Brain Tumor Vaccine

Home

Quote of the Day:

Don't go around saying the world owes you a living. The world owes you nothing. It was here first.

- Mark Twain

Apr 14

Last Brain Tumor Vaccine Injection

Brain Tumor Treatment, Brain Tumor Vaccines, DCVax No Comments »

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).

Subscribe by Email RSS Subscription

Mar 28

Healthcare Conundrum

Press 2 Comments »

This situation is the heart-breaking reality of today’s state of affairs with regard to healthcare. She has the same tumor I have – a GBM. It kills. Most times quickly. I can’t imagine using a treatment modality that has been effective only to have it pulled because of some beaurocratic, arbitrary rule. I have had a cocktail of drugs and an experimental… treatment. I had stability on DCVax, a brain tumor vaccine and temodar but most have failed. This is unconscionable.

I think many of us in America aren’t happy with what has happened over the past several weeks in Washington D.C.. All we can do is look to God and know with complete faith and abandon that He is the rudder. We have too many God-given skills and knowledge as a people, coupled with compassion and an instinctual need to save lives, for politicians to destroy the human spirit’s drive for sucessfully treating people, performing research and driving for a cure.

Subscribe by Email RSS Subscription

Mar 24

Brain Tumor Vaccines, DCVax, Medical Updates 1 Comment »

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,

Subscribe by Email RSS Subscription

Mar 13

MRI Results

DCVax, Gamma Knife, MRI, Medical Updates 3 Comments »

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

Subscribe by Email RSS Subscription

Mar 10

CNN Article – Brain Tumor Vaccines

Brain Tumor Vaccines, Press No Comments »

This is a little late but I was reminded of this today and meant to post it when I first read it.

Subscribe by Email RSS Subscription

Dec 31

Happy New Year

My Story 1 Comment »

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

Subscribe by Email RSS Subscription

Dec 22

Happy Holidays / Progress

Brain Tumor Treatment 1 Comment »

As usual it’s the last minute shopping and wrapping for Christmas. This is a great time of year but it’s also so busy. In addition, I started back on treatment using avastin and and valcyte. As you know, I had to take some time and stop chemo treatment after my bout with the flu to give my marrow time to generate white blood cells. The week before last I had a DCVax injection and last Friday I went in for an avastin infusion since my counts are back up. I feel a lot better now that I’m back on treatment using multiple agents. I have an MRI scheduled for January 8th. At that point we will be able to more info regarding the small area of enhancement that was seen on the MRI taken while I was in the hospital. You may recall that MRI report indicated that there was a small area subacute ischemia. Put simply, this is conjecture on the part of the neuroradiologist but it could be either a small TIA that occurred in the hospital or it could be tumor.

I have spent time in physical therapy focusing on both my leg and my left arm. Slow progress but getting there The same holds true with my left leg. So, I’m doing as much as I can at this point in time.

A friend of mine pointed me to this interview with Ben Stein on CBS Sunday morning. The interview actually took place in 2005 with Charles Osgood. He had some very thought-provoking things to say that I think are very true. I’m going to paste majority of this below. When you think about it what he says is so true. I won’t provide any commentary because it’s really not necessary. It speaks for itself.

Also, I wanted to let all of you know that I really appreciate all of the e-mails and comments that you have left on the blog that have encouraged me through this setback. Even though I can’t respond to all of you know that I really appreciate the encouragement and prayers.

Wishing you all happy holidays

======

Herewith at this happy time of year,
a few confessions from my beating heart:

I have no freaking clue who Nick and Jessica are. I see them on the cover of People and Us constantly when I am buying my dog biscuits and kitty litter. I often ask the checkers at the grocery stores. They never know who Nick and Jessica are either. Who are they? Will it change my life if I know who they are and why they have broken up? Why are they so important? I don’t know who Lindsay Lohan is, either, and I do not care at all about Tom Cruise’s wife.

Am I going to be called before a Senate committee and asked if I am a subversive? Maybe, but I just have no clue who Nick and Jessica are. Is this what it means to be no longer young. It’s not so bad.

Next confession: I am a Jew, and every single one of my ancestors was Jewish. And it does not bother me even a little bit when people call those beautiful lit up, bejeweled trees Christmas trees. I don’t feel threatened. I don’t feel discriminated against. That’s what they are: Christmas trees. It doesn’t bother me a bit when people say, “Merry Christmas” to me. I don’t think they are slighting me or getting ready to put me in a ghetto. In fact, I kind of like it. It shows that we are all brothers and sisters celebrating this happy time of year. It doesn’t bother me at all that there is a manger scene on display at a key intersection near my beach house in Malibu. If people want a creche, it’s just as fine with me as is the Menorah a few hundred yards away.

I don’t like getting pushed around for being a Jew and I don’t think Christians like getting pushed around for being Christians. I think people who believe in God are sick and tired of getting pushed around, period. I have no idea where the concept came from that America is an explicitly atheist country. I can’t find it in the Constitution and I don’t like it being shoved down my throat.

Or maybe I can put it another way: where did the idea come from that we should worship Nick and Jessica and we aren’t allowed to worship God as we understand Him?

I guess that’s a sign that I’m getting old, too. But there are a lot of us who are wondering where Nick and Jessica came from and where the America we knew went to.

Subscribe by Email RSS Subscription

Nov 22

Cognitive Endurance Tools

Recovery 1 Comment »

I’ve been looking around for some “brain exercise” or fitness apps/tools to just exercise it for sharpening. I believe that it’s important, particularly with short-term memory lapses ocurring from time to time. Looking at it as a muscle, it needs work. For me and my various areas of focus, mental fitness is something that must be maintained as much as possible. Just as going to PT, I have to exercise my brain. I am fortunate to have the ability to work and do well but I need to stay ahead of the curve.

Ideally, I was searching for an iPhone-based app(s) so I could use them anywhere. I targeted apps that would work on my cognitive training/endurance through various methods whether it be spatial recall, logical reasoning, etc. I searched in the appstore and finally came across a great set of tools from Lumosity.

The first, Memory Matrix is great. It’s simple but at 9-10 squares it’s challenging and definitely pushes mental fitness. There are other features of the lumosity web site that I haven’t explored as I was mainly after these mobile apps but it appears you can track much of what you do, leverage online tools, etc. Speedmatch is another one that is worth downloading or using online.

I’m getting ready to plan my next DCVax injections. I’ll be doing this next week hopefully. I’m feeling better – counts are better. Still working against fatigue and having to work harder on PT. I’m feeling additional weakness on the left. These are all things that I can’t change although this run has been a bit tougher. I certainly can’t deny that! At the end of the day, however, it’s in God’s hands. I’m following the path but it’s really not about me – He’s not done with me and I just keep seeing examples of that.

I’ll post about this later, but a gentleman at work just learned he has a brain tumor – a primary and based on what I see it’s a mixed glioma. I’ve spent some time with him and he’s found some information here that has helped him. I know I didn’t have someone, or many, to talk to in-depth about what’s next, how did this go, etc. I feel that if he has to go through it, I certainly am there to help. I’ve walked down the road.

Pray that all are well,

Subscribe by Email RSS Subscription

Page 1 of 6
1
2
3
4
5
6
>

Blogging in B Minor

Quote of the Day:

Last Brain Tumor Vaccine Injection

Sacramento Bee Article

Healthcare Conundrum