnosis.  Jumping from a grade 3 to a grade 4 is a big deal and the enormity of the situation coupled with the pace of treatment options needing evaluation can become a blur.  All of this aside, the diagnosis is bleak but this is why we have a very talented team in place headed by my Neurosurgeon, Dr. Edie Zusman, who has performed both of my craniotomies.  Thanks to her, I am walking with a cane and can walk fairly well without it now!  Physical therapy is helping tremendously.  And, we know that God is in the middle of all of this.

By the way, the Sacramento Bee ran a terrific story on Dr. Zusman in this last Sunday’s paper.  The gist is she’s the only female member of the Amercian Board of Neurosurgery and is ranked in the top 37 best neurosurgeons in the country.  Pretty comforting and if you read this story and what she went through as a woman dealing with a sexist, sometimes discrimantory and very male-dominated environment, she has accomplished much more than what she does in the operating room.  I’m proud to have her as my neurosurgeon.

So I digress.  I have been up and down but mostly up.  With regard to my condition and what’s been happening:

DCVax-Brain Vaccine

The vaccine is being manufactured.  Such a blase’  term for something so important but nonetheless it should be ready shortly.  The “red tape” we are working through is some last minute FDA paperwork.  There was a lot of FDA paperwork up front and approval from the Neuroscience Hospital Board.  With that behind us, they has to approve my use of this which is a formality really.  So, I should be able to get and see the Neuro Oncologist who will be performing the infusions either the end of this week or the beginning of next.  There is no sense in seeing him until the FDA paperwork is finished. 

UCSF Trip

We went to the UCSF Brain Tumor Center on Friday of last week.  This was marginally helpful at best.  UCSF doesn’t push vaccine therapy and based on this meeting doesn’t even believe in it.  Therefore, they discounted the entire approach and basically told me that they don’t  believe it will be helpful to me at all.  The Neuro-Oncologist basically wished me luck but said once you do this you’re cutting yourself off from a lot of other options.  This is a very true statement with any trial you decide to enroll in because with most trials, you have to have not been treated before – otherwise, how are they to tell whether or not their drug is working and / or whether or not the previous treatment has hindered the trial drug?  However, this world is also full of politics.  A goal is to get patients enrolled in trials.  Well, it turned out to be a single trial that he could offer.  He had one.  A new one.  No data, no information about survival rates – nothing.  When I told him about UCLA/Cedars Sinai using the same vaccine I was planning to use, and Dr. Black’s program down there which uses the DCVax vaccine whic does have available data, the neuro-oncologist really touted his own trial.  He also indicated that tumor was left behind.  About 10%. Not true.  Sutter’s Neuro-Radiologists confirm this is post-op changes – meaning scar tissue, swelling, etc.  Interesting.

Well, that said it all and he suggested we spend 1/2 hour with his nurses acquainting us with the trial.  He sent us to another room.  When the nurses arrived we asked for paperwork to read up on it and decided to depart.  We are not discrediting UCSF at all.  This is a wondeful institution.  They have some of the best neurosurgeons, neuro-oncologists, etc. in the world but this just wasn’t a fit for us.  That was about it.  So, we came back home and ruled that out.  We really were more interested in a backup plan anyway so we’ll put that together and it may or may not include UCSF.  We’ll just have to see.

Other Updates

On Saturday morning I had a pretty bad seizure.  As usual, I didn’t lose conciousness but it was pretty scary.  My left shoulder and arm were involved instead of my leg which was odd.  I took a few ativan with Rachael’s help and that did the trick.  It last about 5 mins but it was a bit ugly.  Oh well – it’s part of the territory.  The tumor removed was about 2cm x 3cm so that’s bound to result in this activity.  My concern moving forward is once these neural pathways are opened up by having a seizure, it’s easier for your brain to “find it’s way” so-to-speak to another one.  However, I’m comforted in knowing that after my first surgery in 2007, I had one serious seizure and then nothing. 

The DMV is pushing for a “reexamination” of my driving.  This is pretty standard for what they refer to as a “brain injury”.  So I had to fill out paperwork and my Neurologist does as well.  Again, it’s just red tape.  You’d think they just ask about the surgery, my deficits as a result, etc but I guess this allows them to open the door on everything!  All diseases, issues, etc.  Funny.  Are you an alcoholic?  Do you have heart disease?  Issues that have nothing to do with my brain surgery.  Well, ok.  The worst case is I take a driving test but my concern is the time it will take because let’s face it, our government operates like an old rusty Chevy El Camino that’s been rotting in a junk yard for 30 years.  Slooooow.

My company is the greatest organization.  My wife told me today that they called and want to bring us a “Thanksgiving Feast”.  Basically you can get these complete meals for so many people and everything is cooked and ready to go – turkey, stuffing, cranberry sauce – you name it.  I am so blessed to work for a company that is just so caring and supportive.  Both times I have had to go on leave our CFO, whom I report to, has told me just to focus on what I need to do and my family and that they will make sure that Rachael, Keegan and Aidan are taken care of.  How wonderful and what a blessing it is.  Words aren’t even enough to describe how much this means to Rachael and I.

Aidan and Keegan are doing good.  Aidan got his very first trophy last week for soccer!  He put it right next to his bed on his bookcase so he could look at it as he wesnt to sleep.  He’s had 6 goals this season and is thrilled  The last soccer game is Saturday.  That’s where I was heading last Saturday when my little problem cropped up! 

Anyway, that is about it for now.  This week and next should once again be busy.  Hopefully one of the appointments will be to get started with the vaccine so we will be praying about that.

Subscribe by Email RSS Subscription

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,

Subscribe by Email RSS Subscription

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, 

Subscribe by Email RSS Subscription

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

Subscribe by Email RSS Subscription