Blogging in B Minor

This is a great radio interview with Dr. Linda Liau, the creator and chief investigator/neurosurgeon at UCLA regarding DCVax.  Joining her is the chair of the UCLA Department of Neurosurgery at UCLA.  It’s about 20 minutes long but is very interesting, particulary if you are interested at all in immunotherapy.

I again am so blessed to have been given this opportunity and I seem to be responding to this well.  It is hard to tell thus far but my GBM is shrinking.  Here is the interview:

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My last post, regarding the healthcare system, was posted very carefully.  Of course, it was related to politics!  This will always pull some people’s strings.  Case in point  

I received one very long-winded comment from a  gentleman who was obviously very passionate about his position.  In the spirit of maintaining the mission of my site, I’m removing it and keeping the site on a steady course.  A lesson?  Perhaps.  I suppose I should have known.  A total distraction.  It’s a good thing I have a spam filter, otherwise a lot of people could have potentially jumped on it. 

Enough of that.

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As for me, I’m doing pretty well.  My gait is not so well at the moment.  Therefore I’m being fitted next week.  The company that created my first brace is going to do this one – I’m looking to employ a different material – perhaps carbon fiber or something that is strong yet pliable.  Walking a few blocks with the existing brace just isn’t going to work into the future. 

I’m going to start back on Avastin next week.  I only took 2 weeks off and that was to allow for the DCVax injection.  I’m still weighing out the seizure meds – the right combo is there.  Things are good though.  Today is good.  The kids are great – we’ll have some family time this weekend and enjoy it.

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In a word, WOW.  If you’ve been reading my blog for some time, you know that we’ve had our share of not so positve news over the past few years.  We’ve learned to live each day (and are still learning) in the face of this disease.  However, this scan shows that the power of prayer, advances in experimental treatments and the tenacity of researchers, doctors and others in the medical field can yield results.

 I will cut to the chase first.  Here is a shot of what was on the monitor in clinic when we talked. 

From left to right, we have the March 30th scan (2 weeks post Gamma Knife), the May 7th scan and then Monday’s scan, July 20th.  Look at all of the enhancement in the first and second scans.  The second, however, does show some evidence that some cells are dying in the center of the tumor.  Monday’s scan, however, is amazing.  No edema, no mass effect, enhancement has significantly decreased and the profusion portion of the test which I will get to is equally telling.  Needless to say, I’m VERY pleased with this result.  We have not had a report showing a decrease at all since this started – only stable or further enhancement.  What we have done here is hammered this tumor with an army.  There is nothing more satisfying in this setting than to see this tumor get pummeled!

Now for some additional details:

Again, March, May then Monday’s scan.  What a blessing.  This tumor, a grade 4 GBM is dying off at this point in time.  That is the situation TODAY – but see my previous post.  Let’s stay grounded here.

Finally – a test that is very telling is called a Profusion Test.  In basic terms, it shows the blood flow in and out of a tumor.  It looks like a heat map.  High blood flow is shown by yellow/orange and red colors – the closer to red the higher the blood flow.  The more blood flow a tumor receives, the more it can grow.  Tumors depend on high blood flow.  If the blood flow is low or cut off, this can help kill a tumor.  Many chemotherapies for primary brain tumors focus on cutting off the blood supply.    The vaccine as you’ve attacks the malignant cells and kills them.

Check out the profusion image:

The circle on the left side surrounds my GBM.  Take note of the color and the legend on the left.  The profusion test shows DARK blue in the area of the tumor.  Another sign that my treatment is effective.

Finally, I decided this time I would just put the report up here so a) readers could see what an MRI report looks like if you haven’t seen one before and b) it’s easier to lay it out rather than repeat everything.  I just blocked out personal info.  What you should pay attention to is the “Findings” and particularly the “IMPRESSION” portion of the report.

It may be a little hard to read so my apoligies.  In summary this is great.  There is also no evidence of any grade 4 cells moving into any other areas of my brain.  I can’t pray or ask for anything better than this.  And, as always, I’m prepared for whatever comes my way.  It’s about today and I do the best I can to stay here.  I slip up – but TODAY is a good day and I have to thank God for this gift of healing.

