Blogging in B Minor

Finally a date.  I think we are nearing the end of the vaccine chronicles….

After all of the saga with the vaccine, I have at least a date for the leukapheresis process that is the direct pre-cursor to having the vaccine.  January 8th – next week.  Of course, in keeping with our story, I still have to squeeze the time and location out of of these folks but these are minor details at this point, right?  Once this little 4 hour blood-filtering process is completed (it’s kind of like running your blood through a strainer and what’s left are dendric cells), the cells are sent to the lab, combined with the tumor tissue that they so desparately needed via overnight courier a day after my surgery on October 15th (quick math = that’s about 10 weeks ago) and voilà, I have a cutting edge, experimental phase 1/2 vaccine in my hands.  Anyone picture that scene from Dr. Jekyl and Mr. Hyde in the lab with smoke emanating from test tubes??  Sometimes this world feels a little like that.  It’s certainly not some potion but these are uncharted waters to a large extent.  For the same reason, it serves as a key opportunity

The plan: 

• Today, 12/30 I have another Avastin infusion assuming my blood work from yesterday all comes back fine – I’m assuming it will be fine.
• On Saturday, 1/3/09, I have an MRI downtown which is in advance of the leukapheresis and manufacturing of the vaccine.  This is a regularly scheduled MRI anyway but we also need to see if a) the Avastin is effective and b) if any growth has taken place.
• On Tuesday, January 8th, I will have the leukapheresis carried out.  By the way, you know how acronyms plague every industry and subsequently (and quite innocently) seep out during discussions with customers and in this case patients?  I was talking with the doctor handling this and she said “well, after you’ve been “pheresed….”.  I said “what?!”  What does that mean – what are you doing to me?!  I was of course joking but doesn’t that sound odd?  It sounds like they’re going to do something quite unpleasant to you. 
• The cells taken from my body after I’ve been “pheresed” will be sent to the lab and I will have the vaccine about a week later, ending the saga 11 weeks or so after my surgery. 
• DECISION POINT:  Here is the big decision
  • if Avastin is really effective, it’s easy – don’t fix what isn’t broken and use cryogenics to freeze the vaccine for potention later use.  Keep going and perhaps add a chemo agent – my neuro-oncologist has brought up a few that I’ve mentioned in previous posts. 
  • If Avastin is just keeping things managed, this is the most difficult decision.  Do you roll the dice?  I suppose you are in the same position as you are after surgery so we go with the vaccine.  We’ll know.  God will guide us.
  • If Avastin has failed, the vaccine is out and so is Avastin.  So we again freeze the vaccine and look for another treatment option.

A lot to go through here in the short term but we have a lot of experience in making these decisions and God is with us.  The decisions just become more significant and more difficult as we move down this road.

The last item I thought I’d cover was my son Aidan and something he said that I thought was amazing.  He spends the day with his Mom when he gets out of school, etc. so I always put him to bed and it’s a good way for the two of us to have some quality time.  We usually read a story and then he always asks “can we talk?”  Of course we can I reply and he always smiles and says “ok, what do you want to talk about?”.  We come up with a topic and talk it out.  Last night we were talking and I asked him, “Aidan, if you could anything in the world you wanted to, what would you do?  And I mean anything – what would it be??”  He asked “anything???” and I said “yes”.  Aidan thought for a minute and then said “I would ask Jesus into my heart.” I said “Aidan, that’s great but I know you’ve already done that so think of all of the other things and try something else because Jesus is already in your heart” and Aidan thought for a minute then said “I would just choose that again because it makes me feel joy and I would want to feel the joy over again.”  Then he said “What would you do Dad?” 

He’s a lot wiser than I am and far beyond his years at only the age of 6.

