Blogging in B Minor

I should hear back from my Neurosurgeon and Neuro-Oncologist today.  I left a message with both.  I thought more about the seizures and I think that because I’m becoming more symptomatic pretty quickly (3 focal seizures in a week), waiting until the end of May for an MRI is a little too long for my comfort level and perhaps we should do one now.  This is obviously an aggressive tumor and in spite of the fact we folded in gamma knife in March and may assume this took care of growth at that time, the fact is we don’t know whether the seizures are being brought on by growth, brain swelling, damage to the motor strip from the gamma knife process (not surprising if so), etc.  I think we need to do it though.  With the recurrence that happened 4 months after my resection in October and “most” recurrences after the first becoming sooner and sooner in elapsed time, I want to stay totally on top of this.   

I’ve been thinking over the last few days about how the so-called “economic down-turn” (which is government speak for recession) has brought some families closer together and taken us back to some core values.  I know for us, it’s built on what naturally happens when fighting a brain tumor and what existed before. 

Most families come together after the diagnosis and are more judicious about how, where and with whom they spend their time.  I think coupling that with the economy is creating more closeness – or it creates the opportunity.  More people are spending time at home – not eating out as much or shopping.  I don’t think there is anyone I know who hasn’t made some type of change to their financial matters.  We refinanced our home.  We found a better deal on cable TV.  But this tightening of the belt as it were is something that can be a positive.  It’s the media that creates so much fear and hysteria about things.  Yes, everyone has to be careful right now and some are in very hard times – and I pray daily about the problem but God will prevail.  In the media, however, the world is going end, right?  The same message was sent a few weeks ago with the swine flu – pandemic!  Remember SARs?  Who can forget the bird flu – the list goes on.   I’m not suggesting at all that these didn’t  effect anyone – they did and it was awful – just like brain tumors and other diseases they are of earthly creation.  The point is the media drives fear and panic.

I find that us the most difficult issue is when I’m not feeling great – it puts a lot of pressure on Rachael and she feels the burden of the evening or weekend day upon her.  Lately I’ve felt pretty good with the exception of the seizures which can put me out of condition for awhile.  I think it’s hard to support each other sometimes when two people are in survival mode at certain times.  We honestly struggle with this.  But, on the other side of the coin (the shiny side!), I’ve been outside with my kids in our backyard playing catch with my older son.  I’ve been able to play with our youngest and I’ve been spending a lot of time with Aidan at night reading books and just talking.

On a funny note, the other night Aidan needed to get out of the bath.  He had his hair and shoulders so lathered up it looked like shaving cream!  But nowhere else – just on his head and shoulders.  Rach asked, “Aidan, why do you have so much so soap in your hair and on your shoulders?”.  Aidan said “Well, the bottle over there says Head AND Shoulders so I want to make sure I do it right.”  Kids can make you laugh – you just can’t do it in front of them sometimes.

Random post.  Don’t forget Mother’s Day on Sunday!!

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I think the effects of the Gamma Knife surgery are really beginning to come to the surface now.  You might recall from the past (review for regular readers) that my brain tumor is right on the motor strip in the right frontal lobe.  Therefore, the targeted area involved the motor strip and seizures was one of the likely effects of this type of procedure.  My surgeon told me that they would likely become more frequent and increase in frequency.  When you think about it, I received 60Gy (Gy is pronounced “grey” which is the unit of measurement for radiation) of IMRT radiation over 5 weeks.  Gamma knife was about 24Gy in one shot.  It’s not difficult to understand how this might create some trauma.

I’ve had focal seizures (seizures confined to the left side of my body – typically in my left shoulder and arm) here and there but there seems to be some regularity developing in spite of increasing meds and folding in a new drug.  I’ve only been on the new drug for a little while so I need to give that time but the only way to describe the feeling in my left arm is it feels like there is a seizure right under the surface that could break through at any time.

I’ve had seizures on 4/28, 5/1 and 5/4.  Yesterday was laughable!  We are refinancing our 1st mortgage – hey if you haven’t do it.  It’s a good time!  Anyway, we were getting some final paperwork notarized and sent out in a fedex store and just as everything was laid out, I felt it coming on.  Perfect timing!  We needed to get this stuff out but what am I supposed to do?  I told Rach that I need to take a quick walk.  So I walked down the strip mall where it looked nice and quiet so I could go finish my seizure and return to sign the paperwork!  How lame is that?!  Luckily it was a normal 5 minute deal and Rach had all the signature lines all organized for me.  I was also glad that my oldest son didn’t follow out – he hasn’t seen that side of this and I’d still like to keep it that way.

