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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As luck (or a hashed immune system!) would have it, I ended up with a cold.  Who cares at this point – it’s par for the course and I’m working on bringing myself back out of this over time.  It will take about 6 months and I will take antibiotics the entire time which will help me.  Now I’m not sure if this was caused by me, but my son woke up on Wednesday morning with a terrible cold – running a temperature and the whole nine yards.  I’m watching out from all sides!  He’s worse than I am for some odd reason.  I feel bad for him – he’s been in camp all week and had to miss yesterday and today.  I’m hoping he can finish out tomorrow at least.

Also on Wednesday I had some strange sensations in my left bicep – just slight contractions on and off in the afternoon.  They started again in the evening and at that point I knew it was my long lost friend – focal seizures.  So, after a period of time I became annoyed with it (I was trying to watch Dateline or something) and took an additional 200mg of Lamictil and they said goodbye.  For those of you that can’t envision this – this time it was like having a strong twitch in an area of your body – you try to turn it off but you can’t.  You see, a focal seizure can be as simple as that or a marching numbness in your hand or arm.  So many people have this classic vision of a seizure – someone flopping around on the ground.  That’s just not what they are all about.  There are a lot of different types.  I spoke to my neurologist about it – there’s nothing you can read into this.  It means nothing.  People can have clean scans for years and have seizures throughout – I actually never have them since 7 months ago or so.  People can have tumor growth and no seizure activity.  It’s just not an indicator of anything.  So you deal with it which is why when it happened I took a pill, talked to my wife about it and went about my business (back to the Dateline thriller!). 

You just can’t get all caught up in this stuff – you have to have faith in God and turn it all over to Him – period.  Could you imagine if I took every issue – a seizure, an upcoming MRI scan (I have one next Tuesday), some weakness I feel on the left side of my body, statistical survival rates, etc. and worried about them and placed it all on my shoulders?  I’d be an anxiety-ridden mess!  I remember when I came back to work and had 2 weeks of radiation left.  I was worried about how I’d get through that and still work but I turned it over to God.  And?  And I worked, left at lunch and went to the Institute and had radiation treatments, came back to work and finished my day – and I was on chemotherapy at the same time.  I got through it but not because of me – I had some help there.  The task ahead of you is never greater than the power behind you, right?  It’s true.

I have my 60-day MRI check on Tuesday – see my Neuro-Oncologist on Wednesday to discuss and then I’ll be done for a few months.  Things are good! 

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I just read a story on MSNBC regarding the treatment plan for Senator Kennedy. It really just underscores the standard of care today with regard to malignant gliomas. As you know if you are a consistent reader, I have a grade 3 oligoastrocytoma. Although not publicly stated, most believe due to age and other statements that have been made that the Senator is dealing with a grade 4 glioma or a glioblastoma multiforme. Either way, the standard of care is mostly the same – surgery followed by concurrent radiation/chemo using Temodar followed by chemo (Temodar) and perhaps another chemotherapy drug such as Avastin. However, for grade 4 tumors, there are a lot of other options because of the sense of urgency.

Dr. Allan Friedman at Duke is performing the surgery and he is one of the imminent Neurosurgeons in the country if not the world and a giant in the world of research. I put up a post back in Janurary about a colleague of his, Dr. Henry Friedman (no relation) and a research slideset that he presented at the National Brain Tumor Fall Teleconference – Treatment Update for Brain Tumors. It’s highly technical in areas but it is worth going through. This slide set is also posted in my Resource Library along with many other resources that you might find valuable.  Dr. Allan Friedman heads up Neurosurgery at Duke while Dr. Henry Friedman is a Duke neuro-oncologist.

As of December, the Duke “Standard of Care” was described in this slide by Dr. Friedman – it includes a variety of options that you’ll find in the slideset including Gliadel wafers (embedded in a tumor cavity during surgery), the use of Avastin, Temodar, another chemo drug called Tarceva, CCNU and some clinical trials such as a vaccine they are working on:

I would recommend that you download the slides and go through them just to see what treatments are available and to see how deep these options can get. There is so much more to this than just going to your doctor and hearing a few things. I know many of you don’t do this so I am not inferring that – but I think we all need to be our own advocates and I would venture to guess that this material and the sheer volume of options can be intimidating to anyone – it is to me. Therefore, we need to keep going and stay on top of these options, even when we are well, just to know where the research is heading.

The take-away for me from today’s news? There is a standard of care and the absolute best that the world has to offer indicates that surgery followed by radiation (for me it was IMRT) and concurrent Temodar followed by 6 months to a year of Temodar (6 months is the general standard). Of course, this is different/tailored based on the case. As I stated, grade 4 tumors are an entirely different ball game because the survival rate is not very far out – so lots of options exist as shown above. But, the general decision tree and staples remain the same.

