Blogging in B Minor

My MRI was on Tuesday and I had an appointment yesterday with my Neuro-oncologist.  Overall the news was good.  The size of the tumor has not changed which is great news, again.  There has been an increase in what is called T1 shortening and mild enhancement associated with the lesion.  In layman’s terms, this means the blood-brain barrier of the cell walls have broken down somewhat - it’s a vascular change in the tumor is all.  A change - it’s irritated for some reason.  The cause?  It could be from all of the treatment over the last year.  It’s been hit with a heavy course of radiation with concurrent chemotherapy over 5 weeks.  The was preceeded by surgery which resulted in a biopsy and finally I completed 8 1/2 rounds of chemotherapy.  So this is really my first post-treatment scan.  The report indicates that this “could” be related to post-treatment changes and of course recommends continued follow-up imaging.  We are doing that anyway.

This is the first scan that they haven’t used the term stability but my doctors also didn’t say this is anything to cause major concerns - we just need to keep watching it.  And they all know me very well!  I’m the straight shooter.  Reality is all I want to hear so no holding back ever happens here. 

I’ve said it before and I will say it all the way down the road.  It’s all in God’s hands here.  We are all human and I have my own times when I can sit and reflect on what is happening in my life, our lives - think about my two kids, my wife and what all of this means to us.  But in the end, we all know that a lot of analysis and worrying isn’t very helpful to our daily lives.  So we are human - there is not some kind of power we can employ to feel “ok” about everything all the time, but you accept it - you accept your circumstances because you have to and I have learned to live with it - and so has Rachael but around the time of my scans we feel vulnerable and it’s hard not to think about it because it’s put front and center.

In a week Aidan starts soccer - every Wednesday and Friday we’ll be going to practice from 6:30 to 7:30pm.  That will be a lot of fun for us - a great Father/Son time.  He loves to get out there and kick the ball, run around and just have a great time and I think he really loves to kick the ball further than his dad.  Games every Saturday until November.  He is a competitive little boy - we’ll see how this goes but I know it will be a lot of fun - probably more for me!

That’s it for now… 

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Tags:  blood brain barrier , Brain Tumor , chemotherapy , glioma , God , MRI , MRI enhancement , oligoastrocytoma , radiation oncologist , Radiation Therapy , survivor , Temodar

After a long discussion yesterday with my Oncologist, I have decided to stay on the alternating 7-day on / 7-day off chemotherapy plan. I had somehow mistaken (or for you Roger Clemens fans, “misremembered”!) what she had told me. I had thought that what she said was that all of the patients she had on the alternating 7-day she had switched to the 5-day. What she had said was they were all put on the 21-day. She explained that although the scientific data is still lacking, there is enough to show that for GBM patients, the 21-day on / 7-day off regimen provides an additional 6 months of survival. The reasoning behind this is that the tumor is being more consistently treated. On the 5-day, although it is dose-intensive, there are 23 days when the tumor is able to “recover” so-to-speak. My lifestyle with a family can’t support, I don’t think, the 21 day so I’m going in between which is the next best course of action. This last week on was pretty good, too. So, as long as my scans are stable, I will just continue with the 7-day. I have lost some weight so I will go from 295mg to 280mg and just remain steady at that dose. If my scans are stable through 1 year, I will come off the drug completely. If there is growth, I will be taking another course. If there is shrinkage, I will continue on Temodar because it’s obviously effective.

I think it’s a good exercise to go through. I always want to be stay on top of my care and be asking questions, be wondering and inquiring and not be complacent. My research continues although I am on an established course now making clinical trials and other routes a bit unnecessary at least for the time being. I have always said that you have to be your own advocate though - and you do! In my last appointment I went round and round with my Oncologist about tumor growth. I wanted her and the neuro-radiologist to go back to December 2006 and plot any growth to date. She had done that and said there was none. I went back to the findings of Dr. Mitchel Berger at UCSF and Dr. Peter Black at Harvard, both of whom said there was growth and asked her to explain the difference of opinion. I will spare you the saga but suffice it to say it was a dicussion that had an edge to it and took some time to conclude. You have to step up though. It’s my life - it’s my future and my family’s future so I’m going to be absolutely sure that everything is looked at very closely.

I had a few nights of insomnia - 2 hours of sleep each night but caught up after that. Everything is good and we are all doing ok. That’s it for now. Thanks again for all the support, emails and of course for those of you that have emailed just starting on this journey. I really appreciate hearing from all of you. I certainly understand where you are and it makes me feel good to give back. When this happens in your life you feel so alone and connecting with people who are going through the same situation is important. Don’t hesitate to contact me through the contact me forms on this site…

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Tags:  astrocytoma , Brain Tumor , Brain Tumor Research , Brain Tumor Resources , chemotherapy , GBM , MRI , Oncologist , radiation oncologist , Temodar

Stable disease! I feel so blessed to have had multiple imaging studies now showing a stable tumor. Needless to say we are very happy. I don’t know why but I was a bit more anxious about this one. I prayed about it and turned it over but I must have held on to it more than I typically do. So, all is well and I have entered cycle #5 of 6 as of last night. The first few days make me tired and the first several days afterward are the same - in between is alright. As I have mentioned, the end of cycle 6 (the six month mark) is key and I will have some big decisions to make.

If you have ever wondered what an MRI report looks like, I have posted it below - just click on the “See photo in full size” and it will pull the report up in a new window. I have cut out all of the personal info for obvious reasons but for those of you who are starting on the journey, it will give you an idea of what to expect. All of the reports provide a history, the type of examination conducted, what the current study is compared to (if you have had previous studies - this is to gauge any growth or change), the techniques used as part of the study, the findings and the final impression (basically a summary). The technique used and the findings are highly technical. The technique really refers to the types of scans used (e.g. sagittal (also known as median) plane is an X-Z plane, perpendicular to the ground, which separates left from right) and if a contrast agent is used such as Gadolinum (Gadolinium-enhanced tissues and fluids appear extremely bright on what are called “T1-weighted images”). This provides high sensitivity for detection of vascular tissues in tumors and permits assessment of brain perfusion. Finally, the impression is really the most important part of the report. In my case with this report - “stable right posterior frontal abnormality consistent with cerebral tumor.” Stable. After reading reports like this for over a year I know how to read them!

So, my next MRI will be at the beginning of April and this will be the same time I will finish the 6-month regimen of Temodar - “the standard of care”. Decision time. That’s all for now. Thanks to all for your prayers, well wishes and good thoughts - we know they all help so much!

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Tags:  astrocytoma , Brain Tumor , brain tumor survivor , chemotherapy , Faith , gadolinium , GBM , glioma , MRI , MRI enhancement , My Story , oligoastrocytoma , Oncologist , prayer , radiation oncologist , radiologist , Temodar