Blogging in B Minor

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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Tags:  blood brain barrier , Brain Tumor , Faith , MRI , MRI enhancement , My Story , oligoastrocytoma , primary motor cortex , seizure

My MRI was on Tuesday and I had an appointment yesterday with my Neuro-oncologist.  Overall the news was good.  The size of the tumor has not changed which is great news, again.  There has been an increase in what is called T1 shortening and mild enhancement associated with the lesion.  In layman’s terms, this means the blood-brain barrier of the cell walls have broken down somewhat - it’s a vascular change in the tumor is all.  A change - it’s irritated for some reason.  The cause?  It could be from all of the treatment over the last year.  It’s been hit with a heavy course of radiation with concurrent chemotherapy over 5 weeks.  The was preceeded by surgery which resulted in a biopsy and finally I completed 8 1/2 rounds of chemotherapy.  So this is really my first post-treatment scan.  The report indicates that this “could” be related to post-treatment changes and of course recommends continued follow-up imaging.  We are doing that anyway.

This is the first scan that they haven’t used the term stability but my doctors also didn’t say this is anything to cause major concerns - we just need to keep watching it.  And they all know me very well!  I’m the straight shooter.  Reality is all I want to hear so no holding back ever happens here. 

I’ve said it before and I will say it all the way down the road.  It’s all in God’s hands here.  We are all human and I have my own times when I can sit and reflect on what is happening in my life, our lives - think about my two kids, my wife and what all of this means to us.  But in the end, we all know that a lot of analysis and worrying isn’t very helpful to our daily lives.  So we are human - there is not some kind of power we can employ to feel “ok” about everything all the time, but you accept it - you accept your circumstances because you have to and I have learned to live with it - and so has Rachael but around the time of my scans we feel vulnerable and it’s hard not to think about it because it’s put front and center.

In a week Aidan starts soccer - every Wednesday and Friday we’ll be going to practice from 6:30 to 7:30pm.  That will be a lot of fun for us - a great Father/Son time.  He loves to get out there and kick the ball, run around and just have a great time and I think he really loves to kick the ball further than his dad.  Games every Saturday until November.  He is a competitive little boy - we’ll see how this goes but I know it will be a lot of fun - probably more for me!

That’s it for now… 

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Tags:  blood brain barrier , Brain Tumor , chemotherapy , glioma , God , MRI , MRI enhancement , oligoastrocytoma , radiation oncologist , Radiation Therapy , survivor , Temodar

I’ve talked quite a bit about supplements in the past so I thought I would post a nice picture of the supplements I take on a daily basis. These have changed since I have completed radiation of course but the documentation in the resource library will give you a run-down of everything I have done. The previous links will show you the pics. Here is a quick list - obviously these are on top of lamitil, topomax, pepcid and a few other prescriptions that I take. Suffice it to say that my daily intake of pills is ridiculous!

Starting from left to right in the picture:

1. Peppermint Complex (digestive)
2. Boswellia (frankencense - anti-inflammatory)
3. Super Antioxidants - click the link for the supplement facts on the type of Antioxindant that I take. The essentials here, among others, are selenium, zinc, N-Acetyl Cysteine, CoQ10, Grape Seed Extract.
4. One-a-Day Multi-Vitamin
5. Aloe Vera Gel - Digestive Tract
6. Temodar 140mg - Chemotherapy. For my dosing it’s 280mg a night - I’m doing 1 week on / 1 week off. I’ll continue through 12 cycles.
7. Probiotics - Acidopholis
8. Fish Oil - 1000mg - Omegas - Important for brain tumor treatment, breaking down blood brain barrier.
9. CoQ10 - additional dosing

For me and based on my research, this is what I’m doing. I’m not a doctor nor a nutritionist so I don’t advocate “copying” what I do. This is what I have been doing since I’ve gone straight on to just chemo. I have had stable scans. Can I attribut them to this regimen and the chemo? I have no idea. For all I know I could be doing none of this, including chemo and still have stable scans. However, I’m going to do eveything I can, based on my research, to make things right and fight the fight!

As an addendum, here is video called Nutritional and Herbal Strategies to Complement Conventional Brain Tumor Treatments by Jeanne Wallace, PhD, CNC. It’s about 40 minutes long and focused on diet and supplements

That’s my supplement post - been meaning to do it.

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Tags:  blood brain barrier , Brain Tumor , chemotherapy , My Story , nutrition , oligoastrocytoma , supplements