Blogging in B Minor

POST UPDATE:  Infusion moved to next Monday, January 19th.  I received a call and Northwest Biotherapeutics has to confirm that they received enough cells.  Therefore, if we start Irinotecan today, we could hammer the marrow and cells and if we needed to take more we wouldn’t take very good cells.  So, once again, why didn’t anyone know about this!  I am just frustrated.  I finally felt like they were getting on top of this and unfortunately I can’t get do anything about this.  I can’t get on the phone and call Northwest.  They won’t give me the protocol (it’s priviledged and confidential).  I can’t force people to hold conference calls and I have too much time invested to jump ship – and this isn’t enough frankly to force something like that.  But I am very frustrated because this not only delays Irinotecan but also pushes my planned Avastin treatment out a week so it will be 3 weeks between treatments – again, not good for a GBM patient!  Pray and turn it over is all I can do.

== END OF UPDATE ==

Today will be a long day but will also allow me to walk through a new experience which is always good.  As with anything new, particularly chemo, surgery, etc, there is a certain level of anxiety that comes along with it.  I remember when I first started on Temodar, or radiation, or my first craniotomy – I read about the side effects, the impact on one’s body, etc and felt anxiety as most do.  So, with Irinotecan (or CPT-11), I do feel some anxiety but for me it’s mainly due to a few things.  1) I’m moving from an “oral” chemo (Temodar) to IV-based and it’s much more potent.  The primary side effect is documented as extreme immuno-suppresion.  Well, like any drug, they have to document the worst-case.  Gastro-intestinal issues are also a big problem as they are with Temodar (I didn’t experience any – I just made sure I had a routine that worked for me so it may come down to that.  My other concern and it’s the most significant is 2) the impact this will have on my use of the DCVax vaccine that will be available at the beginning of February.  The same lab work parameters that I must stay within to use DCVax were never breached while I was on Temodar so that makes me feel more comfortable but this is a more potent agent. 

So, stay in today!  Today is a long day however.  My schedule is as follows:

1. Working from 6:30am until about 11:00am
2. Arrive at the Infusion Center and undergo the Avastin + Irinotecan infusion from approximately 11:30 until 1:00pm
3. I have a bit of a break which will be great – grab a bite to eat and then it’s off to the Hematologist’s office (the doctors who will be handling the vaccine portion of my treatment) for a 2:30pm appointment.  This appointment will likely take an hour so I will get out of there at 3:30pm.
4. Leave there and head over to my Neuro-Oncologist’s office for a 4:00pm.  Based on experience, this appointment will go for an hour and a half so I am finally finished at 5:30, just in time to jump into traffic for my 20 mile commute home! 

I will be getting a lot done today and will educate myself.  Not only the infusion but also the days following because as you know, there is a lingering effect.  Needless to say, I will be going to bed very early tonight! 

If you think about it, I could use the prayers around the new chemo – that all goes well, side effects are minimal and that my body takes to it well and starts healing the tumor.  I have already seen the Avastin make a difference so adding this agent could also make a significant difference.

Thank you!!

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Happy Saturday – Third post in three days.  Lots happening. 

This will be a very quick post.  My Neuro-Oncologist called last night with some pretty good news.  She spoke to the Medical Director at Northwest Biotherapeutics and I will be able to use Avastin with DCVax-Brain and can even fold in irinotecan (CPT-11) if we’d like to.  The caveat which is fine is that we must stay within certain parameters with my ANC absolute nutrophil count.  This is something that is monitored like a hawk anyway.  So, I have to make it this 4 week period while the vaccine is tested for contamination, etc. but that means 2 infusions of Avastin (which I have been taking) and irinotecan now folded in.  Now praying for a) no growth and b) that my immune system stays strong.  I am very happy about this but also because for the first time, a doctor (and it’s my doctor whom I’ve been seeing for two years and trust) pulled all the information together – picked up the phone and talked to Northwest, another company Congate, the Hematologist group, etc.  Thank you for that!  She was caught in the middle politically because everything was handed off to this other office so if she started doing all of this it would be viewed as her “taking over” but she finally just did it and I was very grateful.  Politics.  So sad.

No one has used DCVax Brain, that I am aware of, using the combo of Avastin + DCVax or CPT-11/Avastin + DCVax.  Avastin + DCVax seems to be an excellent combo based on all of my reading.  So, this is all good news in my view.  Can’t change the quarantine period so we’ll just go with the route we placed upon.  Much more to come on Monday because the first Avastin + irinotecan infusion, presumably, will be on Tuesday afternoon.