 I will be taking 2 weeks off from Avastin.  I have been taking Avastin alone along with Thalamid.  I failed Avastin in the past – it just kept it stable but I had a recurrence in February that led to the vaccine and gamma knife in March.  I also failed Avastin + CPT-11.  Again, stability but no real progress.  I then started vaccine therapy (DCVax).  I believe these results are / can be attributed to DCVax.  I am also going to back off of Thalamid.  It makes me very tired and “loopy”.  It’s a slight risk but the next scan will tells us whether it’s been any factor at all in my treatment.  At the next scan we will have more info.  I had another series of vaccine shots yesterday so I will keep moving on.

I want to thank everyone who is praying.  This blog is my way of giving back and I can’t thank everyone enough for your continued prayers.  I’ve said that before and I hope everyone realizes that by praying for each other and creating a community of survivors, caregivers and friends who have this in common, we can find some sense of peace in sharing our stories.

I continue to urge you to use the comments section of posts to relate your experiences for everyone to see/read.  It’s helpful for everyone.

More to come….

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Real quick but this really illustrates how much we really need to just stay in today.  My own conjecture about the increased frequency of my seizures, including brain swelling, possible growth, etc never include “stability”.  However, that is what the final report says – stable.  Additionally, the edema is reduced. 

This is a victory of sorts!  In spite of the recurrence, the working theory is that cells are dying off and that’s leading to irritation of the tumor and seizures – the gamma knife surgery is a large part of this but so is the vaccine perhaps.

As far as no change on the MRI, we don’t know the reason for the stability but DCVax has to be considered.  Only time will tell because the gamma knife surgery was only several months ago as well and the full effects/results will take more time to reveal themselves. 

I’m going to go on Avastin again to keep hitting it.  This shouldn’t be too bad though.   I’ve had it before.  My biggest fight with Avastin is staying as hydrated as I need to be – you have to drink water/fluids like a fish!

That’s it – Happy Mother’s Day to the mom’s out there….

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I went in for my third vaccination series yesterday.  I obviously can’t say for sure what is helping, but I have more energy than I’ve had in a long time – think I mentioned this.  I’m taking valcyte, thalidomide, the vaccine (DCVax-Brain) and will still be seeing results from the gamma knife (both positive as well as swelling which could result in swelling and certainly explain the seizures).  One thing is for sure – I haven’t felt this good in a long time. 

 I have completed day 0, day 10 and day 20.  My next vaccination is 8 weeks from now on May 27th.  The schedule wasn’t laid out for me very clearly at first but this is when it starts spreading out.  I will be having an MRI here in the next 3 weeks or so and I should have some good information at that point because the aftermath of the gamma knife surgery will have cleared up much moreso than when we had the last MRI.  Interpreting the images will be much easier.

It is so great to be in a routine for now.  There was so much up in the air.  So, this side is ok but now I have to tackle the seizure issue and talk strategy with my Neurologist.  I’m about maxed on the Keppra so we may need to look elsewhere.  I have two other meds that also control this so perhaps another combo is in order.  It’s somewhat of a constant job staying on everything but if I do these things and pay attention to everything – and act on what I need to do – I can ensure that the time I have with my kids and family can be fulfilling.

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The Sacramento Bee article came out today and I was surprised to see it was on the front page – “Cancer vaccine offers hope to family”.  The writer asked me my perspective on what I hoped that this article would achieve and I said a) exposure in the form of hope for brain tumor patients, that they would see that other emerging treatments were becoming available all the time that were showing promising results and b) communicating to brain tumor patients, family members and others touched by this disease that they aren’t alone.  There are others going through this.  Finally, I wanted the Sutter Neuroscience Institute and my medical team to receive as much recognition as possible because they have stood by me and fought every step of the way.

Well, the front page certainly provides that exposure.  I have placed a few thumbnails below to larger blowups of the front page and the second page back on A7.  You can read the entire article online at the Sacramento Bee’s Web Site.

I don’t have much time now but will write more later.  At my next series of shots on the 21st, KCRA, the NBC affiliate here in Sacramento will be there.  I think it’s great this is receiving so much press coverage.

Image Below:  How DCVax Works

Sources:  Northwest Biotherapeutics, The Human Body Atlas, Molecular Cell Biology, McClathy Tribune (Robert Dorrell – rdorrell@sacbee.com)

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Today I will receive my second DCVax treatment – everything is moving forward according to plan!  I’m very obviously very happy about that.  I meet with my Neuro-Oncologist in about an hour and we’ll cover my labs from this morning and then I’ll have the treatment.  My labs from Monday were great.  My ANC (absolute neutrophil count) has been great – my white cell count has been higher than it has since I’ve been on treatment so everything looks good there.

