Blogging in B Minor

I’ve been looking around for some “brain exercise” or fitness apps/tools to just exercise it for sharpening.  I believe that it’s important, particularly with short-term memory lapses ocurring from time to time.  Looking at it as a muscle, it needs work.  For me and my various areas of focus, mental fitness is something that must be maintained as much as possible.  Just as going to PT, I have to exercise my brain.  I am fortunate to have the ability to work and do well but I need to stay ahead of the curve.

Ideally, I was searching for an iPhone-based app(s) so I could use them anywhere.  I targeted apps that would work on my cognitive training/endurance through various methods whether it be spatial recall, logical reasoning, etc.  I searched in the appstore and finally came across a great set of tools from Lumosity. 

The first, Memory Matrix is great. It’s simple but at 9-10 squares it’s challenging and definitely pushes mental fitness.  There are other features of the lumosity web site that I haven’t explored as I was mainly after these mobile apps but it appears you can track much of what you do, leverage online tools, etc.  Speedmatch is another one that is worth downloading or using online.

I’m getting ready to plan my next DCVax injections.  I’ll be doing this next week hopefully.  I’m feeling better – counts are better.  Still working against fatigue and having to work harder on PT.  I’m feeling additional weakness on the left.  These are all things that I can’t change although this run has been a bit tougher.  I certainly can’t deny that!  At the end of the day, however, it’s in God’s hands.  I’m following the path but it’s really not about me – He’s not done with me and I just keep seeing examples of that.

I’ll post about this later, but a gentleman at work just learned he has a brain tumor – a primary and based on what I see it’s a mixed glioma.  I’ve spent some time with him and he’s found some information here that has helped him.  I know I didn’t have someone, or many, to talk to in-depth about what’s next, how did this go, etc.  I feel that if he has to go through it, I certainly am there to help.  I’ve walked down the road.

Pray that all are well,

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I’m slowly pulling out of this and have some time to ellaborate on my fun with the flu.  This flu is hard for anyone let alone those with a suppressed immune issue. 

First off, the strain of influenza I had been dealing with is called Haemophilus influenzae.  This is not to be confused with H1N1.  Most strains of H. influenzae are opportunistic pathogens – that is, they usually live in people without causing disease, but cause problems only when other factors (such as a viral infection or reduced immune function) create an opportunity.  As brain tumor survivors, we have inherently suppressed immune systems.   As I mentioned, my white blood cell count was 0.9 going in to the hospital and my absolute neutrophil count (ANC) was at 400.  Normal ANC is above 1,500 cells per microliter. An ANC less than 500 cells/µL is defined as neutropenia and significantly increases the risk of infection.  Neutropenia is the condition of a low ANC, and the most common condition where an ANC would be measured is in the setting of chemotherapy for cancer.  Neutropenia increases the risk of infection. 

So, I was a prime candidate which is why it’s important to have regular CBCs, which I do.  When the flu started my counts took a dive fairly quickly.  I have been on Avastin every other week The CBCs confirmed this.  The CBC on Thusday showed my ANC is at 1,200 now so I’m getting there but the week and a half of being down like this has taken its toll.

The MRI that we conducted in the hospital showed that everything is stable.  The one interesting detail is that there was an observation showing an infarct resulting from subacute ischemia.  Brain ischemia, also known as cerebral ischemia, is a condition in which there is insufficient blood flow to the brain to meet metabolic demand.  This leads to poor oxygen supply and thus to the death of brain tissue or cerebral infarction / ischemic stroke.  It is a sub-type of stroke.  This is viewed as a positive in my case because it shows that the blood supply to the area of the tumor is being cut off.  I’d venture to guess perfusion test would reveal this.  I am weaker on the left side and I have more issues with equalibrium.  I can’t be sure if this is a result of just having the flu,  an episode of radiation recall, or ischemia.  Regardless, I can’t do anything more than we are doing/have done.