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Interesting story from Newsweek.  I donated tissue for research by Charles Cobbs as part of my last surgery.

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Alright, get ready for this.  Now my patience is running thin.  This post will not only serve as an update but will also be therapeutic for me just by dumping it out.

First of all, I completed the leukapheresis process yesterday.  I arrived at 8am and left at 2:00pm.  The actual process lasted approximately 4.5 hours.

For those of you who haven’t caught up or are new, this is a necessary process to create the DCVax vaccine, a new vaccine being used to treat glioblastoma multiforme.  Blood is pumped via a very large steel needle in one arm, into a machine called a centrifuge that spins off your white blood cells and places them into an IV bag.  The blood is then returned to your body via an IV in the other arm.  Basically, you can’t move the arm with the rigid steel needle for the entire process – it’s essentially strapped down because if you bend it, the needle can pierce through the vein and/or skin.  The other arm is free.  Once the quantity of white blood cells are collected, the collection bag is sent (in my case) to Northwest Biotherapeutics (the maker of this vaccine) via overnight delivery and will processed.  From the white blood cells they will extract what are called dendritic cells, which are antigen-presenting cells (T-Cells) and will be combined with my tumor tissue that was taken at the time of surgery to create the vaccine.   Sorry for the technical explanation but if someone ever undertakes this process, this post will be here and save those individuals some time in researching the details.

So, this is great – I finished the process.  Remember, it takes 7-9 days to complete the manufacturing of the vaccine so I’m planning to have this a week from now or perhaps a week from Monday at the latest.  HOWEVER, two nights ago I received a telephone call from my oncologist on Tuesday night.  This is where everything went sideways, again.  She called and sounded very frustrated and I asked what was going on.  She said that my other doctor (the doctor who is coordinating the injection/vaccine process and is new process) received a call from Northwest indicating that once the vaccine is manufactured it must be placed in quarantine for 4-5 weeks for testing – testing for infectious disease, contamination, etc.  What?!  Another delay??  For a month???  This pushes it out to 6 months post-op and for a GBM patient that is an eternity  I was completely dismayed, particularly given some of my previous discussions.  Also, this brings up a multitude of questions – completely new set of circumstances.

For starters – and yes, it is water under the bridge, but when I met with the doctor coordinating the process, I had specifically and very humbly asked that a conference call be scheduled with the doctors on this end and whomever necessary at Northwest to a) discuss the research protocol in detail so we had a complete and detailed understanding and b) had a complete understanding of the remaining steps necessary, from A to Z, of the vaccine manufacturing process and when we would have it.  Obviously this never happened or we would have known, in the first week of December, that a week after the leukapheresis I’d be waiting another 4-5 weeks for this quarantine period to end.  As a GBM patient where every day counts, this is completely unacceptable.  I’d say that if this were their family members, a conference call would have been held pronto.  It’s a new doctor and my team has been excellent to this point but the ball was absolutely dropped.  And honestly, if the information didn’t matter and would have no influence on my treatment that would be one thing, but to me it did matter and there are several reasons why beginning with the opportunity to have a strategic discussion regarding my treatment plan which we were never able to have because no one could pick up the phone and find out about this.  Now, perhaps it was Northwest, I don’t know, but someone dropped the ball.  So, there are now ramifications to this.

1. If I knew about this in early December, would this have changed our approach?  Would we had added another agent in addition to Avastin?  Not sure (read on).
2. Now that I have to wait another 5 weeks, it’s a foregone conclusion that I will have add another agent on top of Avastin – most likely CPT-11, more commonly known as Irinotecan.  Irinotecan results in extreme immuno-suppression but combined with Avastin the two have yielded great results for some.   The MRI scans shown here are of a 75 year old woman with a GBM. The first scan was taken prior to beginning Avistan/CPT-11 and the remaining scans show the progress over a 12 month period. (She generously released these scans to virtualtrials.com for informational purposes.  Credit is given to virtualtrials.com as they are the source of this information.  Of course these results are not representational of all individuals treated with Avistan/CPT-11 but do indicate one individual with a very positive outcome.  So, it isn’t all bad, God has a plan and I have to trust in that but we have come way to far – on the cusp of obtaining the vaccine, to have this just slip away
3. If I use Irinotecan, does this preclude me from using the vaccine?  Meaning, does the research protocol indicate that I can’t do this.  There still seems to be confusion about the protocol, another issue.  I’m in the corporate world and I can’t stand disorganization.  Why is there still confusion here!  So, I’m getting my hands on a comprehensive doc today.  I have it in consent form but not a in-depth document.  I’ll figure it out myself and see if I can’t help guide the process.  Again, you have to be your own advocate.  This way, I can make the calls and say, for example, “yes, we can do this so let’s set it up”.

