Blogging in B Minor

Well, the day has come that I have finished the 6 weeks of daily chemotherapy (46 doses) using temodar and 33 IMRT radiation treatments. The next step will be to take an MRI snapshot and see where we are compared to previous MRIs. I have to say that the daily trips for radiation are certainly a grind but at the same time, I looked at everything in a very positive light – this was a necessary course of action for me. I couldn’t resect this tumor at this time so pulling out the chemotherapy and radiation treatment cards and playing them concurrently from the beginning was my best approach. Regardless, it is nice to shed myself of the daily trips Monday through Friday to the institute, be strapped into a table and have a linear accelerator run around my body! Additionally, I took chemotherapy pills daily every evening. I will be taking 4 weeks off from that.

Once the MRI results are in, a treatment strategy will be set. Barring some very aggressive growth which would result in surgery, stereotactic radiosurgery or some other intervention, I will probably end up with a recommended treatment of chemotherapy in the form of “pulse” treatment. What this means is I will go on a cycled plan wherein 1 cycle equates to 1 month. For each month, I will take chemotherapy (Temodar) for 1 week and then be off of the drug for 3 weeks. I will do this for 12 cycles or 1 year. They will take MRIs every 3 months or so and we will see how the tumor is responding to the treatment. If we see growth, it will be time to look at alternatives. If it is stable, then we stick with the program. Also, the dose during the week on is more than twice the dose I have been taking. It’s based on square meter of body surface. The dose during the 6 week period was based on body weight. For me at 175 pounds I was taking 145mg of Temodar. So, it will be interesting to see how I take to a dose that is more than twice that dose. I did ok with this does but more than twice the dose will be a new test.

So, this part of the journey comes to an end and the next segment begins. It’s a journey and that is how it all has to be viewed. At this point, most days are filled with a positive outlook. I still have days that are difficult. Those days are becoming fewer and further between. More to come on this front.

Still playing music and working on new material – just going very slowly at this point!

One final note, I have noticed the usage of the blog here building. All of you coming seeking information related to brain tumors – I will be adding a lot of content to the blog shortly that is a result of all of the research I have done. I have a few binders full of data – this is how I am by nature. It’s only fitting that I get it out here for all of you to use. I have looked at statistics and it’s amazing how many people have landed here – from so many places. Sweden, Australia, Canada, Germany and of course the USA – and the searches are all over the board related to brain tumors, chemo, radiation, every “type” of brain tumor you could imagine. What I am finding is that this blog is popping up on page one of many of these searches. This tells me that either my site optimization is really really good – maybe?! – or, there is not a TON of information out there in layman’s terms. Plus, what I found is that there is a lot of clinical information but not a lot of information, in one place, that really chronicles someone’s journey through this strange new land – and it’s strange for me and I’m finding my way as I go. There are books out there that I have and am reading. There are also web sites where you can start a journal. But since I have my own site and have development and IT as a background, I’m going to build this out so that the breadth of information and research I have done and boiled down to simple content will help.

More to come with all of this too!

Subscribe by Email RSS Subscription