Blogging in B Minor

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.

The 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.

Image Below:  How DCVax Works

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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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…

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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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My next scan was originally scheduled for October 6th but I have experienced a few focal seizures over the past several weeks that have made us decide to move this up and take a look now.  The last seizure wasn’t real severe but was enough that I took some additional meds to put it away.  This time we are doing something different, too. 

The type of imaging study that is being performed this time is an fMRI, or Functional MRI.  Subjects participating in a fMRI study are asked to lie still and are usually restrained with soft pads to prevent small motions from disturbing measurements. This really isn’t any different from a standard MRI – you’re always given pads around your head and arms.  Anyway, the primary difference with an fMRI study as compared to a standard MRI (both can last 1-2 hours – how fun to be in a “tube” that long, huh!) is subjects may view movies, hear sounds, smell odors, perform cognitive tasks such as memorization or imagination or in my case, press a few buttons and perform other motor function tasks using my left-side (recall I have a right-frontal brain tumor – deficits are contralateral so we want to see impact to the left side).

So, put simply without getting into a lot of scientific jargon, the goal of this is to “map” more or less the areas in and around the tumor that are directly affecting certain motor functions (the movement of my left shoulder, or knee, or fingers for example).  When we know that, we can determine what areas of the tumor could be relatively safe to debulk with limited neurological deficits – at least in theory.  Nothing is without risk.  After all, this is brain surgery.  So, we’re aren’t preparing for surgery here at all but given the seizures we need to see what is going on.  We’ve been watching it every 60 days so this time we just moved it up a bit – no big deal.   

Here is a picture of an fMRI machine to give you an idea of the environment.  Again, getting tubed an hour or two (and sitting absolutley still) is a chore, but I have done ok with it so the technicians have said.

And guess what?  I can’t do anything about what is going on, can I?  Nope.  I pray for the best outcome.  We know that God is in the middle of our lives – Rachael, Aidan (6) and Keegan (1).  It’s certainly hard not to let physical symptoms get to you – I won’t lie.  But when they do, you just have to keep rolling along.

I’ll post results here when I can.  As I mentioned before – the lack of posts means I’m doing good!  I’m enjoying life.  Soccer has been a blast with Aidan.  Being involved, running around a field in soccer clothes (I used to play competitively) and playing with him and all of his team, helping with the coaching and teaching the kids – what a great experience and just a few months ago I was on chemotherapy. 

More in a day or two….

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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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I was out on a few internet boards this morning and found an interesting post that posed the question “what constitutes a brain tumor survivor?” The discussion centered around whether or not a “survivor” was dependent upon having met some type of milestone in recovery, whether that be measured in time since surgery, clean MRI scans, completion of chemo, a certain quality of life, etc. Without passing any judgement, because I really don’t – everyone is entitled to ask questions, but I was a little bit surprised to see that post. It could be just me, but I firmly believe (and I said so in my reply to this post) that a brain tumor survivor is a survivor from the day they are diagnosed. If that person wants to make the choice to view themselves as such is of course up to them, but the premise is simple to justify and completely appropriate in my humble opinion.

Put it this way. If you are living with something that threatens your life, you are surviving. If you are employing treatment modalities to fight (survive) for your life and, as we all are trying to do as suvivors, maintain the highest quality of life that we can, you are surviving. In many cases we are thriving and this is a blessing. Let’s put it another way. Suppose you are shipwrecked and you are the only one on the beach. You feel completely alone (as many of us do the day we are diagnosed). Are we dead on the beach? Let’s say that being shipwrecked is being told we have a tumor and sitting on the beach is our circumstances. We could choose to view this whole situation as the end, just as we could our brain tumor diagnosis. Again, are we dead? No. We can go climb trees, find coconuts, food, shelter (i.e. treatments) and survive – right from day #1. My point is we ARE survivors, from the beginning. There is no magic milestone. There is no graduation ceremony at a year or six months that we attend where we get a diploma that says we now have a Masters Degree in Brain Tumor Survivorology. So you walk with a cane? Ok. So your vision is impaired? You have major neurological deficits. We are survivors. Period. It’s all in God’s hands anyway and as survivors, we can be examples for others. There may be people in your very family that will have the fight of their life 10 or 20 years from now and when they do, they will remember – yes, they will know how you are facing your adversity, with courage, strength and hope. And that may be the very thing – and could be the only thing, that pulls them through. Think about that.

