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Quote of the Day:

Faith is reason grown courageous.
- Sherwood Eddy
Oct 06

Surgery Pushed to October 15th 2008

Brain-Surgery, Medical Updates No Comments »

Update:  My surgery has been pushed to next Wednesday, October 15th.  There is one and only one reason for this.  We are seeking a cutting edge vaccine treatment that is formulated based on the brain tumor once it is removed.    The team is working hard to determine the best vaccine that we should administer and I’m performing my own independent research.  We will hold a meeting tomorrow after to discuss everything.  Having the additional week to locate this and strive for the most remarkable outcome is worth any additional growth that I may occur.

One such vaccine, CDX-110 sounds very promising.  In several studies, it has doubled survival rates.  You can read about the vaccine at the Duke web site which is one of the brain tumor centers we are in contact with. 

Another update is in our meeting with the Neurological team on Friday afternoon, my own view when I looked at the MRI scans were confirmed, this is grade tumor so we have to go for a total resection in this surgery.  Obviously there are risks here with regard to motor skills on my left side (mostly concering my left leg) but it’s something that it not debatable.  It’s really more of a mandate.  And, the surgery is step 1, followed by vaccine treatment and another treatment such as Accutane.  The good news is treatment side effects are nil.  This is not like going through radiation and chemo after surgery.  I may have to rehab my leg/arm which is fine.  Working 4 hours a day to regain strength – fine.

So, that is where we stand.  Preop appt today, touch base with Neuro-oncologist tomorrow and then we’ll go form there.   That’s it for now….

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Oct 03

MRI Series Completed Yesterday – October 2nd 2008

MRI 1 Comment »

Yesterday I went in again for another series of MRI studies.  These scans are designed to accomplish a number of objectives:

  1. MRI w/o Contrast – this type of MRI is a simple MRI without the contrast agent.  They wanted another series because the first series didn’t include a set without contrast, only with.
  2. MRI Spect – this is what is called a perfusion test.  It is the best way to try and determine the grade of the tumor via imaging.  If we can determine, based on this study, that we believe with some certainty this tumor has gone through malignant transformation then we’ll come up with a strategy right off the bat (and we’ll be armed with the info today for consideration) as to how aggressive we want to be in terms of resection of the tumor.  My guess is this has moved toward or is now a grade 4 tumor.  Therefore, we will be more inclined to sacrafice neurological function on my left side than the last surgery (when it was stable, not growing and a grade 3), in spite of the fact I am neurologically in tact for the most part.  Up-front info however is that I will experience weakness on the left with a pretty good resection.  Some rehab will make me stronger so this is great news.  I will know more this afternoon after my 2:30 with my Neurosurgeon – a big meeting indeed.
  3. Brainlab – this is a mapping scan that will be loaded into the neuronavigation system and will the surgery to operate with extreme precision.  Since we now have the functional MRI capability available (explained below and I didn’t know this at the time I wrote the other post), they will fuse the brainlab data with the fMRI scans to create a complete map of the motor strip, tumor location and the relationship with motor function on my left side.  Amazing.  So, we have the best technology on our side.

Finally, here are scans.  I realized coincidentally that I had a scan exactly one year ago on October 2nd, 2007.  So here are two one year apart – the first scan is from yesterday and the second is from October 2007 as a comparison:

10022008mri_2.jpg100107mrisized.jpg

The primary differences here are the tumor is a) larger although it’s difficult to really tell and b) you can really see that the wall of the tumor is more defined.  The report puts all of this in more perspective and I really don’t have time to get into the details – too much going on.

 Finally, the sagital (profile) view is also interesting in that the tumor never has appeared in these slices of the scans and now it is, another indication that it has grown in size.  Here is the sagital view:

10022008mrisagital.jpg

 That’s all.  We’re doing ok.  As I said – only human, ups and downs but for the most part working the problem – that is the focus.  I’m not sure that I’ll post again before the surgery but as I said, my good friend Glen will post an update out here.

Marching on….

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Oct 02

Brain Surgery Next Wednesday – 10/8/08

Brain-Surgery, My Story No Comments »

Well, here we go.  Surgery number two.  When I looked at that MRI yesterday, I have researched this long enough and looked at enough scans to know one from another in terms of grade.  I knew this tumor was going through malignant transformation.  It just didn’t look good period.  I had a long discussion at home last night with my Neuro-oncologist who had spoken to both of my Neurosurgeons (who had both looked at the film and report).  Both said surgery.  One said surgery and that he felt we could get a really good resection that would likely not result in paralysis on the left side.   His partner, who is my neurosurgeon and lead said that this changes the ballgame completely and asked the coordinator to book an OR at the surgery suite over at Sutter Memorial.   

