Home » 2009 » August

Quote of the Day:

Music happens to be an art form that transcends language.
- Herbie Hancock

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…

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Seizures

Seizures 4 Comments »

I took a week or so off here.  Lots going on.  On Wednesday, I went to attend Rachael’s great Aunt’s funeral and literally, when I sat down in the pew and it started, a seizure began.  Most of my seizures haven’t amounted to much since July of 2007 after my first craniotomy.  They are pretty small in intensity.  As we stood to sing Amazing Grace, it came on stronger and I had to sit.  I took an ativan and waited about 5 mins.  No relief.  I took another – still wasn’t subsiding.  So, my Father-In-Law helped out of the service.  I wanted to be in the car with the air running.

 Rachael came out and after a total of 45 mins elapsed, I made the call to go to the ER.  I was there from about Noon to 6pm.  They IV’d ativan and morphine since my left arm had smacked the gurney so many times.  Not much else to say.  It was brought under control and that is what I knew would happen by making the trip but it’s not too fun. 

I feel pretty good now.  I have had 3-4 since – small ones, which is common after a large seizure like this.  We are opting to look at this as a one-time event and not be reactive and start changing the meds around.  This could be gamma knife related.  I’m still in the 6 month post period when seizures can ramp up.   More to come on all of this.

 Just to be safe, I’m having an MRI later next week, then leaving for Lake Tahoe as planned for a nice getaway on Friday morning – regardless. 

 Cheers – stay in today…

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

Treatment this Week

Brain Tumor Treatment 1 Comment »

I’m back on track this week after the great MRI I had showing low or no bloodflow in and around the tumor as well as some shrinkage.  I’ll have appointments on Wednesday to resume Avastin infusions every other week.  The avastin really agrees with me well so I typically don’t have any problems.

An area I have been working on lately is my gratitude list.  It’s condensed – there are so many items but I have gone over this multiple times on my own and with my son, Aidan.  Simple things – a house to live in, food on the table, cars to drive, clothes to wear – private school for Aidan.  Some of these items we just take for granted but when you step back and look at the world, many of these are luxuries.  I can recall when we attended Saddleback Church in Southern California and Rick Warren would say that if you have a bank account, food in the refrigerator and a roof over your head, you are wealthier than 95% of the world’s population.  Hard to believe hut true.  But many people just cruise through with this luxuries in place and don’t realize how fortunate they are.  My son, only 7, is learning this.

I pray for all of the people out there who are walking through the journey.  I have a friend in Wisconsin that I spoke to today and he has a recurrence.  A small area of enhancement but he’s done well.  I believe he will continue to do well.  To Daphne and her husband – Robin, Stacey – many others.  Keep your heads up and have faith.  A lot of immediate concerns and needs and challenges.

I hope everyone is doing well.  More to come…

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark

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.

sacbee-canada-080209.jpg

Subscribe by EmailSubscribe by Email RSS Subscription RSS Subscription

  • Share/Bookmark
   © 2010 Mark L. Miller, All Rights Reserved
   www.markmillermusic.org / Site Map