I need to find out another answer here.  I’ll keep tracking it with log.  I haven’t had to log these since my 1st surgery really but this is when logging is important.  You simply can’t remember details like when it occured, the duration, if you took medication to stop it and any other info you need to document that may be important.

Other than this issue, I’m still feeling good – plenty of energy.  Something is working but I’m concerned mostly about brain swelling and want to avoid steroids which is where they would go if we can’t control it with standard anti-convulsants.  I’ll get it figured out though.

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Things are moving fast but I received confirmation that my vaccine (DCVax-Brain) has been delivered to the infusion center at Sutter where I will have my vaccine treatments performed.  Can you believe it?!   I’d ask for a picture if I could but I trust them! 

5 months post-op I have the vaccine so now we’ll implement this treatment tomorrow afternoon and see how I do.  Now I can be excited!  I also had an MRI yesterday – I’ll review results tomorrow afternoon.

Everything happens in God’s time, not our time.  In spite of having a recurrence while waiting, I still have faith in God’s plan.  I believe I was supposed to have Gamma Knife and this (receiving the vaccine this late) was to come on the heels of that, for whatever reason I don’t know.  I may never know just like we may never know many details of what my family has been facing over the past few years.  But, as long as we trust in God, pray for His will, not our will, we will continue to be ok and not live in fear.

There as a great speaker at church a few weeks ago and he really got through to me.  The theme was “Living in Fear”.  He mentioned that there are 365 references in the bible related to expelling fear.   What struck me is that this man’s father died when he was just 4 years old – of cancer.  He said that in spite of his home being a Christian home and his Father being a Christian man, he had a difficult time letting anyone close to him for a long time because he didn’t want to get hurt again – he expected the worst.  Afterall, your dad as a boy is the center of your universe and then he’s gone. 

I had a chance to speak with him after the service and he gave me some great advice moving forward because my sons will be in the same place as he was when he was one day.  Too much to go into but the conversation was very helpful.

For him, and I couldn’t agree more – it boils down to faith and what God wants for us:

2 Timothy 1:7

For God has not given us a spirit of fear but of power and of life and of a sound mind

He doesn’t want us to live in fear of anything.  He wants us to face life.  If we have cancer, a brain tumor, a year to live – He wants us to trust in HIS plan, not muddle it up with our own version of a plan.  So it’s about praying for His will and realizing that fear is a waste of time – everything will happen and work out the way it’s supposed to.  We’ll get some important cues on the way – so I have to be attentive and not miss those but He’s driving.

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Quick Post – I have a lot going this week.  We haven’t heard anything different – so the vaccine should be here tomorrow. 

• Updated – MRI done today at 2pm.  We are going to set up an MRI as soon as possible – could be today or tomorrow.  The MRI is used as a baseline of course prior to starting the vaccine. 
• I will likely start the vaccine on Thursday.  This will be administered at the infusion center here at Sutter.
• Our plan is to use the vaccine concurrently with Thalidomide (yes, the same “morning sickness” drug from the 70’s).  More recently, however, Thalidomide has proven to be a solid treatment for GBMs – it cuts off the blood supply to the tumor. 
• I also have an appointment with my Oncologist through all of this to see where we are with the plan.
• I have been taking Valcyte as well.  Still debating if that is in the mix.  We may take that out so we can understand the efficacy of this treatment combo.

A lot going.  Will post what I can here.

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As I wrote earlier, I had a seizure on Saturday, March 14th.  My doctors indicated it was likely a coincidence.  I wasn’t so sure but I received sound advice from Sutter, as always, that I should discuss my medication levels with my Neurologist because she was concerned – my seizures will likely increase as I move forward in time.  I called on Monday and have an appointment this next Monday.

In all of the hoopla regarding the vaccine, I didn’t mention that I had another seizure on Tuesday – about the same severity.  This one was at work – but at least I was in my office and not attending a meeting.  Of course I’m concerned about this occurring and I’m concerned about not being able to work because of this.  It’s frustrating.  I got through it though and went home and was able to reach my Neurologist and we came up with a plan to increase Keppra incrementally over several days.  So far that is holding.  Seizure control is a fine balance and not an exact science as I have learned first-hand from my Neurologist.  He is very good at what he does, as is everyone that has been treating me.  I have truly been blessed.  I am taking three different meds to control this and he adjusted all of them up/down at some point during my treatment.

We knew this would happen but not this soon.  I haven’t spoken to my Neurosurgeon but I am curious whether she still thinks this is coincidental or not – I haven’t had seizures like this until now – post Gamma Knife.  So, we’ll see.  For now, things are ok!  It’s really just part of the process here.  I have been told they will increase but we will be praying that they don’t.  I feel comfortable that we have been proactive to deal with it at the advice of my Neurosurgeon and if I do have issues, there will be more adjustments.

