Blogging in B Minor

First off, here’s a freaky image!  I want to be this next Halloween!  This look at brain anatomy  is somewhere on my blog but I thought it would be worthwhile to include it in another post.

This really explains the delicacy of the primary motor cortex which is exactly where the two tumors I have are located. The original tumor that was first discovered in January 2007 has primarily affected the area at the top – functions such as the arm, trunk and foot. The second tumor that was just discovered several weeks ago has significantly affected my hand and arm which makes sense if you look at this on MRI.

This diagram is blown out into other diagrams. For example you can find a diagram that just focuses on the face. It’s amazing.

In terms of Gamma knife, the swelling in my forehead has subsided.  It basically drops down from your forehead to your eyes and then into your cheeks.  At one point it was just above my eyebrows and Rachael said I looked like a Vulcan!  I did! It was like a huge ridge that went from one side of my face to the other.  My good looks were just starting though. Next, it dropped into my eyes and I look like I got punched out in a bar. Woo hoo! A cancer patient brawing in bars.  I walked out into the family room one morning and my son Aidan looked at me and said “you look different dad – have you looked in the mirror?”  Nice.    Alas, it’s gone

I’ve had the normal nausea associated with taking VP 16 but Zofran really helps with that. Still a bit fatigued but that is much better. Over the weekend I was pretty tired but I expected to be.  Tomorrow I’ll be going in to me with my neuro oncologist followed by another Avastin infusion.  I’ll go in for physical therapy.

With the fun stuff, we are looking at a number of options for get-aways. A few local options such as Carmel, Monterey, and other destinations on California’s central coast are convenient. We’re planning a trip right now with Aidan but were not sure where. It’s a trip that will be just for the three of us since Keegan is two and Rachael, Aidan and I have never done this before. There’s a cool safari trip that we can do overnight - you take a jeep trip through a large open area – giraffes bow down and you can touch them and there are a lot of other animals.  Then you can stay overnight in a cabin that has netting and canvas so you can hear the animals at night.  I will take lots of pictures.

God bless

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A very quick post and some pics regarding today’s Gamma Knife surgery.  First, everthing went perfectly and it was successfully completed today.  A long day it was.  We were there at 7:30am and left at 2:00pm. I will get into more details later about the process (this is #2 for me) I thought it would be helpful for some to see pictures of the actual prep involved in Gamma Knife - the prep consumes most of time. 

Warning for the squeamish – some of these pics may not be for you.  After all, they are screwing a device to my head to render it immobile while receiving high dose precision radiation from the machine:

More to come later but wanted to quickly thank everyone for all the prayers.

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I have had a lot going on lately in the middle of the holidays regarding medical tests and treatment options. As I’ve written lately, I’ve continued to lose function in my left arm and hand.  This has been concerning to me considering that the decline has been fairly rapid meaning over the last 90 days.  Since I got out of the hospital when I was treated for the cold I had, I started back on avastin and two weeks ago Thursday I had a DC VAX injection.  I came off of Valcyte for a period of time since my blood counts were very low and I’ve started back on that as well. 

Yesterday morning I had an MRI.  This MRI showed increased enhancement around the tumor. It’s unclear at this point whether or not this is tumor growth, a stroke that has occurred, Gamma Knife continuing to kill cancer cells in the area of the motor strip which is resulting in neurological deficits or edema. Regardless, I will start on a new chemotherapy next week called carboplatin.  This is an IV-based chemo that has similar side effects as temodar.  I will continue with DC VAX, Valcyte, and now carboplatin.  Today, I am meeting with my neurosurgeon and we will discuss if there any options at all surgically. My guess is there are no options at this point but there could be later. Any surgical resection well further involved the motor strip and the likely result will be a complete loss of the left side of my body.  If that becomes necessary later in the choice when faced with this paralysis on the left side versus succumbing to this disease obviously the decision is simple.  However at this point if there are other treatment modalities that can keep the tumor at bay than that is the obvious and preferred course to take.  I will have input from neurosurgical point of view later and we will start putting the picture together.

