Blogging in B Minor

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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