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People living deeply have no fear of death.
- Anais Nin
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.

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.

041109sacbee1_sized.jpg  041109sacbee2_sized.jpg 

Image Below:  How DCVax Works

dcvax-model.jpg

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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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.

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Mar 02

Napa Wine Country

My Story 2 Comments »

My brother Shawn came into town and has been here over the past 5 days.  It was so good to see him.  As planned, now that I’m off work, I’m trying to spend a lot more time with family and friends.  I was really sad to see him go but we will be having more visits.  I wish we lived closer.   

Here are a few great pics of Napa. 

[flickrset id="72157623537560974" thumbnail="square"]

Medical

I have an MRI this Thursday.  I’ll begin to see some Gamma Knife results (albeit difficult to see because of swelling) and we’ll be checking on the first tumor resection site and anything new of course.  I’m continuing to have a CBC done each week at the lab just to make sure my counts are good.

I’m also talking with my neuro-oncologist about starting up the vaccine in about 2 weeks.  I have 3 doses left (a dose consists of one injection into each arm) and we’ll use them in a booster fashion – every 2 weeks.  Pulling out the stops on the rest of the DCVax.   Avastin and VP-16 are the other two players in the plan along with valcyte.  Yeah!  How’s that for a brain tumor cocktail….post-gamma knife!  The positive is I’m more used to VP-16 so side effects are spread apart.  We’ll settle on everything after the MRI.

I’ll post info about my MRI later this week. 

I’m feeling at peace with things.  Getting away helps but a lot of prayer lately has helped tremendously. I was meditating on Proverbs 23:7 today.   ”For as he thinks in his heart, so is he (Proverbs 23:7, NK).  I sometimes read the devotionals on Joel O’Steen’s site and this piece asked the question, “do you ever stop to think about what you’re thinking about?”  The Bible tells us that what happens on the inside of us - our thoughts, attitudes, and motives are more important than what happens on the outside in our actions.  Jeremiah 29 tells us that His thoughts are for our good. His thoughts are for our peace. His thoughts are for our victory! 

The entire goal of course is to align our thoughts with His thoughts by meditating on His word. 

Cheers,

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Jan 05

January 5, 2010 Update

MRI 2 Comments »

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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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

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Sep 22

Treatment Update and Concerts

Chemotherapy 1 Comment »

I haven’t posted for a bit – just continuing treatment and spending time with family.  Things are good.  On the medical front, I had my bi-weekly infusion last Thursday and met with my neuro-oncologist.  I’m continuing with physical therapy every Wednesday and working hard to strengthen my left leg.  It’s still weak but working it is helping a lot.  I had a new brace made and that is also helping.  I wear the brace every other day as to not rely upon it too much. 

When talking to my neuro-oncologist, I learned that I do not have 3 years of my experimental vaccine left, only enough for 4 more “boosters” which are 16 weeks apart.  16 week intervals are a bit long for someone with a GBM.  This was a huge delta.  Turns out the initial 3 year estimate was not from Cognate, the company that actually controls and manufactures the vaccine.  Anyway, since I’m not in a trial per se, we can use it as we see fit, so if I need to tighten this up we can.  I can pull it off the shelf I can.  Again, not much I can do about it so I can’t and won’t get stuck here.  It’s up to God.

Our son Aidan is playing soccer and I’m doing some assistant coaching again.  I stumble around a bit but can still kick with the right leg if I plant my left just right.  It’s awkward but being on the field with all the kids is rewarding!  Our son is doing great – he scored his first goal of the year on Saturday.  He was thrilled!

On another topic, I went last night and saw George Winston play live.  Talk about feeling inferior as a musician!  For those that are unfamiliar, he is an amazing pianist.  I have embedded one of his pieces below called Blossom in Meadow.  It was an absolutely amazing experience seeing him live in a small venue.  We were 10 rows back stage left (looking at the stage) so his hands were in plain view.  How wonderful.

YouTube Preview Image 

Also, over the weekend there was an equally amazing guitarist at Bayside Church, our home church.  His name is Josh Wilson.  His acoustic guitar playing using delayed effects is so unique – nothing like it.  This is his rendition of Amazing Grace.  This one you have to head to YouTube to see.

http://www.youtube.com/watch?v=kd4PBZgxCB4&feature=related

I hope you enjoy all of this and I pray that all of you are doing well.

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Sep 04

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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Aug 23

MRI Results – 8/19/09

MRI, My Story 3 Comments »

Before I left for Tahoe, I had an MRI as a recheck just to ensure I wasn’t experiencing any growth.  Sometimes an MRI is a result of a patient being symptomatic of course.  As you may have read, I had a fairly significant seizure so it was necessary.  My last MRI was July 12th which showed a reduction in size when compared to the May scan.  This MRI came back showing further shrinkage and it was done a little more than 30 days later.  The tumor cavity has further collapsed, showing that cancer cells are being killed off.  This is great news!

Several theories.  One is certainly my use of DCVax.  I started this in April and it may be moving in a very positive direction.  I’ve discontinued my use of thalamid – this was 45 days ago.  I want to see if that’s necessary.  I’ll know in the not-too-distant future.  The second is Gamma Knife.  This was done in March.  A third – use of Avastin every several weeks via IV.   We can also look at combinations of each.

My own sense.  It’s a combination of all three.  How’s that.  There is a theory with GBMs and perhaps many brain other primary brain tumors that you keep the tumor guessing to keep it simple.  The Gamma Knife blew away, as much as possible, a small nodule of growth.  The Avastin typically keeps it in check.  In spite of past failures using Avastin + CPT-11 (Irinotecan), we decided to use DCVax with Avastin.  I believe most of our success comes from DCVax.  I’m sure I put data here.  You can do a search on the site and find info.

We are very happy that we have had 2 scans showing a reduction in size.  We’ve only ever managed “stable”, never some positive success.  We’ve of course had failure along the way, such as last Octiber when my tumor was an Oligoastrocytoma 3 and went through an anaplastic transformation to a GBM that resulted in surgery.

A great weekend…

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