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I failed to mention through all of my updates that the “driving test” went fine.  She said she couldn’t tell me the final decision as it wasn’t in her hands but that as far as she was concerned I had a “great drive”.  She said out of 25 I missed 4 and they sounded very petty – 2 of them were for not properly “scanning” the intersection and another was a limited line in a residential area (I rounded a corner and came to a stop).  Since I saw elderly folks with O2 tanks and walkers coming to Window 13 to take their tests, I think I’ll be ok.  I felt bad for some of of those folks.  I was talking to the DMV agent and asked if they just pull licenses on the spot and she said absolutely!  Most of time – with elderly people.  So, at some point I will be notified by mail as to the disposition of my driver’s license.  Hopefully this is the end of the saga.

Today is better than yesterday.  No seizures.  I do wonder about the seizures.  They are contradictory to my progress in physical therapy.  Physical therapy improvements indicate Avastin is reducing swelling, resolving tumor evolution and otherwise improving the situation.  Seizures could be an indication otherwise.  But, they can also happen regardless.  The only real proof is in imaging studies and I have an MRI w/wo set up for a week from today.  This one is being requested by the Hematology office that I have been referred to that will be handling the vaccine and other facets of that end of the treatment so it may take me more time to get the results as I don’t have solid connections in that office yet.  I will probably be able to go through my Neurosurgeon’s office though – unless it’s negative in which case the case manager won’t want to say anything outside the presence of a doctor.

The MRI is being ordered to ensure there is no growth prior to moving on the vaccine (we’re making the assumption we will be doing that).  If there is, the vaccine is out.  There is no reason to go through the whole process if there is growth based on all of our information.

Other than that, back to work Monday for a short week with New Year’s Day coming.

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Today I have the pleasure of feeling like I’m sixteen years old again and driving around with a DMV examiner sitting in my car, clipboard in hand and watching my every move to determine whether or not it’s safe for me to be on the road with the rest of the population.  My toes on my left foot are paralyzed – this could present grave danger.  Well, in all seriousness, I do understand the situation so it’s fine with me. 

I was thinking about it and figured it will be a snap but after second-guessing myself, I decided to go out to youtube and search on CA DMV Road Test or something like that.  Turns out they have a Top 10 Reasons You Fail Video list!  It’s not so bad – silly things but errors we all make every day as burned-in drivers.  Take a lane change for example - according to the DMV, if you don’t a) turn on your signal, b) check your mirrors (plural – rear view and side), and c) check you blind spot, you have commited the dreaded CRITICAL error.  Regardless of how well you do before or after this tragic error in judgment, you’ve completely blown it my friend.  Game over.  Done.  You have FAILED the test.  Huh.  I guess it’s not that easy after all?  Do you think I might be able to just tell them I had brain surgery so I left one of the steps out accidentally and I’m sorry about that?!  Probably not I suppose.

Quite seriously, I was astonished looking at this stuff because after decades of driving you just don’t think about everything in the way they really want you to.  So, back to the drawing board.  And, I don’t have a front license plate on my car but the list on the site says you better have one.  I’ll find it I hope!

The avastin seems to really be showing some results.  After my first infusion, I had physical therapy a few days later and we noticed that my gait was more improved.  The session after that showed even more substantial improvement – improved heel striking, less rolling, etc.  I’m walking more without the brace around the house and over the last week left the cane at home.  That’s quite a change in a short time.  My physical therapy appointment yesterday was also very good.  I’m just making steady progress and working hard but I can now see that since I’ve started the avastin infusions, there has been significant improvement at a much faster pace.  

As I posted previously, I had another infusion last week and will have another on the 30th.  My oncologist said that if you are going to respond it will happen quickly – you will show improvement in ways such as this.   When she first asked me how I felt after the first infusion I said fine – she asked me if I felt anything at all and I said “no?”.  I thought she was referring to side effects – she was fishing for this info. 

