Blogging in B Minor

Yesterday’s appointments went fine.  I was able to understand a lot more about the vaccine research protocol which is great.  The short of it is we should know by the end of this if enough white cells were collected during the leukapheresis process that took place last Thursday, the 8th.  They do a 0-day check when they receive the package and then another check at around day 7.  So, we are holding the Avastin + Irinotecan infusion until next Monday, the 19th assuming we find out that the cell collection was sufficient.  By the way, they have never had a case where they were short on white cells so this should be ok.

After the infusion next Monday the 19th, I will likely have another on Monday, February 2nd and then we will hold treatment because we are targeting the start-up of vaccine treatment on Monday, February 16th.  I have a calendar that spells out everything involved.  It’s once a week for a month, then every other week for a month, then monthly up to 2 years.  I will have MRI’s every 6-8 weeks, a CBC before each treatment and a checkup each time I’m in the office for an injection.  We will couple the use of the vaccine with Avastin – and we have talked about using, perhaps, a light dose of Irinotecan.  This will all depend on my lymphocyte count.  We will also measure by absolute neutraphil count. 

All in all, with chemotherapy, it’s a cocktail approach.  Anyone who has read Ben Williams’ book knows that he hit his GBM with many different agents to keep the tumor “guessing” as it were.  So I will be a test tube in many ways and we will just strike balances and then look at MRIs and also, of course, me – do I become symptomatic of not during the treatment process.

Yesterday was good.  I received more information than I have all along about the process and in spite of the delay which we can’t change (it’s part of their process and we just didn’t know about it – and it’s required by the FDA), we now have firm dates.  There is a 5% chance of the vaccine being contaminated but chances are this just won’t happen. 

Aside from all of this, I have been more fatigued than usual.  I spoke to my Neuro-Oncologist yesterday about the fatigue yesterday and she said:

1. You have had several Avastin infusions and it’s a drug that is in your body and is fighting the tumor. 
2. In spite of Avastin causing fatigue, your body itself is putting all of the energy it can in fighting the tumor so you don’t have a lot of “extra energy”.  The tumor is essentially a foreign object and your body is trying to rid itself of it.  What extra energy you have you are working and doing some things at home

I went out to a few boards just to see if others experienced this same side effect because if I can do something about it I’d like to.  Even in Physical Therapy last week I was pretty hashed and only did the electrical stimulation on the tendon in my left foot.  Well, I found out that I am far from being alone – there were a number of posts like this one:

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Subject: RE: Extreme fatigue after Avastin treatment
Date: 02/16/2008
Dear Barb,

I spoke with our Duke doctor, Henry Friedman, today regarding Mom’s fatigue.  He confirmed that the Avastin can cause extreme fatigue.  So, after determining that Mom has never had a seizure, he decided to prescribe Ritalin. Ritalin is a med that is typically prescribed for kids with ADHD, but it acts as a stimulant in adults.  He is hoping that the Ritalin will counteract some of the fatigue.  Perhaps you can ask for the Ritalin for your husband too.

We can’t get the Ritalin filled until Monday when we can pick up a script from our local MD (it is a controlled substance, so the script cannot be phoned in), but we are hoping that it will help her gain some energy for the next few Avastin treatments.  Mom has always been such a fighter, but she is so tired now.

Wishing all of you the best always,

Nina

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Well, Henry Friedman is certainly one of the best in the country – and the drug label for Avastin even says “extreme fatigue” is a more common side effect.  As far as my fatigue, I won’t be taking this advice and using a pill to feel better, particularly Ritalin!  I’m just working through this like I did with Temodar.  My challenge as it was when I was on Temodar is being physically “up” when I feel so drained.  When people ask me how I’m feeling, I understand that “tired” isn’t the best answer.  At the same time, “fantastic” isn’t true.  So, it’s a balance.  When I was taking Temodar I slept quite a bit so perhaps I need to slow down a little bit – not sure. 

For those of you on treatment, you can attest to this and know what I’m talking about.  You just feel how you feel and there is nothing you can do about it.  I try to push myself but when I do too much, I become really tired and at times have had seizures so it’s kind of a catch-22 until you find a balance.  Quality of life is important but at this point I am doing fine – certainly well enough to laugh and enjoy my kids, have dinner with a group of people, get my work done, etc.

It’s just part of having a brain tumor and only you know how you feel – just like those around you that don’t have one know how they feel because they, too, are affected by your diagnosis.

That’s all for now – will keep everything up to date here….

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