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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