Blogging in B Minor

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’ve been a bit out of touch but for good reason.  I’ve been extremely busy, both for pleasure and tending to medical responsibilities. 

It was a very busy week last week.  On Wednesday, I had lab work to complete in prep for Avastin on Thursday but have had vision issues due to meds.  I had a co-worker take me.  I have to lower a dose of one med I believe.  Today isn’t so bad.  I’ll be discussing that today and likely lower this dose starting tonight.  I continued with physical therapy in the afternoon.  My left side (primarily my left leg) is weak so I’m continuing to work on this.  I was far too tired to work out so I opted to receive functional electrical stiumaltion which sends electrical charges into the muscle in my lower leg and down into the arch of foot – an area I cannot move at this point. 

Also on Wedneday, Aidan and I had a 7pm event at the church.  Aidan spent the previous week called Breakaway at the church.  Waterslides, arts and crafts, etc.  This was an opportunity for the kids to show parents what they did for the week.  It was great!

On Thursday, I had an Avastin infusion in the afternoon preceeded by an appointment with my oncologist.  I had another appointment after that at 4pm.  Talk about being whipped!  It doesn’t sound like much to most people but those of you who deal with living life with a GBM can relate.  I’m still working and managing all of this plus of course trying to just lead a normal life but it’s at times.  By the end of most days, I’m pretty tired.

I hope all of you in the States had a great holiday.  We had a great time although I still struggle with seizures from time to time.  I had several this weekend but hadn’t had any for a week or so which is still much better than the every other day roadblocks I ran into in the past.  I’m still on the upward climb to the 6 month peak of the post-gamma knife bell curve related to seizure activity.  It is not unexpected for the seizure activity to increase in frequency and severity so keeping them at bay the way we have is a victory in my book.

So what is next?

• Avastin Infusion on July 16th
• MRI to be scheduled prior to July 22nd
• DCVax on July 22nd

However, as I’ve mentioned so many times – the key for me is to stay in today as much as possible.  It’s not always easy but is something that I strive to do.  It’s all we have and is the only way to be present.  If I live in yesterday or tomorrow I’m no use to myself or anyone else.  Sure, I have be strategic with regard to my direction but I don’t have to stay there.  Likewise, the past is the past.  I can’t dwell on any past decisions.  The outcome of those decisions are done and they are exactly as they should’ve been.  I feel comfort in knowing this.  God knows where this is going and He is in control, not me – the doctors – no one.  This fact alone helps me each and every day.  I pray for His will for me and my family and although I may not understand it, I know that there is a higher purpose here.  Perhaps it is simply my testimony and it will help others.

I have told this story before but it’s worth repeating.  When I went through the “why me / why us” stage in the beginning of my diagnosis, there was a day that changed everything for me.  I was in the cancer center one day waiting for the elevator.  There was a little boy standing next to me with his mother waiting too.  The boy was about the same age as my son, Aidan.  I looked down at him and smiled – he smiled back with a big smile – joy in his eyes.  The absence of eye brows, eye lashes and hair made it clear that he had undergone significant chemotherapy and was battling cancer at the age of 5 or 6.  But how could a boy this age still be happy?  And how could life shuffle the deck and deal this card to him?  He hasn’t experienced anything in his life yet.  I thought to myself, “how many seasons this boy has in front of him that he may never live to see.  This is fair.  Why him?”  Well, needless to say, when applying this to my own, selfish thoughts of “why me” it changed my perspective.  “Why not me?” I thought.  What makes me immune to this?  Nothing.  Why are entire families taken out in car accidents?  Why do bad things happen to good people?  It’s hard to understand but there is a higher purpose.  It’s hard to wrap your head around and it still is for me, however, it’s easier for me to just turn it all over to God – He is in control, not me.  And, I do as much as I can to keep myself in TODAY.

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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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I went to my GP and based on everything we believe I have bronchitis or pneumonia.  Who would have thought?  NO idea about the headaches.  My blood pressure has been fine so that’s still a mystery at this point given the MRA was fine. 