I did have a seizure on Wednesday here at work.  I was in a small meeting with just my management team so that was good.  I’ve coached all of them on how to handle that – they really didn’t need to do anything other than “take a break”!  I took an ativan, did my breathing to relax and in about 5 minutes it was gone.  This is all the Gamma Knife.  So, this is about 5 since that procedure.  This was confined to my left shoulder again but that results in my left arm being involved.  I just got a ride home and then slept.  I find when I push myself I’m more susceptible.  I”m still working just 5-7 hours depending on the day.  I increased my meds based on previous discussions with my Neurologist and will continue to if anything else happens.  None of this is unexpected though and the positive here is that I have a good 30 second or so warning.  I know when it’s coming so when I drive I’m either in the right lane or the far left – and it’s my left side so even if my left leg became involved, which it hasn’t, I feel pretty safe driving.

I put up a new area in the blog that contains life pictures.  You can find it under the photos tab.   I have put pictures from pretty much my entire life – childhood, growing up, Rachael and I, my children, etc.  I wanted to have a place where we could go and see all the fun times we have had and continue to have as I add to it.  Also, I want people to know that just because you have a brain tumor you can still have fun.  Don’t get me wrong, there are days when I am irritable and not in a great place (or let things get to me a bit) but there are also days when I am in the backyard, playing soccer with my son (I just can’t kick the ball with my left foot!) or trying to beat him in a game of horse.  We still enjoy life.  We’ve had some good getaways.  Rachael and I are going to getaway for our wedding anniversary too.  We are going to…..Sacramento!!!!  Woo Hoo!  We didn’t want anything other than a few days alone so we are staying local in a nice hotel, going out for a few dinners and will just enjoy time away by ourselves.

The Sacramento Bee writer and photograher were over to our house on Wednesday night to talk with Rachael to finish up the piece that will likely run in this weekends paper.  I wrote about this several posts ago so you can read that if you haven’t to know what it’s about it.  I will also post a link to the online version of the article once I know when it’s published.  It could slip into next week too – not even sure.

 That’s it for now.  Have to run.

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I mentioned I would post some pictures of the canister that is used to ship the DCVax-Brain vaccine and as promised, here they are.  I’m placing one here inline with the copy but the rest are going to posted as thumbnails.  Just click on a thumbnail and the full size picture will load in the same window.  Just hit the back button to go back to the post.

There were a lot of people curious about this.  It had been sitting around for a day and the canister couldn’t be opened until the injection was to be given.  I’m sure a lot of people were curious.  Look at that thing!  The SacBee writer and photographer when with the team to watch as it was opened up and you’ll see in the pictures how intricate of a process it was.

It really is great though – to have my medical team so behind me, so excited about the treatment – as am I of course.  And to have the local coverage here.  I think this is just God’s way of not only giving me potentially the opportunity of adding time to my life but also, as I have said, providing anyone you reading this or those that are exposed to any press coverage a sense of hope and direction.  I’ve hit many brick walls.  I have been at the height of frustration at times in my treatment.  Failing Temodar (after 8 months) after having 5 weeks of radiation and concurrent chemo.  A transformation from grade 3 to 4.  Failing CPT-11.  2 surgeries.  It hasn’t been easy and I know a lot of you have been through similar battles.  But research continues.  There is hope and we have to have faith – look for the solution, not be mired in the problem.  Sometimes I don’t do this so well but if I can stay in today, I can do it pretty well.

I don’t have too much else to say.  I didn’t have any allergic reactions.  I started Thalidomide last night and I feel fine today.  We’ll see how that goes.  Here are the pictures!

1. The cannister
2. My Neuro-Oncologist, Dr. Nora Wu, who was really the one who pushed so hard to make this a reality.  I have to thank Dr. Edie Zusman, my Neurosurgeon for her hard work in getting this started but Dr. Wu (pictured) performed so much heavy-lifting.  If it weren’t for her, this would not have become a reality.  Also, my case manager, Diane Nunes, RN, CCN was so instrumental.  I think hundreds of emails flew around about this over the course of making this happen and she was in the middle much of the time!
3. Disassembling the canister #1
4. Disassembling the canister #2
5. Disassembling the canister #3
6. This is the inner tube that contained the syringes holding the vaccine.  They needed to be thawed for 30 mins prior to the injections.
7. Doctors preparing the vaccine for injection

I have the next injections a week from today.  I’ll have an MRI in about 30 days.  I think it will take 60 days at least to get a feel for this, maybe longer.

