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Radio Interview Re: DCVax

Brain Tumor Vaccines, DCVax No Comments »

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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Sacramento Bee – Canadian turns to Sutter for DCVax

Brain Tumor Vaccines No Comments »

A good article ran this morning in the Sacramento Bee.  My neuro-oncologist, Dr. Wu and the rest of the Sutter team that have been handling my use of this experimental vaccine are now in the process of evaluting another patient who has come to Sacramento from Canada to undergo treatment using DCVax.  As the piece notes, this is only the second compassionate use case in the Sac Region – mine being the first.

It’s my prayer that the vaccine provides Johan Kruus and his family hope.  There is always hope and I can identify with what I’m certain was a long emotional process in obtaining the vaccine.  The company needs funding to conduct more trials.  It’s fundamental business – particularly if they are funding compassionate use. 

I have spoken to numerous brain tumor survivors about DCVax and the funding issues.  One in particular, Paul Gibbs, is aggressively pursuing some answers to the funding question.  He is passionate and tenacious.  There may be more to come on this here but I just haven’t had time between appointments and family time to discuss further.

I’m going to paste the SacBee article here.  After my blog started veering into a political direction, albeit slight, of limited duration and short-lived, anyone who wants to comment on healthcare can head on over to the SacBee by following this link to the Bee article and join in the debate.

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My Previous Post

Brain Tumor Vaccines, DCVax 2 Comments »

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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MRI Results – July 2009 – WOW!!!

DCVax, MRI 10 Comments »

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. 

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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:

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july-20-2009-w-and-wo.jpg

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:

 july-20-profusion.jpg

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.

july-20-2009-mri-report.jpg

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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Celldex Vaccine – Interview with CEO

Brain Tumor Vaccines No Comments »

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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Cancer Vaccines

Brain Tumor Vaccines No Comments »

There are other vaccines being researched and developed and perhaps one day a vaccine may be the answer to prevention.  The answer of course is what so many are seeking.  Take a look at this story on MSNBC regarding a vaccine,  for melanoma when you have time – the concept is similar to DCVax but of course DCVax is not harsh as this apparently is given it has to be administered in the hospital.

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May 7 2009 MRI Results

Brain Tumor Vaccines, DCVax, MRI 5 Comments »

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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Third Vaccine Treatment

Chemotherapy, DCVax 8 Comments »

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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Anniversary Weekend

Brain Tumor Vaccines, My Story 2 Comments »

towerbridgeanniv.jpgMy wife and I had a great weekend.  Our 8th Wedding Anniversary is actually today but we celebrated it over the weekend.  It was so nice to get away.  We didn’t go far – stayed right here in Sacramento in a very nice hotel right on the river near Old Sacramento – a great place to walk around and relax.  The picture shown is from our room – a great view of the river, the Tower Bridge and Raley Field, home to the AAA Sacramento River Cats off in the distrance.  I booked a suite for us and our entire stay was so nice.  For any of you that have kids, just a nice away together is wonderful.

Things have been going great since I started the vaccine.  I’ve had two vaccinations and I haven’t had this much energy and felt this good in a long time.  My third vaccination is tomorrow so I will leave a post about that.  My understanding is that KCRA will be there, the local NBC affilliate so more exposure to brain tumor survivors about this treatment and not being alone in this journey in the media is fantastic. 

On the more challenging side of the equation, I did have another focal seizure at work today.  Same time, same conference room, same staff!  I’m changing the meeting venue!  I haven’t had one for awhile and I’ve been steadily inreasing the Keppra component of my dosing in anticipation of increasing seizure activity as a result of the Gamma Knife surgery.  I’m about at the max dose for Keppra so I’ll have to find out where we go from here.  You might recall that I had pushed Lamictal up pretty high at one point and ended up at a toxic dosing and in the ER with an awful case of vertigo.  I couldn’t even open my eyes.  So, I’ll work with my neurologist to further control this.

More to come on tomorrow’s vaccinations.  I will also have my first MRI since starting the DCVax vaccine here soon.

Regards,

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Sacramento Bee Article

Brain Tumor Vaccines, DCVax, Press 12 Comments »

041109sacbee1_sizedfrontblog.jpgThe 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.

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Image Below:  How DCVax Works

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

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