To address the bronchitis I started a regimen of Zithromax on Thursday and have been down and out since then but slowly feeling better.  Today is actually the best day I’ve had in a long while and I’ll say I’m at 50% or so.   I made a decision that I just can’t keep getting up and going to work – I had to take some time to let my body rest so I took Friday, today and may also take tomorrow.  I just always keep going as I did during radiation and after my second surgery – I was back at work six weeks post-op.  I can’t keep doing it though.  My body is telling me to slow down so that’s what I’m doing.  I guess I’m stubborn – it took thinking and feeling the effects of a recurring grade 4 tumor, headaches, bronchitis and the aftermath of having a wisdom tooth extracted on top of trying to continue working for me to admit that I had to slow down!  So, some time off is good.

I have an appointment with my Neuro-Oncologist on Wednesday morning and we will determine the course of action which should be an Avastin infusion – WEDNESDAY.  I have to get back on treatment.  The clock is ticking and time is not my friend.  I am taking Valcyte but I need to be doing more – a lot more.  Also, the vaccine is there but we are working through very frustrating red tape.  Hopefully that is finished soon.

That’s it for now.  Thank you so much for all the prayers.  Everyone has been so supportive.  I think I just hit a streak of multiple issues here. 

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So we are opening a new chapter now.  To cut to the chase, the MRI is good and “ok”.  The “ok” part is there is residual tumor – not a lot but there is some at the bottom of the area shown on the film.  We believe it’s been there since surgery – it’s not recurrence at all.  The good/great news is what we suspected.  The whole area has really shrunk down.  Like I noted in the last post, that ventricle in the center of my brain that was so collapsed under the pressure of swelling is now in great shape and all of the edema present from the 10-16 scan is really shaping up – and the tumor cavity itself has collapsed upon itself which is what naturally happens if all goes well. 

So what does all of this mean?  For one, it means that I’m responding better to Avastin than I ever did to Temodar.  Temodar for one is a different drug – it hammers your bone marrow / immune system and I eventually had to come off of it after 7 months because I kept getting sick.  Secondly, it only “managed” my situation.  It didn’t grow but the tumor also didn’t shrink.  At all.  Once I came off of it for good which was around July / August I was in the OR in October as it took off from August to my scan in October.  Again, it only managed it.  So, given Avastin is good for me and I have the vaccine nearly in my hands (it will basically be a week from this Thursday), Rachael and I have decided that we will take the cocktail route – Avastin Infusions + DCVax Brain vaccine injections.  Of course the few that have been in the vaccine trial have done this by using the vaccine with Temodar but this seems counterproductive to me.  Hey, I’m just a patient, not an oncologist but if your immune system needs to be strong and Temodar tears it down, using them together as opposed to Avastin + DCVax seems like the second choice for me.  My oncologist told me there isn’t any data regarding the use of Avastin and DCVax.  Guess what, we don’t have any data on a lot of this!  Even with the other approach there have been some 200 people?!  So we are going to blue sky some of this.  I really have nothing to lose and a lot to gain.  If something goes sideways, then we will sit down and address it.  I’m still going in for MRIs and we’ll likely tighten them up to every 6 weeks to make sure we absolutely on top of this.

So, leukapheresis on Thursday for 4-5 hours, another Avastin infusion a week from today and then, God willing, the vaccine a week from this Thursday….will add updates here as usual.

Cheers,

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This is the very type of research and discovery that we all want to see – that makes us hold on, push our lives out as far as we can.  Yes, we who have GBMs have the odds stacked against us but there are a lot of advances being made so it’s important to hang in there. 

I hope everyone is ready / enjoying the Holiday Season…

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More on the DVax-Brain vaccine saga in a moment, but put shortly my slot is set to start in the first week of January which for a Glioblastoma Multiforme patient is an eternity from my surgery date of 10/15/08.  Therefore, I can’t stand around for that long and leave this untreated for that long.  There are people with GBMs that die in 3 months if they don’t treat these tumors quickly!  We had to wait 4 weeks which is standard but we are coming up on 8 weeks past that period.

So, I have started using Avastin and had my first infusion on Tuesday and I will receive an infusion every 2 weeks.  It’s an IV-based therapy that was first approved in 2004 for metastic cancers (cancers that have spread to other parts of the body).  Colon cancer and non-small cell lung cancer were the first followed by breast cancer in 2008.