The bottom line is we are blessed to live in a world where so much exists to help us.

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As of last night, I took the last of my Temodar to reach the 6-month mark which is the official “standard of care” if you will.  I guess it’s a meaningful milestone in that most of the brain tumor centers including UCSF will recommend this regimen because patients have had the highest degree of success addressing their brain tumors by first having surgery if possible, then b) utilizing IMRT radiation or some other form as appropriate and then c) chemotherapy.  For me as you might have read in previous posts, I had surgery which resulted in only a biopsy due to the location of the tumor (straddling the primary motor strip) and then followed that up with 5 weeks of concurrent IMRT radiation and chemotherapy using Temodar.  I then took 4 weeks off and subsequently started pulse therapy using Temodar on an alternating weekly schedule (7-days on / 7-days off). 

I have another MRI today so could again use your prayers.  I have continued to be asymptomatic.  I had a strange episode about a week again with my vision – an object (my dress shirt hanging in the bathroom) seemed to suddenly “zoom in” although I was 5-6 feet away from it.  I had to grab on to the wall to maintain my balance.  It was a little bit strange but I’m not sure I can really attribute it to anything.  Taking the Temodar and also anti-convulants, etc. – it’s hard to say.  But this is why I have MRIs so close together.  We need to track everything.  It’s been stable all along so we’ll continue to look at it. 

I will likely continue on Temodar for another 6 months.  On one side of the coin, it seems difficult to take chemo for the same amount of time in front of me that I’ve already been taking it.  However, this is what is going to help me manage this for now so I look at it positively.  The only drawback is it does take its toll.  I believe there is a cumulative effect that builds up over time and you become increasingly more fatigued.  What can you do though!  You accept it, you keep going.  But, you have listen to your body.  I was very tired this weekend.  I needed some time to just rest.  I slept a lot at night – like a full 10-11 hours and sometimes that is just what you need.  I’m pretty tired today too.  I kind of go through phases like this.

We’ll see how everything goes later today – it’s in God’s hands – all of it has been and will be.  I have an appointment with my Neuro-Oncologist tomorrow and will review the MRI in detail but I typically get a prelim before that. 

More to follow!  I hope all of you had a great Easter.

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Well, I have decided that when I am finished with cycle #5, I am going to try the 5-day chemo regimen. With this schedule, I will take Temodar for 5 days and then be off of the drug for effectively 23 days each month. I mentioned in a number of posts back in the October time-frame or so that the reason I was on this 7-day alternating week schedule was due to the improved survival rate. There are studies that indicate this is true, particularly when taking the drug every day at a lower dose as I did concurrently with radiation therapy post-surgery. However, I opted for a 7-day alternating schedule because I just couldn’t deal with being on the drug 24/7/365 so-to-speak. As the cumulative effect has developed, however, it’s become more difficult to recover each week on the 7-day.

It’s a difficult, strange new land to navigate – full of decisions to make and everyone has a different opinion. There is no doubt that the radiation and Temodar as the chemo of choice and used concurrently were right on target. The questions are the regimen and secondly how long. Some people take this drug for 2 years. The “standard of care” is 6 months. My oncologist is probably going to recommend 1 year. So, if you have stable MRIs through a year, obviously coming off of the drug is a little bit unnerving. However, there are long term side effects to taking this drug – such as Leukemia. One thing is for certain, based on research and discussions I have had, it doesn’t appear there is any benefit to using Temodar beyond 24 months.

In 2 weeks I will sit down with my Oncologist and discuss this but I’m definitely going to try the 5-day. It will be about 100mg more per day – 400mg instead of 300mg. I’ve tolerated it well so we’ll see how it goes but the goal is to have more quality time each month with my family. It’s not terrible and I make it through ok but if I can improve it, particularly given the little data re: survival rates and the significant data backing up the 5-day, that would be great. Additionally, I have done the alternating regimen for nearly 6-months so I feel good about that.

Site Search Tags: brain tumor, brain tumor research, cancer, chemotherapy, glioma, gbm, my story, oncologist, oligoastrocytoma, radiation therapy, radiation, temodar, tumor

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I came across a very good slide set put together by Dr. Henry Friedman, MD of Duke University Brain Tumor center. At this point in my treatment, because I have what is referred to as “stable disease”, the standard of care is what I will continue with which is my 7-day on / 7-day off Temodar regimen. However, if anything were to change there are a lot of different options out there.

This slide set is 100+ pages long but it’s worth taking a look at. Don’t be intimidated by it – there are statistics in it and there are a lot of diagrams that require you to be a chemist to understand them – so just blow by them. It is a good slide set to have, IMHO, just to be acquainted with options. You can download the slide set here or you can go into the resource library and get it there and peruse the other resources available there at the same time.

