I completely forgot to provide an update regarding my MRI! It was good news. No new lesions and the areas that were enhancing in the last two scans have diminished in this scan. Everything else is stable. Less mass effect (swelling). I also haven’t had any seizures for the past several weeks.

Aside from severe shoulder pain due to left-side weakness and the typical Temodar quirks I’m doing ok. I just think the cumulative effects of radiation (which includes the two gamma knife treatments that boosted my original dose of 60Gy of radiation by 22 Gy and 16Gy respectively) have just caught up to me a bit – radiation recall as it were but I am blessed. I am 3 years out from my diagnosis and for that I am grateful

Sometimes I think we all just get immersed in treatment to a deeper degree out of necessity. For me those deeper dives if you will are difficult when they come in sucession as they have over the past few months. I know for you other survivors reading you can relate to this and “get it”.

I also know that, for the most part, dark clouds clear in time and the sun breaks through again. It may be brief but it might just be enough at that time to keep me rolling.

To those I haven’t been able to get back with yet, I’m sorry! Especially Ben!! I will be in touch.

God bless,

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I had an MRI on Thursday which was 30 days post-gamma knife. As you might recall, a second tumor appeared 30 days ago and I immediately was scheduled for gamma knife which was a great way to address the problem. I really prayed for was that the original tumor resection site was stable and that the Gamma knife treatment directed at the new tumor would essentially destroy most of the tumor tissue. Of course the risk continues to be centered around motor function, left-side weakness and seizures.

First, here is an image of the scan (click for a larger view):

The yellow arrow represents the original tumor. The report indicates that this is stable which is great news. The red arrows point to the new tumor location and as you can see it is now hollow to spare you the medical jargon. The only possible issue that is something to potentially be dealt with in the future is scar tissue from the recent Gamma knife procedure. Sometimes Gamma knife can result in what’s called necrosis, or scar tissue. This can irritate areas of the brain and result in brain swelling. If frequent headaches result, sometimes surgery is necessary but I am far away from anything like that, so all in all this procedure went well and I am very happy with the scan.

Moving forward the plan is going to be pretty aggressive. I have three doses of DCVax left.  We’re going to administer those over the next six weeks, two weeks apart. After the first two doses I’m going to start back up on avastin.  I will likely go back onVP-16 which has obviously done the job over the last 30 days in stabilizing the original tumor. I’ll also continue taking Valcyte. I am like a drugstore cowboy! I have an entire cabinet in the kitchen dedicated to my medications. It’s unbelievable.

Today is good. I’ve been very tired due to family and friends being in town the last three weeks so this weekend is the weekend to relax and catch up with things around the house.

Thanks to everyone for all your prayers around this latest MRI. They really mean a lot to us.

God bless

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A very quick post and some pics regarding today’s Gamma Knife surgery.  First, everthing went perfectly and it was successfully completed today.  A long day it was.  We were there at 7:30am and left at 2:00pm. I will get into more details later about the process (this is #2 for me) I thought it would be helpful for some to see pictures of the actual prep involved in Gamma Knife - the prep consumes most of time. 

Warning for the squeamish – some of these pics may not be for you.  After all, they are screwing a device to my head to render it immobile while receiving high dose precision radiation from the machine:

Here a SimpleViewer Flash gallery should be displayed. Click here to open the post in your browser to see the gallery.

More to come later but wanted to quickly thank everyone for all the prayers.

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Yesterday I had an MRI in the morning that was scheduled as a 30 day follow-up to my last MRI. The image to the left is the result. The yellow arrow represents the existing tumor cavity left over from my second surgery. The red arrow represents a new tumor that was found during the study. There’s no way to understand the grade of the second tumor based solely on MRI but presumably it’s also GBM and originated from the initial tumor. These tumors are infiltrative by nature and grow like weeds so you can stamp one area out but they have fingers and can pop up somewhere else. So much for my first day of being retired!

