Home » 2010 » April

Quote of the Day:

Your faithfulness makes you trustworthy to God.
- Edwin Louis Cole

Starting Temodar Chemo Tonight

Chemotherapy 3 Comments »

A quick update – heading downtown shortly for my first avastin infusion in about 6 weeks.  We waited until we finished the 6 weeks of vaccine injections.  Tonight I will start on temodar for 21 days straight then a 7 day break. Then I’ll go back on for 21 days and so on. 

Please pray that this treatment slows growth and that it doesn’t impact my immune system too much.  You might recall that I did 8 rounds in 2007 and finally came off because my WBC was too low and wouldn’t recover.  Strength in numbers.  I sincerely appreciate it!

A dear friend gave this to Rachael and I.  I wanted to share it with everyone.  A great reminder!


Are you passing through a testing.
Is your pillow wet with tears?
Do you wonder what the reason,
Why it seems God never hears?
 
Why it is you have no answer
To your oft-repeated plea,
Why the heaven still is leaden
As you wait on bended knee?
 
Do you wonder as you suffer,
Whether God does understand,
And if so, why He ignores you,
Fails to hold you in His Hand?
 
Do black doubts creep in, assail you,
Fears without, and fears within,
Till your brave heart almost falters
And gives way to deadly sin?
 
All God’s testings have a purpose-
Someday you will see the light.
All He asks is that you trust Him,
Walk by faith and not by sight.
 
Do not fear when doubts beset you,
Just remember-He is near;
He will never, never leave you,
He will always, always hear.
 
Faithful is He who has promised,
He will never let you fall,
Daily will the strength be given
Strength for each and strength for all.
 
He will gladly share pain with you,
He will gladly give you peace.
Till your tired and weary body
Finds its blessed, glad release.
 
When the darkened veil is lifted,
Then, dear heart, you’ll understand
Why it is you had to suffer,
Why you could not feel His hand
 
Giving strength when it was needed,
Giving power and peace within
Giving joy thru tears and trial,
Giving victory over sin.
 
So till then just keep on trusting,
Thru the sunshine and the rain,
Thru the tears and thru the heartaches,
Thru the smiles and thru the pain
 
Knowing that our Father watches,
Knowing daily strength He’ll give,
Victory for each passing hour,
This is life, so let us live!
 
- John E. Zoller

 

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Cards for Tomorrow

Family, My Story 3 Comments »

We still pray daily for healing and we all pray for what we believe is the best plan in life for us.  However, no one really knows.  Do you?  I don’t.  What I do know is we all have purpose and because I am faced with this, my focus lately has been on finding ways to pass on memories and ideals to my family.  Videos for the boys will be great of course.  This is my first idea though and will be the gift that keeps giving.

I’ve not resigned myself to death here!  So don’t get the wrong idea.  I’ve dusted off my pants and am ready for whatever is next but what I have is now and I’m getting this done. 

YouTube Preview Image

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Treatment Plan

Brain Tumor Treatment, Chemotherapy 1 Comment »

After a long discussion at the Neuroscience Institute this morning, we have decided to go back to Avastin as the staple and use a rotating system of an additional drug month to month that will be switched out potentially – depending upon how I’m doing. For starters I will go back on Temodar. 21 days on, 7 days off with IV Avastin every other week. Temodar can be switched out for VP-16, Carboplatin or a host of other drugs. These are viable options that we think a) strike a good balance between quality of life and length of life, b) provide freedom in making choices to fold in other medications and c) hopefully provides us with a window of time to research and find a trial/treatment that is worthwhile pursuing. Even trials have drawbacks – the most significant of which to as a patient is the acceptance criteria. For me that would mean the trial would have to accept patients who have had:

  1. Recurrent GBM
  2. Previous use of Chemo agents (Temodar, vp-16, etc
  3. Previous Surgeries (including stereotactic radio-surgery such as Gamma Knife)
  4. KPI score +or> X

The problem with some trials is that you lose a lot of your lattitude, meaning you are locked into their guidelines so it’s not exactly all rosey there in the land of drug trials. Some only allow newly diagnosed, or that you cannot augment the trial with other drugs of your choosing for example.

