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Quote of the Day:

Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment.
- Buddha

National Brain Tumor Society

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nbts.jpgJust a real quick post – and I can’t believe I didn’t post this when it happened!  If you didn’t know about it, the National Brain Tumor Foundation, an organization that I volunteer through to assist other newly diagnosed brain tumor survivors who are in need of support, merged with the Brain Tumor Society, another first class organization.  The two organizations combined bring together the best of research and patient services to be a comprehensive resource for patients, families, caregivers, researchers, and medical professionals.  This merge was completed several months ago and the you can access their web site by visiting braintumor.org.

One of the great services on the site itself is a message board.  Register to use them.  You can network with other survivors.  This helps you – you are not unique.  Many feel alone in the beginning, I know I did.  After all, there are only 20,000 primary brain tumors diagnosed in the US annually – primary of course meaning it’s not a met. 

Take a look – a great resource.

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Holidays and Treatment

Brain Tumor Treatment No Comments »

Like everyone, we are in the middle of trying to get everything wrapped up for the holidays.  It’s a bit more difficult this year – I am so used to just flying up on a ladder and putting lights up and getting things down from the attic but with the deficit in my left leg I just can’t do some of the things I used to do before.  Par for the course.

2008 Holiday PictureWe did get the cards ready and decided on the do it yourself picture this year and it came out I think as best as it could – we couldn’t get Keegan to smile as you can see – but he’s 17 months old and wasn’t in a great mood.  The picture was embedded on a great background which I didn’t include here – just the picture so at least this part is done.

While we were running around, I also snapped this picture of Rachael and the boys.  This was all over atimg_1502.JPG a new shopping mall called The Fountains in Roseville – it’s across from a huge mall called the Galleria but a real nice place to walk around.  Of course you’re wondering where I am!  Well in picture on I’m holding on to Keegan’s left leg firmly so he didn’t squirm away and I took the second picture.  Things blew apart shortly after what ended up being the “Holiday” picture so we got some coffee and made our way out of there.  It was a lot of fun though in spite of the challenge it is to take pictures with kids.  Too bad Keegan wasn’t as thrilled as he was in the picture with Mom!  We probably should have brought someone along and tried for a family shot but oh well.

So, this week brings my second Avastin infusion.  That will be on Tuesday.  I also now know I’m slotted for the first week in January for the vaccine.  It’s been a winding road with that as you know.  So, we’ll move forward with Avastin and when it’s time for the leukapheresis which is the last step before the lab makes the vaccine I’ll move forward.   It’s about $2K and I’m not sure if insurance will cover it but it really doesn’t matter much – we’ve got to move forward with this if it makes sense.  Worst case, the Avastin is doing it’s job, which means it’s shrinking the area where the resection took place and any residual disease and we keep using it and introduce another chemotherapy such as irinotecan or accutane.  Accutane has been used for severe acne but has been used successfully for brain tumors in concert with Avastin.

So far I’ve been fine with the Avastin – no sign of side effects.  My med levels seem to be ok as well.  Not much in the way of vertigo symptoms.  I’m watching out for break-through seizures at this point though.

Alternative Medicine

I’ve just started looking into some interesting information I obtained through the Annie Appleseed Project.  My brother is connected to an Executive at the Love Hope Strength Foundation and she referred me to a board member at the AAP.  To make a long story short, they are proponents of the work  of Stanislaw R. Burzynski, MD, PhD at the Burzynski Clinic.  He has some interesting approaches involving antineoplastons.

She forwarded me a lot of information so I’m just started to go through it and I’m very grateful for the info.  I don’t have much else to share at this point but will fill you in as I learn more.  Not even sure if it’s something I will pursue but I will look at anything and everything.

Cheers,

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Started Avastin

Chemotherapy 3 Comments »

More on the DVax-Brain vaccine saga in a moment, but put shortly my slot is set to start in the first week of January which for a Glioblastoma Multiforme patient is an eternity from my surgery date of 10/15/08.  Therefore, I can’t stand around for that long and leave this untreated for that long.  There are people with GBMs that die in 3 months if they don’t treat these tumors quickly!  We had to wait 4 weeks which is standard but we are coming up on 8 weeks past that period.