Being in hospitals is not too fun obviously.  I don’t know how many bags of antibiotics were pumped through my body.  I ran a high body temp for awhile and that can make one more vulnerable to seizures (and ischemic attacks).  I had one seizure in the hospital.  Ativan handled it.  To add a bit more detail for those interested, the main symptoms of ischemia involve impairments in vision, body movement, and speaking.  The primary symptoms of brain ischemia that apply to me include problems with coordination and weakness in the body.   What is amazing is that all of this was a chain reaction that began with the flu.  My immune system is compromised and the dominos fall.

That’s it for now.   GLAD to be out of the hospital.  A prayer out to Michael who will be going in for a second craniotomy in the next week or so.  Please pray for him

 Cheers

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Today I will receive my second DCVax treatment – everything is moving forward according to plan!  I’m very obviously very happy about that.  I meet with my Neuro-Oncologist in about an hour and we’ll cover my labs from this morning and then I’ll have the treatment.  My labs from Monday were great.  My ANC (absolute neutrophil count) has been great – my white cell count has been higher than it has since I’ve been on treatment so everything looks good there.

I did have a seizure on Wednesday here at work.  I was in a small meeting with just my management team so that was good.  I’ve coached all of them on how to handle that – they really didn’t need to do anything other than “take a break”!  I took an ativan, did my breathing to relax and in about 5 minutes it was gone.  This is all the Gamma Knife.  So, this is about 5 since that procedure.  This was confined to my left shoulder again but that results in my left arm being involved.  I just got a ride home and then slept.  I find when I push myself I’m more susceptible.  I”m still working just 5-7 hours depending on the day.  I increased my meds based on previous discussions with my Neurologist and will continue to if anything else happens.  None of this is unexpected though and the positive here is that I have a good 30 second or so warning.  I know when it’s coming so when I drive I’m either in the right lane or the far left – and it’s my left side so even if my left leg became involved, which it hasn’t, I feel pretty safe driving.

I put up a new area in the blog that contains life pictures.  You can find it under the photos tab.   I have put pictures from pretty much my entire life – childhood, growing up, Rachael and I, my children, etc.  I wanted to have a place where we could go and see all the fun times we have had and continue to have as I add to it.  Also, I want people to know that just because you have a brain tumor you can still have fun.  Don’t get me wrong, there are days when I am irritable and not in a great place (or let things get to me a bit) but there are also days when I am in the backyard, playing soccer with my son (I just can’t kick the ball with my left foot!) or trying to beat him in a game of horse.  We still enjoy life.  We’ve had some good getaways.  Rachael and I are going to getaway for our wedding anniversary too.  We are going to…..Sacramento!!!!  Woo Hoo!  We didn’t want anything other than a few days alone so we are staying local in a nice hotel, going out for a few dinners and will just enjoy time away by ourselves.

The Sacramento Bee writer and photograher were over to our house on Wednesday night to talk with Rachael to finish up the piece that will likely run in this weekends paper.  I wrote about this several posts ago so you can read that if you haven’t to know what it’s about it.  I will also post a link to the online version of the article once I know when it’s published.  It could slip into next week too – not even sure.

 That’s it for now.  Have to run.

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Just a quick post here tonight.  I had my infusion on Wednesday – my lymphocytes were up around 1500 (they only need to be above 400 to use the vaccine) and my absolute neutrophil count was up at 1400 which is great.  So my counts are doing great.  As far as how I’m doing – ok but the nausea this time around is worse and I’ve had a pretty severe headache.  The fatigue, interestingly enough, hasn’t been quite as bad as it was after the last infusion.  Infusion – isn’t that a strange term?!  I just came back from the kitchen after brewing a cup of loose leaf green tea using a great self-contained, all in one cup and infuser.  This particular tea, called Green Tea Heaven (you should get some from Teavana if you like green tea – it’s really good!) can be used over three infusions.  Nice!  I’d much rather deal with tea infusions than infusions of Irinotecan.  Anyway – random tangent there…