Good stuff!

Interesting Update - 4/6/09 – This post has been pounded by traffic over the past day or so.  Put it this way, I haven’t had a post on this blog receive this much traffic in one day since the blog became active.  There is a large percentage of traffic coming from Yahoo! Finance and Silicon Investor.  I think there are many interested in this very promising treatment from many different segments of the population.  For me, we’re praying that it can add time to my life so I can spend time w/my family.  My career is important – we have to pay the bills, but in the end, what really matters??  We could lose everything and as long as I have my wife and 2 children with me, THAT is what matters.  Therefore, NWBio’s vaccine, that they have provided me with, is something that gives us hope and we are grateful for that.  Perhaps this will push my life out far enough for more advances in brain tumor treatment to emerge.

For me, it’s about family really.  I got home today and played a game of HORSE with my son – he’s getting to be a pretty good shooter.  I was able to lie with him on his bed and just talk.  He had questions tonight about brain tumors believe it or not!  We’re honest with him about it.  There’s no need to talk about the end-game, but he explained to me that because I have a right-frontal lobe tumor, the left side of my body doesn’t work right – and he said he wrote that down because he’s trying to figure out how to cure it.  Wow.

I’ll end here… 

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Today was a long day – and a circus at times! 

I met with my Neuro-Oncologist at 1pm and everything went well.  MRI looks ok – some “worsening” noted but at this point there is NO way to understand whether it is because the area is irritated from the gamma knife procedure (more likely) or there is actual issues.  My doc isn’t concerned.  So, we talked about that, the protocol we’ll follow with the vaccine then went through the standard “can you see my fingers here, there, there, here, how ’bout over here” etc. 

My case manager asked if the press could be present during my vaccine appointment in the Infusion Center because this was kind of a big deal and they want coverage.  No one in Northern California has ever used this, let alone at Sutter.  It’s a very cutting edge treatment and I’m all for it – the more I can help create awareness about brain cancer, treatment options and this vaccine the better.  We headed down to the Infusion Center after I was aware of this.  When my case manager and I got there the Sacramento Bee (Sacramento’s largest newspaper) was already there waiting – a reporter and photographer. 

So, while a team of nurses went to retrieve my injections from a centrifuge (I hope to have pics to post here tomorrow – it looks like something from outer space), I sat in a private room with a bed and was interviewed by the Bee reporter.  She was a great reporter.  She really wanted to know my whole story – first surgery, second, gamma, the vaccine, what it does – everything that brought me here today.  She wanted to understand the “back story”, my family – how this was affecting my wife and kids but of course wrapping this all around the events of today.  She asked me how I felt today and I told her that God brought me here and this is a blessing from Him.  She asked if I’m a religious man and I simply responded that I’m a Christian, attend Bayside Church in Granite Bay and believe that God has this all mapped out for me.  I continued by saying that we may not understand why I’m on this journey but I am and it’s not my plan, it’s His so I’m onboard. 

Once the vaccine was in the room other people had gathered around – there were probably 10 or so and in a 5 minute flash, both injections were done and we all gave each other a high five (even the SacBee staff).

So this was a good day.  From here forward we can see what happens and how my system responds to the vaccine.  We are praying for the best here – but praying for His will, whatever that may be.

There may also be some TV coverage with this – such as a piece on KCRA (the NBC affiliate here in Sacramento).   I guess this is really a buzz at the hospital and the press is interested.  Personally, think it’s great.  All of this for me is about awareness and hope – letting people know that advances are being made and there are people battling the same condition but are finding treatments, not using the same standards of care.  People need to know they aren’t alone.  They need hope.  They need to know that there are others that are living under the same circumstances.  Having frayed nerves around MRI scans.  Undergoing surgeries.  Taking new drugs.  Feeling fatigued and sick.  There were others that came before me and people that have come after me.  We learn from each other but most of all, we learn that we are not unique and certainly not alone in this.  

I’ll post pictures of the “space-pod” looking vaccine transporter when I can.  It’s fascinating in a word!

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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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