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It’s time for my 60 day check so I will have an MRI tomorrow morning at 8:00am. As per usual, I’ll hand-carry the films for an 11am meeting with my neurosurgeon and oncologist so we can discuss the outcome. I have some anxiety but as I’ve said before and believe in my heart, it’s all in God’s hands. There is nothing outside of everything I am doing that can change the outcome. I think it’s only human, however, to have anxiety about it. This will be a clearer view than before. The MRI on October 1st was right after 6 weeks of daily chemotherapy and 5 day a week radiation. Even though we are certain there was no enhancement (the tumor was quite stable), it is still difficult at that stage to get a clear picture of what is going on what with everything that area of the brain had been subjected to in a short period of time – surgery, radiation, chemo, etc. This MRI, although I have been through chemo treatment for 2 cycles, will be clearer.

The cold I have had has turned into a really bad cold. I was home yesterday and today. One of the worst colds I have had in a long time. I’m not sure if it’s because it is truly a bad cold or if it’s because my immune system is weaker because of the cancer and chemotherapy and as a result it’s hitting me hard. Maybe both. Nonetheless, when I see my oncologist tomorrow she may delay the start of my third cycle – we will see. A young boy was here on Saturday to play with my son and after he was here for about 10 minutes I knew I may be in for it – he had kleenex and was wiping his nose. We have told people and I am careful about exposure. I kept my distance, Lysol’d the door knobs and everything when he left! Well, it was to no avail. So, I’ll get through it but it’s something else to deal with when you are going through chemotherapy.

The last thing that has been just a bit strange lately is this sense of deja vu’ I have been feeling It was Christmastime last year that all of this started. At this time last year, everything was seemingly normal although we all know this was in my brain and I didn’t know it yet. It was the Wednesday before Xmas when I had the symptoms that we determined later to be a seizure – numbness in my left hand and wrist, a slight droop in the left side of my mouth. That is all I ever presented with – but it led to this diagnosis and I’m glad it did. If I didn’t have those symptoms this would have just grown unknowingly in my brain and knowing everything I do now, and the type of tumor this is and how it evolves, I would have likely been diagnosed with a glioblastoma multforme by the time it was detected which is what happens in the majority of the cases. So, the Holidays are a bit different for me now but are still a happy time to spend with family. I’m not the type to let an event or circumstances over shadow things.

That’s it for now. I’ll post results of the MRI on Friday or over the weekend depending on when I have time and what they are. I appreciate everyone’s support…

Site Search Tags: brain tumor, chemotherapy, mri, seizure, gbm

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It has been really nice receiving emails from so many people finding my site. It feels good to give back. I’m at a point in this journey where I can give back now that I have gone through surgery, radiation w/concurrent chemo and am now on pulse therapy going into cycle #3. More significant, as I have found out looking back, is what you go through emotionally and spiritually. I have writtten that my album, River of Faith, is all about that – the songwriting took me from struggling with my circumstances to ultimately accepting them, surrendering and having faith and knowing that God’s plan will carry me through. Being able to share this testimony, even at this point with others who contact me, feels good.

I have received emails from people recently diagnosed and just beginning – people wanting to know what it’s like. I have received emails from folks having a hard time coping and just reaching out to someone else that shares their circumstances. I have communicated with solution seekers like myself – wanting to find information, research documents – whatever it may be to enhance the treatment plan. And, I have received emails from people who just are happy to find my site. You know how good that makes me feel? For a guy who just put up a site about his music – markmillermusic.org – and then added a little /blog to it which evolved into a platform to about primary brain tumors – it’s great. And for me, giving back and helping other people helps me.

On the personal front, things have been pretty good here. I’m still good in terms of being out of the radiation side effects that I was feeling up until mid-November. I do have a pretty bad cold right now which isn’t good when you are on chemo – I need to talk to my neuro-oncologist and find out if we still start up again on Thursday or not. My blood work has been great all along but typically if you have a cold or flu, it’s questionable whether or not you postpone until you are a bit better. We’ll see.

I’m due for an MRI – it’s a 60 day check. This will be the second that I will have had post radiation/chemo over that 6 week period. It should be much clearer than the first. Obviously, the key again is management and to see if it is stable. I have some anxiety but it’s in God’s hands. What can I do? Not much. I’ve prayed and followed the treatment plan! So, that is that. I’ll get into the tube as it were and we’ll see how things are.

That’s it for now but all the emails are great. I’m glad you find the site and information helpful.

Site Search Tags: chemo, radiation, brain tumor, temodar, mri, God

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