The headache has been pretty constant.  I spoke to my doc about it and she said she’s not really worried about it.  Headaches are always a concern with these drugs though – particularly Avastin.  A really severe headache can signal a bleed so you just need to keep an eye on things. Nausea of course is par for the course with most chemo – some Zofran helps with that.  The fatigue isn’t as bad because I decided to follow orders (and took my wife’s advice) and just rest.  I contemplated working for “just a few hours” today but I couldn’t do it.  I sat down at the keys at around 10am to play just to relax - I have a song started, the acoustic guitar is layed down on a track and I have tracks set up and loaded with full string sections of Cellos, Violins, Violas and Basses that I put together last night but I couldn’t move on it at all.  Songwriting on chemotherapy doesn’t work.  So far, songwriting with a brain tumor has worked so well.  I burned out the last CD in 5 months in terms of writing but I can’t get things going.  Oh well – it will come.  I guess I’m being hard on myself considering all that is going on.

So, the day has been mostly filled with sleep.  The headache is a bit better – I decided to take a pain med after it was really pounding away.  But, this will pass.  It’s temporary.

That’s it for now.  This should be the last Avastin + Irinotecan infusion as we are tentatively to begin the vaccine on the 16th.  We will see…

Cheers,

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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:

======================= 

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

======================= 

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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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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I’ve come to the end of the road with chemotherapy. As you know from the last several posts, I was off chemo (again) for nearly 6 weeks and just hopped back on the wagon and completed my first week on Tuesday. However, I developed an infection over the past 3 days which is no coincidence so I went in to see my neuro-oncologist today at her request after discussing it with my case manager at the Sutter Neuroscience Institute.

Upon discussion with my neuro-oncologist, we discussed a number of points, namely that I’ve had to come off chemotherapy for extended periods in the last 3 months, once for the terrible flu I had to ward off and a second time and more recently for the cold that brought my absolute neutrophil count down into the 850 range. Then we talked about having to come off again to ward off another infection. In charting out labs since November, my counts have steadily decreased as my posts have indicated. I’m now essentially lymphopenic, meaning I have an abnormally low level of lymphocytes in my blood. Lymphocytes are a white blood cell with important functions in the immune system. The most common cause of “temporary” lymphocytopenia is a recent infection, such as the common cold. Makes sense! However, with me it’s been going on for awhile. To date, this hasn’t really been called into question but we have reached a point where we have to question the effectiveness and logic behind continuing treatment if I have to periodically pause my treatment because of issues like this. I could try the 5 days on and 25 off but that is a much higher dose and would hammer my immune system even harder. I would have just as much of an issue there.

In the end, I have completed 7 rounds of “week on/week off” therapy. That’s 3 1/2 months over that 7 months of being on chemotherapy 24 hours a day. This regimen is being used in trials today so there isn’t a lot of data but it’s something that we view as a solid approach. I wanted to get to a year but I can’t will myself there. My body wouldn’t let me. This is God’s way of telling me it’s time to stop and move on – live my life, feel normal again, enjoy my family and live day by day. If we ever encounter growth, it just goes back to the original discussion around surgery, chemo, etc. I could go back on chemo using Temodar or another chemotherapy drug. I could have surgery – it would all depend upon what took place.

There is a part of me, I must admit, that feels as though a security blanket is being pulled away from me. My tumor and scans have been stable – no growth at all. There was some growth, albeit slight, from the time we discovered this in the initial MRI in 12/2006 to when I had my surgery in 6/2007. Since my surgery, however, this has been a stable situation. Pulling the chemo out of the mix is like taking off that life vest, but I know God is there and He is in the middle of this – He is steering the boat, not me and as usual, it’s about giving it up.

Time to move on to a new chapter. This was a good run. I will continue with scans every 60 days and I will have another here soon. It will take about 6 months for my immune system to recover and return to a relatively normal state. I will take the same antibiotic, Bactrim, that I have taken all along during the next 6 months to help fill the void in my immune system. Other than that, this is where I stand!

Cheers,

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