There are lots of other questions but suffice it to say that I’m not too happy.  However, this is where acceptance and trust come into play.  This happened on Tuesday night so yesterday and last night I wasn’t in too great of a mood but I’m slowly getting a bit better.  And, I found this great piece from some time ago and am just going to paste it here.  I can’t recall if I put it in a post from before but it’s an appropriate end to this post.  Sometimes nothing is easy but it’s all part of His plan and I have to remember that – have faith.  It doesn’t mean this hasn’t upset me – I was NOT happy about this.  I had this delay that no one saw coming waiting for a “slot” that didn’t come until January and now this – my surgery was in October so it will be SIX MONTHS post-op by the time I have the vaccine.  Well, with a GBM you might know the “stats”.  But, again, TRUST.  FAITH – HEBREWS 11:1

YOU SAY:  “It’s impossible.”
GOD SAYS: “All things are possible.”
Bible verses:  Luke 18:27
YOU SAY: “I’m too tired.”
GOD SAYS: “I will give you rest.”
Bible verses:  Matthew
YOU SAY: “I can’t go on.”
GOD SAYS: “My grace is sufficient.”
Bible verses: 2 Corinthians 12:9; Psalm 91:15
YOU SAY: “I can’t figure things out.”
GOD SAYS: “I will direct your steps.”
Bible verses: Proverbs 3:5-6
YOU SAY: “I can’t do it.”
GOD SAYS: “You can do all things through Jesus who strengthens you.”
Bible verses: Philippians 4:13
YOU SAY: “I’m not able.”
GOD SAYS: “I am able.”
Bible verses: 2 Corinthians 9:8
YOU SAY: “I can’t manage.”
GOD SAYS: “I will supply all your needs.”
Bible verses: Philippians 4:19
YOU SAY: “I am afraid.”
GOD SAYS: “I have not given you a spirit of fear but a sound mind.”
Bible verses: II Timothy 1:7
YOU SAY: “I’m always worried and frustrated.”
GOD SAYS: “Cast your cares onto me.”
Bible verses: 1 Peter 5:7
YOU SAY: “I’m not smart enough.”
GOD SAYS: “I’ll give you wisdom.”
Bible verses: 1 Corinthians 1:30
YOU SAY: “I feel all alone.”
GOD SAYS: “I will never leave or forsake you.”
Bible verses: Hebrews 13:5

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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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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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First off, on Christmas Eve as Rachael and I were getting everything done, I decided to open a gift that my parents had sent to me.  My mom had enclosed a note that said that when she saw it she knew I had to have it and it was perfect.  It was a beautifully framed, very rustic looking painting with Hebrews 11:1 enscribed in the background.  The colors on the canvas are browns and other earthtones as is the enscription so it’s like it’s floating there in the background.  Thanks Mom and Dad!  Very nice.  So anyway, a few minutes later, and I had never thought about this (inspite of CD having this enscription on it which was started in Jan 2007 and that this verse was etched on my leg in June 2007 before my first craniotomy) but I thought, hmmm, I wonder if there are any combination of characters that would work for a license plate but not be too “in your face”?  I found one that wasn’t taken:

So I grabbed it.  I like the plates that make you think a little bit anyway.  And, a plate like this will force people to look up the verse if they don’t know it.  Anyway, I thought this was a good find.  Some people won’t even put it together I suppose.  What’s also good about using the “1WN” at the end instead of 111 for chapter 11 verse 1 is in the later you don’t know if it’s chapter 1 verse 11 or chapter 11 verse 1.  With 1WN it’s clear.

Well, I have to call my folks.  I haven’t talked to anyone.  I was in bed – didn’t even go to Christmas dinner last night – until 8pm.  Up for a bowl of soup then slept until 8 this morning.  I’ve slept for most of today.  Oh well – what can I do about it?  It’s getting better.

I better get off of this – time to sleep some more.  I’m pretty tired still.  I feel cooped up and would love to get out but don’t feel up to it.  There aren’t even any bowl games on – not even the Toilet Bowl brought to you by Dow Chemical.  Sorry – my humor’s not there. 

Mark

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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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