A tumor that doubles in 60 days doesn’t give you the luxury of time.  12.5% a week – you can’t wait.  Of course you are assuming it continues at that growth rate but what else can you assume?  The worst case scenario.  Rachael and I thought about it last night – not for long though – and we will go forward and have surgery next Wednesday October 8th.  I will have to be more aggressive this time.  They believe they can be successful without paralysis, just weakness – to what degree is unknown.  May need some rehab to build strength back.  I know it’s so cliche’ but it is what it is.  I can’t change this.  We are praying of course.  We are praying for healing, for strength, for hope and a clean surgery.  But this is one of those circumstances in life that cannot be chanced – you have no control and it’s frustrating.

Don’t get me wrong – this SUCKS!.  I’m angry.  I’m pissed off.  I was angry at God last night.  If He can do anything, why is all of this happening??  Well, those feelings come and then they are fleeting.  There are things that happen in the world, to many people – to young children that their whole future in front of them and it can’t be explained.  You wonder why?  Well, why not.  You just have to accept it all and move on.  So, Wednesday we will move on and pray about it all.

That’s it for now.  I have a friend that may make some posts here.  His name is Glen so if you see some other posts you’ll know.  Your prayers and support are appreciated

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Oct 01

fMRI – Prelim Results

My Story 1 Comment »

Well, the preliminary results came in last night as I met with my Neuro-oncologist.  Not so good.  My last MRI showed a slight bit of contrast as you may recall but no growth which was good news.  However, in the 60 days or so since then, it’s doubled in size.   It’s still small compared to many malignant brain tumors but it’s now behaving more aggressively.  60 days ago it was 1.2 cm x 0.7 cm.  Per this scan, it’s now 2.1 cm x 1.6cm.  There is more contrast and it’s looking higher grade than before.  We’ll perform what’s called a perfusion MRI very soon which is the best way aside from biopsy to try and determine grade.  Grade 3 tumors can behave this way – it doesn’t mean it’s higher grade. 

On the positive side of it all, there are a lot of options on the shelf.  The only option that isn’t available is partial brain radiation.  My brain has already been treated with 60Gy which is the maximum so we can’t go there.  There are other modalities of treatment however that can be used to attack the problem.  Certainly surgery is one and if that is the choice, it would be less complicated from a recovery standpoint because last time I followed the surgery with 5 weeks of radiation w/concurrent chemotherapy.  Radiation won’t be part of it if that is the option taken. 

The fMRI from yesterday also mapped what areas of motor strip in my brain control certain motor functions in relationship to the location of the brain tumor.  This technology, which the Neuroscience Institute didn’t have a year ago (they had something called “brain lab” which was sort of step down, less precise method of mapping) provides for much more precision when resecting a tumor in ensuring that neurological function is preserved.  Of course it’s brain surgery so it’s always risky but the fRMI is a huge help and a risk mitigator.  Secondly, there is Gamma Knife.  I don’t know if this is an option or not.  If traditional surgery is, this might also be an option in lieu of survery.  It’s a preferable option if it can be just as effective because it’s a non-evasive, walk-in/walk-out, same day treatment.  Most rest for a few days then get back to normal actives in a few days – slowly.

Chemotherapy will be something I’ll have to resume at some point but not now.  I have to stop the growth so that’s the first order of business.  As I said though, the previous surgery set up future surgeries.  My neurosurgeon did a few things to provide easy access to the area of the tumor so getting to the area is much easier and quicker.  The fMRI will be of great assistance.  The fact that it has grown and I have been leading a normal life the last 60 days (1 mild focal seizure) seems to tell me this growth isn’t pushing up against the motor strip (theoretically anyway) so it’s a matter of sitting down with the team and making some decisions. 

More later but we need to figure some things out.  Is it hard?  ABSOLUTELY!.  This sucks.  But we can’t do anything about it.  I worry about finances, going on leave, impact on my family and all kinds of things.  I worry about everything else more than I do myself but we have to put all of that on the side and just focus on what we can for now.  You see, we can’t have it double again.  It can’t evolve into a grade IV.  So we fight – we hammer on it in the best way possible within whatever constraints we have in life.

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