I always remember, there is nothing that can happen at this point that we can’t handle and there is always a solution that we can pursue. It’s never easy but we find our way. So once again, the wheels of medicine are often running. The first thought here is Gamma Knife and that is what we are going to do. It’s scheduled for Thursday morning. I have a meeting with my neurosurgeon tomorrow just to discuss the game plan and any deficits/risks of the process. The second tumor appears to be on the motor strip as well but in the specific area that controls my left hand. I had a seizure on Sunday morning and it was a little different than previous seizures in that my left hand was pulled into a fist and I started pumping my fist repeatedly. This correlates with the location of the new lesion.  I had Gamma Knife in 3/08 so this will be #2

As I have more information I’ll post it here. Thanks for all the prayers and support.

God bless,

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I have had a lot going on lately in the middle of the holidays regarding medical tests and treatment options. As I’ve written lately, I’ve continued to lose function in my left arm and hand.  This has been concerning to me considering that the decline has been fairly rapid meaning over the last 90 days.  Since I got out of the hospital when I was treated for the cold I had, I started back on avastin and two weeks ago Thursday I had a DC VAX injection.  I came off of Valcyte for a period of time since my blood counts were very low and I’ve started back on that as well. 

Yesterday morning I had an MRI.  This MRI showed increased enhancement around the tumor. It’s unclear at this point whether or not this is tumor growth, a stroke that has occurred, Gamma Knife continuing to kill cancer cells in the area of the motor strip which is resulting in neurological deficits or edema. Regardless, I will start on a new chemotherapy next week called carboplatin.  This is an IV-based chemo that has similar side effects as temodar.  I will continue with DC VAX, Valcyte, and now carboplatin.  Today, I am meeting with my neurosurgeon and we will discuss if there any options at all surgically. My guess is there are no options at this point but there could be later. Any surgical resection well further involved the motor strip and the likely result will be a complete loss of the left side of my body.  If that becomes necessary later in the choice when faced with this paralysis on the left side versus succumbing to this disease obviously the decision is simple.  However at this point if there are other treatment modalities that can keep the tumor at bay than that is the obvious and preferred course to take.  I will have input from neurosurgical point of view later and we will start putting the picture together.

It is somewhat like being at the beginning again. If you’ve kept up with the blog from the beginning you might recall that I had a decision to make between watching and waiting or performing surgery. After obtaining three opinions I went forward with surgery. In this instance I will likely reach out and obtain a second opinion from the University of California San Francisco. For anyone embarking on this journey I highly recommend that you do the same. It’s not a pot shot at your neurosurgeon. You’re just being your own advocate and ensuring that you’re making the most educated decision that you can.  After all if you are facing the prospect of being paralyzed, you best be as well-informed as possible. I believe I am far from a scenario however we are prepared for anything as we have been all along. We have had enough ups and downs over the last three years to know that anything can change on a dime.  Honestly, avoiding surgery is the goal and every neurosurgeon’s goal is to increase neurological function, not decrease it. That is what’s difficult about my case and other people’s cases. As is the case with many brain tumor survivors, I came from a position of being a high functioning individual.  I operated in a high functioning professional environment, lived a good life, could run, throw a ball to my son, etc. and I’m losing function (I can still hammer a soccer ball to Aidan).  Some people come from having minimal functionality because of their deficits and surgery actually improves their situation.

I will update my blog when I have more information but it may take a day or two. Typing is the challenge and I’m experimenting with some dictation software which is a huge help.

Best to all of you.

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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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In a word, WOW.  If you’ve been reading my blog for some time, you know that we’ve had our share of not so positve news over the past few years.  We’ve learned to live each day (and are still learning) in the face of this disease.  However, this scan shows that the power of prayer, advances in experimental treatments and the tenacity of researchers, doctors and others in the medical field can yield results.

 I will cut to the chase first.  Here is a shot of what was on the monitor in clinic when we talked. 

From left to right, we have the March 30th scan (2 weeks post Gamma Knife), the May 7th scan and then Monday’s scan, July 20th.  Look at all of the enhancement in the first and second scans.  The second, however, does show some evidence that some cells are dying in the center of the tumor.  Monday’s scan, however, is amazing.  No edema, no mass effect, enhancement has significantly decreased and the profusion portion of the test which I will get to is equally telling.  Needless to say, I’m VERY pleased with this result.  We have not had a report showing a decrease at all since this started – only stable or further enhancement.  What we have done here is hammered this tumor with an army.  There is nothing more satisfying in this setting than to see this tumor get pummeled!