Avastin has shown to be very effective in treating GBMs.  Put simply, it works by inhibiting tumor growth by blocking the formation of new blood vessels (angiogenesis) and was the first clinically available angiogenesis inhibitor in the United States.

Updated:  Here is a great article that ran in the Wall Street Journal about Avastin. The same article appeared on Virtual Trials as an embedded article on their site.  What is amazing is that last night I received an email from the editor of the Wall Street Journal health blog telling me to take down the article as an embedded article, that I am reproducing their site in my site and it’s not allowed.  Placing a link is fine but putting the site in an iframe, in spite of the fact that all of their advertisement, links and authorship credits (i.e. I’m not stealing anything) and anything else they place on the site are all in tact is not OK with them.  This is all going on while VirtualTrials.com has conducted the same practice via the link above since 11/5/08.  I posted this yesterday and received an email the same day asking that I pull it down.  Such is the ins and outs of the legal world but it was very surprising – I’m a fairly small concern here!

Here are links to both articles on the Wall Street Journal site:

Genetech Seeks FDA Nod For Avastin For Brain Cancer

Targeted Drugs Take a Crack At Brain Cancer

My insurance company has been terrific.  I have not received a single denial of coverage.  Avastin is $10K+ per infusion and I will receive one every 2 weeks.  Since the first infusion on Wednesday, I have had ZERO side effects which is great.  I went back to work on Tuesday as you know and had a normal day on Thursday and Friday so I’m thrilled.

When the vaccine is available, we can take advantage or if I am really responding well to Avastin, we can add another agent on top of Avastin and use cryogenics to preserve the vaccine and implement later.  The issue with the vaccine (the current issue – new issue, whatever you want to call it) is we didn’t know we needed a “slot” with the lab.  Apparently we do which, as I said, is January.  It’s really turned into a learn/become informed as we go situation which is unfortunate when your life is on the line.  So, we have to go on to other solutions for now.

That’s it for now.  We celebrate Christmas so the tree is in our house.  Our good friend Tom and his wife came by and he was kind enough to climb the pull-down attic ladder and retrieve our bins of decorations so we should have everything up pretty soon!  The Holidays will be great and we are really looking forward to them.

More soon…

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I haven’t posted the post-op MRI which will show you the drastic change made as a result of surgery.  Essentially, where the tumor existed before you will see a “black hole” on the MRI scan for lack of a better term.  This represents the area where the tumor previously existed and is now gone.  Here is a picture of that scan:

And you might recall the pre-op MRI image.  This image isn’t the “cloudy” image that it was before it went through the malignant transformation from a grade 3 to a 4, or better referred to as a glioblastoma multiforme. 

And here is a saggital view of the post-op MRI:

As you can see, this was a sizable resection and the tumor was sitting right on top of the motor strip so all of those fibers were taken.  It’s really a miracle that I’m walking with a cane and I’ve started walking without one here and there.  We can only credit God here – working through Dr. Zusman and pulling off what only He can pull off.  I mean, this is a 2cm x 3cm portion of my brain that is completely gone.  Motor strip tissue gone.  So, there is nothing more to say here.

Anyway, this is just a quick update.  I have a pretty busy Sunday and should have a busy week.  I am now really wanting to get back to work!  There are fears but I can’t let those drive my life (having seizures, having side effects from the vaccine).  But if I can go back to work and do chemo with concurrent radition (I went over lunch and had radiation treatments last time), I can do this. 

I’m still dealing with some ups and downs which leads to being irritable which isn’t fun for mainly my wife!  But I know I’ll get over that.  I think I’m struggling more with this one more than issues in the past.  The GBM is hard to take.  I’ve been breaking my own rule of not staying in today but I will recenter myself.  I also wanted to learn more about the vaccine and as a result of my research ran into statistics.  You have read my posts about this so I had to go back and read the post I made back some time ago called “The Median Isn’t the Message” which puts the world of stats into perspective.  So that took care of that.  I still am working on stay in today.  I’ll get it but I’ve just stumbled a bit. 

Well, more to follow this week…

Cheers,

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