This is great news but also means we will have some decisions to make here soon.  Since it appears I am responding so well to avastin, do you try to fix what isn’t broken?  Probably not – meaning, do we pull avastin in favor of the vaccine.  I think everyone would agree that we should not do that.  So, the strategy would be to carry out the leukapheresis and use cryogenics to freeze this indefinitely if necessary.  If Avastin fails, we can pull the vaccine and implement it – for those of you that have been reading you are familiar with this whole strategy.

That is really all for now.  Today is Driving Ms. Daisy then I’ll finish up work tomorrow, hopefully with a driver’s license!  We’ll close the office around Noon so it will be an easy day.  I’ll be off for the holiday until Monday then it’s time for football.

The best Bowl game this year?  The ROSE BOWL!  USC vs. Penn State.  My prediction?  USC 31 Penn State 14.  That one is for you John Estes because I know you will be watching

For the record, I think USC would hammer the Sooners or Gators.  Too bad we can’t see one of those games happen – why can’t they come up with a playoff system?  Could you imagine if at the end of the NBA season a bunch of computers decided that the Lakers and Suns should play for the “NBA Championship” and left out every other team in the NBA??  All based on a bunch of metrics like strength of schedule, points for, against, their opponents’ opponents?  I could write an entire post about this, put up a system they could use, etc. etc. but alas, no time. 

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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Like everyone, we are in the middle of trying to get everything wrapped up for the holidays.  It’s a bit more difficult this year – I am so used to just flying up on a ladder and putting lights up and getting things down from the attic but with the deficit in my left leg I just can’t do some of the things I used to do before.  Par for the course.

We did get the cards ready and decided on the do it yourself picture this year and it came out I think as best as it could – we couldn’t get Keegan to smile as you can see – but he’s 17 months old and wasn’t in a great mood.  The picture was embedded on a great background which I didn’t include here – just the picture so at least this part is done.

While we were running around, I also snapped this picture of Rachael and the boys.  This was all over at a new shopping mall called The Fountains in Roseville – it’s across from a huge mall called the Galleria but a real nice place to walk around.  Of course you’re wondering where I am!  Well in picture on I’m holding on to Keegan’s left leg firmly so he didn’t squirm away and I took the second picture.  Things blew apart shortly after what ended up being the “Holiday” picture so we got some coffee and made our way out of there.  It was a lot of fun though in spite of the challenge it is to take pictures with kids.  Too bad Keegan wasn’t as thrilled as he was in the picture with Mom!  We probably should have brought someone along and tried for a family shot but oh well.

So, this week brings my second Avastin infusion.  That will be on Tuesday.  I also now know I’m slotted for the first week in January for the vaccine.  It’s been a winding road with that as you know.  So, we’ll move forward with Avastin and when it’s time for the leukapheresis which is the last step before the lab makes the vaccine I’ll move forward.   It’s about $2K and I’m not sure if insurance will cover it but it really doesn’t matter much – we’ve got to move forward with this if it makes sense.  Worst case, the Avastin is doing it’s job, which means it’s shrinking the area where the resection took place and any residual disease and we keep using it and introduce another chemotherapy such as irinotecan or accutane.  Accutane has been used for severe acne but has been used successfully for brain tumors in concert with Avastin.

So far I’ve been fine with the Avastin – no sign of side effects.  My med levels seem to be ok as well.  Not much in the way of vertigo symptoms.  I’m watching out for break-through seizures at this point though.

Alternative Medicine

I’ve just started looking into some interesting information I obtained through the Annie Appleseed Project.  My brother is connected to an Executive at the Love Hope Strength Foundation and she referred me to a board member at the AAP.  To make a long story short, they are proponents of the work  of Stanislaw R. Burzynski, MD, PhD at the Burzynski Clinic.  He has some interesting approaches involving antineoplastons.

She forwarded me a lot of information so I’m just started to go through it and I’m very grateful for the info.  I don’t have much else to share at this point but will fill you in as I learn more.  Not even sure if it’s something I will pursue but I will look at anything and everything.

Cheers,

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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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