So, I have started using Avastin and had my first infusion on Tuesday and I will receive an infusion every 2 weeks.  It’s an IV-based therapy that was first approved in 2004 for metastic cancers (cancers that have spread to other parts of the body).  Colon cancer and non-small cell lung cancer were the first followed by breast cancer in 2008.

Avastin has shown to be very effective in treating GBMs.  Put simply, it works by inhibiting tumor growth by blocking the formation of new blood vessels (angiogenesis) and was the first clinically available angiogenesis inhibitor in the United States.

Updated:  Here is a great article that ran in the Wall Street Journal about Avastin. The same article appeared on Virtual Trials as an embedded article on their site.  What is amazing is that last night I received an email from the editor of the Wall Street Journal health blog telling me to take down the article as an embedded article, that I am reproducing their site in my site and it’s not allowed.  Placing a link is fine but putting the site in an iframe, in spite of the fact that all of their advertisement, links and authorship credits (i.e. I’m not stealing anything) and anything else they place on the site are all in tact is not OK with them.  This is all going on while VirtualTrials.com has conducted the same practice via the link above since 11/5/08.  I posted this yesterday and received an email the same day asking that I pull it down.  Such is the ins and outs of the legal world but it was very surprising – I’m a fairly small concern here!

Here are links to both articles on the Wall Street Journal site:

Genetech Seeks FDA Nod For Avastin For Brain Cancer

Targeted Drugs Take a Crack At Brain Cancer

My insurance company has been terrific.  I have not received a single denial of coverage.  Avastin is $10K+ per infusion and I will receive one every 2 weeks.  Since the first infusion on Wednesday, I have had ZERO side effects which is great.  I went back to work on Tuesday as you know and had a normal day on Thursday and Friday so I’m thrilled.

When the vaccine is available, we can take advantage or if I am really responding well to Avastin, we can add another agent on top of Avastin and use cryogenics to preserve the vaccine and implement later.  The issue with the vaccine (the current issue – new issue, whatever you want to call it) is we didn’t know we needed a “slot” with the lab.  Apparently we do which, as I said, is January.  It’s really turned into a learn/become informed as we go situation which is unfortunate when your life is on the line.  So, we have to go on to other solutions for now.

That’s it for now.  We celebrate Christmas so the tree is in our house.  Our good friend Tom and his wife came by and he was kind enough to climb the pull-down attic ladder and retrieve our bins of decorations so we should have everything up pretty soon!  The Holidays will be great and we are really looking forward to them.

More soon…

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A New Day

Christianity, Inspiration, Support No Comments »

Just a quick post – I am in a much better place today.  I woke up during the night looking forward to work!  And, I do know that God is in the middle of this.  I appreciate the comments and emails very much.  I do know it’s normal and human to feel this way.  I screamed in the car after church on Sunday!  It actually felt good.  But, today I feel better.  It felt good to put on a suit and tie, dress shoes and head into my office – a great prank someone set up upon my arrival, etc. 

I have two appointments today – one with my neurologist to discuss my medication levels going back to the issue with Lamictal and the vertigo incident and the other with my neuro-oncologist to discuss to possibility of undergoing an Avastin infusion between now and when I start the vaccine which should be in the next week to two weeks.  However, this could be prudent given the wait time so that is our topic.

Again, thanks for all of the support.  It’s much appreciated…

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Under the Same Sky

Musical Pursuits 2 Comments »

I know my post last night was a downer.  I couldn’t sleep well last night and I often turn to music.  I am NOT much of an instrumentalist at all.  I’m a production guy.  I come up with a good piano groove, marry it with a drum groove, bass line, textures, strings and then write lyrics and come up with a melody and vocal that works. 

Last night I just needed to play.  This is just straight piano – 2 takes.  First take was just to play for a few minutes.  Second was just hitting the record button.  It’s repetitive and I’m not particulary fond of it but I’m calling it Under the Same Sky.  It’s four minutes.  As I played, I just thought about how all of our lives are so different but we all live amongst each other.  And even though we might feel unique, there is someone out there struggling with the same issue, somewhere.

Anyway, up since 3am.  Back to sleep.  :-)

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