It is somewhat like being at the beginning again. If you’ve kept up with the blog from the beginning you might recall that I had a decision to make between watching and waiting or performing surgery. After obtaining three opinions I went forward with surgery. In this instance I will likely reach out and obtain a second opinion from the University of California San Francisco. For anyone embarking on this journey I highly recommend that you do the same. It’s not a pot shot at your neurosurgeon. You’re just being your own advocate and ensuring that you’re making the most educated decision that you can.  After all if you are facing the prospect of being paralyzed, you best be as well-informed as possible. I believe I am far from a scenario however we are prepared for anything as we have been all along. We have had enough ups and downs over the last three years to know that anything can change on a dime.  Honestly, avoiding surgery is the goal and every neurosurgeon’s goal is to increase neurological function, not decrease it. That is what’s difficult about my case and other people’s cases. As is the case with many brain tumor survivors, I came from a position of being a high functioning individual.  I operated in a high functioning professional environment, lived a good life, could run, throw a ball to my son, etc. and I’m losing function (I can still hammer a soccer ball to Aidan).  Some people come from having minimal functionality because of their deficits and surgery actually improves their situation.

I will update my blog when I have more information but it may take a day or two. Typing is the challenge and I’m experimenting with some dictation software which is a huge help.

Best to all of you.

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It’s hard to believe that an entire year has passed again. 2010. It seems like yesterday that it was 2009 and we are celebrating the new millennium.  For us, this year has been a year of challenges and frustrations but more importantly it has been a year that we have had many good times that we really try to focus on. Living for today every day throughout the year can be challenging as you know that it’s the right way to live for us.

Having a GBM is not the end of the world. In the beginning you do feel that there is so many other people in the world that have their own issues and you realize that you are not unique as the brain tumor survivor nor are your family and friends. A good case in point is my coworker who was just diagnosed with a brain tumor about a month ago. Yesterday when I was at the oncologist’s office very nice receptionist who I’ve gotten to know told me that she’s been diagnosed with MS. I feel for both of them she told me that she wanted her old self back I completely understand this feeling. But in time you realize you have to go on. And we do.

In February of this year I had a recurrence. This was 4 Months after my second surgery in October, 2008.  That led to gamma knife surgery in March. Typically, when you have a recurrence, the next recurrence (if it occurs) becomes even shorter from the last.  Oh no!  Statistics!  Well, put those to rest by reading this post.   I had Gamma Knife in March and then started an experimental treatment called DCVax Brain in April.  Read the Sacramento Bee article to learn more.   I continued with Avastin and a drug called Valcyte.  The only time I came off of this regimen is when I was hospitalized for a bad respiratory infection called Haemophilus influenzae.  I was very neutropenic.  Since then I’ve contined back on the same drugs.  Seizures?  Rattling for sure but part of the territory and God walks beside us through all of this. 

So guess what?!  10 months since the recurrence in February, more than twice what our so-called stats indicate.  I’m ready for anything because we have God.  It’s not about me.  This disease and all others are of an earthly nature.  Our God is a loving God who doesnt wish harm on anyone but in the beginning we sure were angry with Him – and let Him know it.  He’s big enough to handle that though.  

Our prayer for the New Year is to live day by day and remember that this is not our plan.  We are doing everything possible to address the problem.  And, as God guides us down this road that He didn’t create, He is putting opportunities for treatment options,  people in our lives, support frameworks and so much more.  Nothing is by accident.  I’ve seen it in my life and others.

I hope everyone has a safe and happy new year and here’s to a healthy 2010…

Cheers

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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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Immunotherapy appears to be gaining a lot of traction in the fight against cancer.  Here is another vaccine that is specifically designed to target brain cancer.  The interview with Celldex CEO Anthony Marucci  can be viewed on CNBC.

 This approach is nearly identical to that of DCVax-Brain.

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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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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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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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Very quick post – my Gamma Knife procedure has been moved up to this Thursday – the 12th.  Everything is being accelerated because the DCVax vaccine will be ready for my use next week (perhaps Tuesday).  The entire team agrees that performing Gamma Knife and then utilizing the vaccine is the right course of action which makes a lot of sense.  So, today I had a quick consult with my neuro-surgeon who is on the gamma team.  Wednesday I’ll meet with a neuro-radiologist and Thursday we’ll get it done.

A lot more to come I’m sure….

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