We live with brain tumors and we live with zest – we try to live each day, for each day. The past doesn’t matter. It’s gone. The future doesn’t matter either. I had to plan out some things, and I’ve talked about that in posts. As a husband with children, I have everything lined up correctly so if something does happen to me things are handled. Other than that, we live in today and we are survivors and in many cases we thrive…

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I think I typically keep things pretty well in perspective considering what I have happening in my life. I’m speaking of just my health, prognosis and these aspects of my life. I had some pretty dark days and nights in the beginning but I came to accept my circumstances and I really try to use this trial in my life in positive ways – as a testimony to others that we can get through anything, even if we are facing a prognosis as what most view as bleak as a malignant brain tumor. I volunteer through the NBTF, am active with the NABTC and of course field a significant amount of email through my site here. I think it’s important to channel all of this into positive energy – there is a plan behind all of this. However, it’s easy to get caught up in flawed thinking.

I found myself doing exactly that over the past few days – dwelling on yesterday and worrying about tomorrow. Anytime I’m not in today, I know I’m on a slippery slope. I have posts on this blog about how I cope, about how I avoid this! But how did I learn how not to do this? By finding myself in this rut and getting myself out of it, over and over – mostly at the onset of this journey. I think what triggered a lot of this over the past days certainly was Senator Kennedy’s diagnosis. I know better. The press just lays everything out in the bleakest of terms and they are so uneducated (to no fault of their own) regarding brain tumors and other subjects that are suddenly thrust into the spotlight. The story comes out of nowhere and they start boning up on the subject, contacting experts, interviewing everyone. Immediately, he’s facing a death sentence and gliomas are all grade 4 tumors! In all fairness, it wasn’t quite this bad but it pretty much was the press painting a picture of “you have malignant brain tumor, you will die in a few years tops”. I will say that with Senator Kennedy, I could pretty much ascertain that he was facing a GBM (glioblastoma multiforme or grade 4 glioma) when I heard certain statements such as “extremely aggressive” and other give aways. A grade 4 is much different than what I have, a grade 3 although some will certainly argue that all grade 3 tumors will eventually evolve into a grade 4. Who really knows! However, all of this stirred the pot for me and I started throwing all of the thoughts I have had, factual but water under the bridge, about my case back on to my shoulders all over again.

I have a grade 3 – a craniotomy was performed and 0% was resected because of location. I have not had any shrinkage – stable is good but no shrinkage. 3-5 years median survival rate. What about my wife, my kids. Are the assets I have built over time enough – life insurance, pension plans I have, equity in our property and other assets – what if I have to stop working? Disability? My health insurance – conversion to COBRA – then what? And the list goes on. I hammered myself again! I have been through this. And then, I came back down to earth and said, “Mark, you have been through this and not only that, you have a binder in your firesafe that goes through all of this – it covers every scenario from active treatment to advanced illness, walking away from work to my death and what my family would do – it lays out steps – it has a “document locator” that spells out where where everything is”. I reminded myself that my financial advisor has a copy of all of this in his possession. I have a will. I have an advance health care directive.  I also have the entire world of statistics in perspective, thus my post some time ago about the amazing piece called The Median Isn’t The Message.  I have all of the other legal snafus tied up. And most of all, I have God. I have my maker who is in FULL control of what happens to me. This is not my fight, this is his but I need to stand and deliver.

So here I am, back down to earth and back to where I typically am – living in today, not yesterday or tomorrow and enjoying my family and my life. You see, as I have posted before, if I am not here today and I am mired in the mess above, I am missing out on everything – and I am missing out on what I believe God wants me to enjoy while I am here! Will I do this again – find myself wandering? I am sure I will! However, I have learned how unproductive this is. I also know we are all human – and I know that anyone facing a terminal illness – who has had a “number” waved in front of their face (which I have chosen to ignore!) will have times of dispair. It’s up to us to fight back, to realize that all any of have is today, right now, this moment. My brain tumor may not even be the cause of my demise. Any of us could walk out the front door today and have any number of circumstances alter our lives forever. That is why it’s important to live every moment to the fullest.

Yesterday? It’s gone. Tomorrow – it’ll come but today is what we have. I will enjoy it and if I fall into this thinking, I know what I need to do – and each time it does happen, I learn a little bit more about myself and I get a little bit better at avoiding it.

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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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