Now for some additional details:

Again, March, May then Monday’s scan.  What a blessing.  This tumor, a grade 4 GBM is dying off at this point in time.  That is the situation TODAY – but see my previous post.  Let’s stay grounded here.

Finally – a test that is very telling is called a Profusion Test.  In basic terms, it shows the blood flow in and out of a tumor.  It looks like a heat map.  High blood flow is shown by yellow/orange and red colors – the closer to red the higher the blood flow.  The more blood flow a tumor receives, the more it can grow.  Tumors depend on high blood flow.  If the blood flow is low or cut off, this can help kill a tumor.  Many chemotherapies for primary brain tumors focus on cutting off the blood supply.    The vaccine as you’ve attacks the malignant cells and kills them.

Check out the profusion image:

The circle on the left side surrounds my GBM.  Take note of the color and the legend on the left.  The profusion test shows DARK blue in the area of the tumor.  Another sign that my treatment is effective.

Finally, I decided this time I would just put the report up here so a) readers could see what an MRI report looks like if you haven’t seen one before and b) it’s easier to lay it out rather than repeat everything.  I just blocked out personal info.  What you should pay attention to is the “Findings” and particularly the “IMPRESSION” portion of the report.

It may be a little hard to read so my apoligies.  In summary this is great.  There is also no evidence of any grade 4 cells moving into any other areas of my brain.  I can’t pray or ask for anything better than this.  And, as always, I’m prepared for whatever comes my way.  It’s about today and I do the best I can to stay here.  I slip up – but TODAY is a good day and I have to thank God for this gift of healing.

 I will be taking 2 weeks off from Avastin.  I have been taking Avastin alone along with Thalamid.  I failed Avastin in the past – it just kept it stable but I had a recurrence in February that led to the vaccine and gamma knife in March.  I also failed Avastin + CPT-11.  Again, stability but no real progress.  I then started vaccine therapy (DCVax).  I believe these results are / can be attributed to DCVax.  I am also going to back off of Thalamid.  It makes me very tired and “loopy”.  It’s a slight risk but the next scan will tells us whether it’s been any factor at all in my treatment.  At the next scan we will have more info.  I had another series of vaccine shots yesterday so I will keep moving on.

I want to thank everyone who is praying.  This blog is my way of giving back and I can’t thank everyone enough for your continued prayers.  I’ve said that before and I hope everyone realizes that by praying for each other and creating a community of survivors, caregivers and friends who have this in common, we can find some sense of peace in sharing our stories.

I continue to urge you to use the comments section of posts to relate your experiences for everyone to see/read.  It’s helpful for everyone.

More to come….

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Real quick but this really illustrates how much we really need to just stay in today.  My own conjecture about the increased frequency of my seizures, including brain swelling, possible growth, etc never include “stability”.  However, that is what the final report says – stable.  Additionally, the edema is reduced. 

This is a victory of sorts!  In spite of the recurrence, the working theory is that cells are dying off and that’s leading to irritation of the tumor and seizures – the gamma knife surgery is a large part of this but so is the vaccine perhaps.

As far as no change on the MRI, we don’t know the reason for the stability but DCVax has to be considered.  Only time will tell because the gamma knife surgery was only several months ago as well and the full effects/results will take more time to reveal themselves. 

I’m going to go on Avastin again to keep hitting it.  This shouldn’t be too bad though.   I’ve had it before.  My biggest fight with Avastin is staying as hydrated as I need to be – you have to drink water/fluids like a fish!

That’s it – Happy Mother’s Day to the mom’s out there….