On the treatment front, my Neuro-Oncologist is really in a waiting pattern with treatments such as Avastin purely due to the Gamma Knife surgery.  Anyone has to wait 4 weeks to allow healing before resuming chemo or chemo-like treatment.  So I’m doing the best I can.  Yesterday was a good day – I had some good strength after work and threw the ball around with Aidan in the backyard which was great and then made a cardboard butterfly with his photo on it that he then decorated for school.  It was good for us.

More to come

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More on the DVax-Brain vaccine saga in a moment, but put shortly my slot is set to start in the first week of January which for a Glioblastoma Multiforme patient is an eternity from my surgery date of 10/15/08.  Therefore, I can’t stand around for that long and leave this untreated for that long.  There are people with GBMs that die in 3 months if they don’t treat these tumors quickly!  We had to wait 4 weeks which is standard but we are coming up on 8 weeks past that period.

So, I have started using Avastin and had my first infusion on Tuesday and I will receive an infusion every 2 weeks.  It’s an IV-based therapy that was first approved in 2004 for metastic cancers (cancers that have spread to other parts of the body).  Colon cancer and non-small cell lung cancer were the first followed by breast cancer in 2008.

Avastin has shown to be very effective in treating GBMs.  Put simply, it works by inhibiting tumor growth by blocking the formation of new blood vessels (angiogenesis) and was the first clinically available angiogenesis inhibitor in the United States.

Updated:  Here is a great article that ran in the Wall Street Journal about Avastin. The same article appeared on Virtual Trials as an embedded article on their site.  What is amazing is that last night I received an email from the editor of the Wall Street Journal health blog telling me to take down the article as an embedded article, that I am reproducing their site in my site and it’s not allowed.  Placing a link is fine but putting the site in an iframe, in spite of the fact that all of their advertisement, links and authorship credits (i.e. I’m not stealing anything) and anything else they place on the site are all in tact is not OK with them.  This is all going on while VirtualTrials.com has conducted the same practice via the link above since 11/5/08.  I posted this yesterday and received an email the same day asking that I pull it down.  Such is the ins and outs of the legal world but it was very surprising – I’m a fairly small concern here!

Here are links to both articles on the Wall Street Journal site:

Genetech Seeks FDA Nod For Avastin For Brain Cancer

Targeted Drugs Take a Crack At Brain Cancer

My insurance company has been terrific.  I have not received a single denial of coverage.  Avastin is $10K+ per infusion and I will receive one every 2 weeks.  Since the first infusion on Wednesday, I have had ZERO side effects which is great.  I went back to work on Tuesday as you know and had a normal day on Thursday and Friday so I’m thrilled.

When the vaccine is available, we can take advantage or if I am really responding well to Avastin, we can add another agent on top of Avastin and use cryogenics to preserve the vaccine and implement later.  The issue with the vaccine (the current issue – new issue, whatever you want to call it) is we didn’t know we needed a “slot” with the lab.  Apparently we do which, as I said, is January.  It’s really turned into a learn/become informed as we go situation which is unfortunate when your life is on the line.  So, we have to go on to other solutions for now.

That’s it for now.  We celebrate Christmas so the tree is in our house.  Our good friend Tom and his wife came by and he was kind enough to climb the pull-down attic ladder and retrieve our bins of decorations so we should have everything up pretty soon!  The Holidays will be great and we are really looking forward to them.

More soon…

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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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Update:  My surgery has been pushed to next Wednesday, October 15th.  There is one and only one reason for this.  We are seeking a cutting edge vaccine treatment that is formulated based on the brain tumor once it is removed.    The team is working hard to determine the best vaccine that we should administer and I’m performing my own independent research.  We will hold a meeting tomorrow after to discuss everything.  Having the additional week to locate this and strive for the most remarkable outcome is worth any additional growth that I may occur.

One such vaccine, CDX-110 sounds very promising.  In several studies, it has doubled survival rates.  You can read about the vaccine at the Duke web site which is one of the brain tumor centers we are in contact with. 

Another update is in our meeting with the Neurological team on Friday afternoon, my own view when I looked at the MRI scans were confirmed, this is grade tumor so we have to go for a total resection in this surgery.  Obviously there are risks here with regard to motor skills on my left side (mostly concering my left leg) but it’s something that it not debatable.  It’s really more of a mandate.  And, the surgery is step 1, followed by vaccine treatment and another treatment such as Accutane.  The good news is treatment side effects are nil.  This is not like going through radiation and chemo after surgery.  I may have to rehab my leg/arm which is fine.  Working 4 hours a day to regain strength – fine.

So, that is where we stand.  Preop appt today, touch base with Neuro-oncologist tomorrow and then we’ll go form there.   That’s it for now….

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