Blogging in B Minor

On Friday I will use the last dose I have left on the shelf of DCVax, a personalized, experimental vaccine I have been using since last April.  It’s a little unnerving knowing that a vaccine that is with a 10 month recurrence free  has been exhausted. Where a door closes a door opens. This treatment served its purpose and I was very fortunate to have been given the opportunity to be a part of the trial. I have actively been looking at other emerging treatments. In the interim, we will continue to use MRI to monitor and go back to a cocktail of IV+ oral medications. This regimen is not hard to handle for me. It will be no problem.

As difficult as it’s been at times missing my career, this was the best decision I could have ever made given the circumstances. I’m still adapting and I very much miss applying my skills on a daily basis. I miss the most are the people. The people in the culture of the organization I worked for was amazing. On this of course doesn’t compare to what I’m experiencing with my family.

Back to the vaccine – for those that are unfamiliar with DCVax, I’m embedding a post from last year that includes a newspaper article and does a fantastic job at explaining how the vaccine is made and how it battles a brain tumor.

Sacramento Bee Article

Last modified on 2010-03-05 21:37:03 GMT. 13 comments. Top.

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)

I will update later when I have more info on the treatment plan and upcoming MRI ( probably next week or two).

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As most know that follow my blog, I am continuing now with my vaccine therapy.  I have 2 doses left after using one of them on Friday.  We’ve also been trying something interesting.  Each dose consists of 2 injections , one in each arm.  For the last two sets we have been using Aldara cream.  I’m placing the cream at the injection sites 48 hours in advance under tagaderm bandages changing them once.  The theory is that this will pull more dendritic cells to the surface of the skin thus allowing for more “scouts” to carry the vaccine to existing tumor.  Call it super-charging the process if the hypothesis is correct.  I’m using the cream for two days post-injection.  Only a few seizures since gamma-knife – focal and localized in my left hand. 

I continue to be amazed at the power and blessings that God has given us.  I’m not working but so far my most important accomplishment is how much more I have fallen in love and bonded with my son Keegan.  He’s almost 3 (July) and I have never spent this much time with either of the boys.  Of course with Aidan being older I have spent a lot of time on weekends coaching him in soccer and doing other things but I didn’t do what I’m doing with Keegan with Aidan.  It’s been great except yesterday when he decided to play mountaineer and apparently lost his footing and fell!  He’s fine.

I’m back in touck with some near and dear friends which is really nice.  What a gift to have the opportunity to thank people, tell them how they influenced your life or just that you love and care about them.  I don’t know that everyone who leaves this place is able to really do that or at least to the extent wanted.  It’s great!

I’ll have the vaccine again a week from Friday, and another MRI here in a few weeks but it’s about today.  Later Avastin will be folded back in along with VP-16  and Valcyte.  We’ll likely have to move rapidly to other treatment modalities

I’m going to speak at UC Davis at a Brain Tumor Survivors Meeting in May.  The topic?  How to use technology to effectively support treatment.  I’ll save details on this for another post.

Spring is beautiful here so far.  The days have been nice.  Slight breeze and sunny.

Cheers,

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I had an MRI on Thursday which was 30 days post-gamma knife. As you might recall, a second tumor appeared 30 days ago and I immediately was scheduled for gamma knife which was a great way to address the problem. I really prayed for was that the original tumor resection site was stable and that the Gamma knife treatment directed at the new tumor would essentially destroy most of the tumor tissue. Of course the risk continues to be centered around motor function, left-side weakness and seizures.

First, here is an image of the scan (click for a larger view):

The yellow arrow represents the original tumor. The report indicates that this is stable which is great news. The red arrows point to the new tumor location and as you can see it is now hollow to spare you the medical jargon. The only possible issue that is something to potentially be dealt with in the future is scar tissue from the recent Gamma knife procedure. Sometimes Gamma knife can result in what’s called necrosis, or scar tissue. This can irritate areas of the brain and result in brain swelling. If frequent headaches result, sometimes surgery is necessary but I am far away from anything like that, so all in all this procedure went well and I am very happy with the scan.

Moving forward the plan is going to be pretty aggressive. I have three doses of DCVax left.  We’re going to administer those over the next six weeks, two weeks apart. After the first two doses I’m going to start back up on avastin.  I will likely go back onVP-16 which has obviously done the job over the last 30 days in stabilizing the original tumor. I’ll also continue taking Valcyte. I am like a drugstore cowboy! I have an entire cabinet in the kitchen dedicated to my medications. It’s unbelievable.

Today is good. I’ve been very tired due to family and friends being in town the last three weeks so this weekend is the weekend to relax and catch up with things around the house.

Thanks to everyone for all your prayers around this latest MRI. They really mean a lot to us.

God bless

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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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