I’ve been through 8 rounds of Temodar but I was on a 7 days on, 7 off regimen. I posted about this back in October, 2007 when I described how those first five days on Temodar went and the routine I developed. Because I’ll be on it a week longer each month, I will only be taking about half the dose. That will help in reducing side effects, mainly upset stomach. I should be able to handle this just fine. It wll be interesting to see if the cumulative effects of treatment come into play at all.

For now that’s it.

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Great Verse

Christianity No Comments »

Max Lucado’s writings are amazing. He is just real and down to earth. The following is a great example. This is an excerpt from a devotional called “Yea, Though I Walk Through The Valley of the Shadow of Death”

John 14:1-3

Don’t let your heart be troubled
Trust in God, and trust in me. There are many rooms in my Father’s house. I would not tell you this if it were not true. I am going there to prepare a room for you. After, I wiil come back and take you to be with me so that you may be wher I am.

What kind of statement is that? Trust me with your death. When you face the tomb, don’t be troubled! You get the impression that to God the grave is a no-brainer. He speaks as casually as the mechanic who says to a worried customer, “sure, the enginevneeds an overhaul, but don’t worry, I can do it.”. For us it’s an ordeal. For him it’s no big deal.

We must trust God. We must trust not only that He does what is best but that he knows what us ahead.

Good stuff

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MRI Results – April 20 2010

Medical Updates 7 Comments »

I spoke with my neuro-oncologist last night after leaving a message for her. I always ask for a CD with all of the images and know enough to be dangerous. I certainly know enough to catch certain things and I called her after seeing a particular area that looked like a new tumor.

Two new tumors! Sheesh. Come on now. When it rains it pours. When it pours, get a larger umbrella, right? Still. VERY disheartening and disappointing – Rach and I had a tough night.

There is progression with what was a small area to what is now a lesion measuring 4.5 cm by 3.1 cm by 4.6 cm. Particularly troubling to me is that there is increased involvement of the left corpus callosum. If it jumps to the left hemisphere then I can start having deficits on the right side of my body.

This behavior, not to sound unemotional and all clinical, is typical of an aggressive glioblastoma so we haven’t ever buried our heads in the sand regarding the potential reality here. However, there is a ton of fight here, it’s one day at a time and none of us are ever alone in this.

I personally walk with God. How people go about it is a personal choice. For me God is in the middle of everything – the air we breathe. He decides when it’s time. Until then, each day is a gift to spend time judiciously with my kids, family, friends and doing things that are fun! Next is a new search for trials/treatments for recurrent GBM. Starting back on Avastin in the meantime. Going in tommorow to talk strategy.

Here’s an image of the MRI. I made some notes to point out a few things related to one of the new lesions. Just click the image below to blow it up. The large area is the original tumor site. There is progression as it has recurred and grown in size based on what I know right now. I will have much more concise info tommorow

More to come. Prayers are appreciated – especially for the kids.

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Safari West Slide Show

My Story, Travel 2 Comments »

As mentioned, we took a lot of photos and video when we went on our trip to Safari West in the Santa Rosa, CA. I found some time this weekend to bang ou the dvd that contaims the main video and also slideshow. I uploaded the slide show to YouTube but you can ut right here:

YouTube Preview Image

Big day tomorrow. 9am I pick 2 new foot bracecs to try at PT at 10am, followed by an appt w/GP then an MRI! Sheesh. Anything else to be addaed?

More to conm…

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Seizures

Complications, Seizures, Side Effects 3 Comments »

I’ve had a strange 24 hours. I had a very odd seizure yesterday that was localized to my left hand as usual. What was odd is that it took my hand hours to recover (from the numbness and tingling). I’m having a harder time opening and closing my left hand today. I also felt a lot of numbness in the area of my left torso (in the area of where your kidneys are located). This is new. I am requesting an MRI which we planned to do anyway but I want it asap. I had another this morning but my hand recovered fine and there were no signs of numbness anywhere else.

I want to rule out certain things other than the tumor such as small stroke. Ultimately, I believe this is all related to gamma knife, aggravation of the tumor site(s) and/or growth or shrinkage but an MRI will tell for sure. At the cancer center now for vaccine injections.

More to come.

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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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