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I should hear back from my Neurosurgeon and Neuro-Oncologist today.  I left a message with both.  I thought more about the seizures and I think that because I’m becoming more symptomatic pretty quickly (3 focal seizures in a week), waiting until the end of May for an MRI is a little too long for my comfort level and perhaps we should do one now.  This is obviously an aggressive tumor and in spite of the fact we folded in gamma knife in March and may assume this took care of growth at that time, the fact is we don’t know whether the seizures are being brought on by growth, brain swelling, damage to the motor strip from the gamma knife process (not surprising if so), etc.  I think we need to do it though.  With the recurrence that happened 4 months after my resection in October and “most” recurrences after the first becoming sooner and sooner in elapsed time, I want to stay totally on top of this.   

I’ve been thinking over the last few days about how the so-called “economic down-turn” (which is government speak for recession) has brought some families closer together and taken us back to some core values.  I know for us, it’s built on what naturally happens when fighting a brain tumor and what existed before. 

Most families come together after the diagnosis and are more judicious about how, where and with whom they spend their time.  I think coupling that with the economy is creating more closeness – or it creates the opportunity.  More people are spending time at home – not eating out as much or shopping.  I don’t think there is anyone I know who hasn’t made some type of change to their financial matters.  We refinanced our home.  We found a better deal on cable TV.  But this tightening of the belt as it were is something that can be a positive.  It’s the media that creates so much fear and hysteria about things.  Yes, everyone has to be careful right now and some are in very hard times – and I pray daily about the problem but God will prevail.  In the media, however, the world is going end, right?  The same message was sent a few weeks ago with the swine flu – pandemic!  Remember SARs?  Who can forget the bird flu – the list goes on.   I’m not suggesting at all that these didn’t  effect anyone – they did and it was awful – just like brain tumors and other diseases they are of earthly creation.  The point is the media drives fear and panic.

I find that us the most difficult issue is when I’m not feeling great – it puts a lot of pressure on Rachael and she feels the burden of the evening or weekend day upon her.  Lately I’ve felt pretty good with the exception of the seizures which can put me out of condition for awhile.  I think it’s hard to support each other sometimes when two people are in survival mode at certain times.  We honestly struggle with this.  But, on the other side of the coin (the shiny side!), I’ve been outside with my kids in our backyard playing catch with my older son.  I’ve been able to play with our youngest and I’ve been spending a lot of time with Aidan at night reading books and just talking.

On a funny note, the other night Aidan needed to get out of the bath.  He had his hair and shoulders so lathered up it looked like shaving cream!  But nowhere else – just on his head and shoulders.  Rach asked, “Aidan, why do you have so much so soap in your hair and on your shoulders?”.  Aidan said “Well, the bottle over there says Head AND Shoulders so I want to make sure I do it right.”  Kids can make you laugh – you just can’t do it in front of them sometimes.

Random post.  Don’t forget Mother’s Day on Sunday!!

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As I mentioned I had an MRA to try and find out why I’m having these headaches.  The test was negative – everything looks perfect.  One of the images that the MRA produced is shown here – pretty fascinating.  We were just looking to seem if we could find a blood clot, embolism or some other reason why I would be having such awful headaches but everything looks fine.  The imaging is amazing though. 

It’s too bad that everyone can’t just get scanned.  Not this type but just an MRI.  There is a program in NYC – a mobile MRI unit that drives around and allows volunteers to take advantage of technology.  I can’t remember the stats that I read, but it was staggering to learn that just normal people going about their daily business were walking around with brain tumors

Anyway, now that these tests have swiped away this theory, I spoke to my doctors after getting lab work done and we believe there has to be an infectious process going on somewhere.  My cell counts are ok.  I don’t have a temperature at all but I’ve had the chills and the fatigue has been terrible.  Another observation is my blood pressure (diastolic) has steadily increased since I’ve been on Avastin.  THe last time it was taken it was around 90.  So, the headaches could be due to hypertension.  Lots of moving parts here.

I have an appointment with my general practioner today – perhaps some antibiotics and a review of everything will take care of this.  For now, though, I have to wait on more treatment.  ANother reason is my creatine levels are off the chart – 330, the highest they’ve ever been so my kidneys are screaming at me!!  I can solve this by drinking a lot more which is what I will do.  I usually drink a 32oz bottle of water at work and then a few glasses at home but it’s just not enough, particularly on Avastin.

More later.

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