Blogging in B Minor

I haven’t posted the post-op MRI which will show you the drastic change made as a result of surgery.  Essentially, where the tumor existed before you will see a “black hole” on the MRI scan for lack of a better term.  This represents the area where the tumor previously existed and is now gone.  Here is a picture of that scan:

And you might recall the pre-op MRI image.  This image isn’t the “cloudy” image that it was before it went through the malignant transformation from a grade 3 to a 4, or etter referred to as a glioblastoma multiforme. 

And here is a saggital view of the post-op MRI:

As you can see, this was a sizable resection and the tumor was sitting right on top of the motor strip so all of those fibers were taken.  It’s really a miracle that I’m walking with a cane and I’ve started walking without one here and there.  We can only credit God here - working through Dr. Zusman and pulling off what only He can pull off.  I mean, this is a 2cm x 3cm portion of my brain that is completely gone.  Motor strip tissue gone.  So, there is nothing more to say here.

Anyway, this is just a quick update.  I have a pretty busy Sunday and should have a busy week.  I am now really wanting to get back to work!  There are fears but I can’t let those drive my life (having seizures, having side effects from the vaccine).  But if I can go back to work and do chemo with concurrent radition (I went over lunch and had radiation treatments last time), I can do this. 

I’m still dealing with some ups and downs which leads to being irritable which isn’t fun for mainly my wife!  But I know I’ll get over that.  I think I’m struggling more with this one more than issues in the past.  The GBM is hard to take.  I’ve been breaking my own rule of not staying in today but I will recenter myself.  I also wanted to learn more about the vaccine and as a result of my research ran into statistics.  You have read my posts about this so I had to go back and read the post I made back some time ago called “The Median Isn’t the Message” which puts the world of stats into perspective.  So that took care of that.  I still am working on stay in today.  I’ll get it but I’ve just stumbled a bit. 

Well, more to follow this week…

Cheers,

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Tags:  Brain Surgery , Brain Tumor , brain tumor vaccine , Christian , Dr. Edie Zusman , GBM , glioblastoma multiforme , grade 4 , MRI

Well, the preliminary results came in last night as I met with my Neuro-oncologist.  Not so good.  My last MRI showed a slight bit of contrast as you may recall but no growth which was good news.  However, in the 60 days or so since then, it’s doubled in size.   It’s still small compared to many malignant brain tumors but it’s now behaving more aggressively.  60 days ago it was 1.2 cm x 0.7 cm.  Per this scan, it’s now 2.1 cm x 1.6cm.  There is more contrast and it’s looking higher grade than before.  We’ll perform what’s called a perfusion MRI very soon which is the best way aside from biopsy to try and determine grade.  Grade 3 tumors can behave this way - it doesn’t mean it’s higher grade. 

On the positive side of it all, there are a lot of options on the shelf.  The only option that isn’t available is partial brain radiation.  My brain has already been treated with 60Gy which is the maximum so we can’t go there.  There are other modalities of treatment however that can be used to attack the problem.  Certainly surgery is one and if that is the choice, it would be less complicated from a recovery standpoint because last time I followed the surgery with 5 weeks of radiation w/concurrent chemotherapy.  Radiation won’t be part of it if that is the option taken. 

The fMRI from yesterday also mapped what areas of motor strip in my brain control certain motor functions in relationship to the location of the brain tumor.  This technology, which the Neuroscience Institute didn’t have a year ago (they had something called “brain lab” which was sort of step down, less precise method of mapping) provides for much more precision when resecting a tumor in ensuring that neurological function is preserved.  Of course it’s brain surgery so it’s always risky but the fRMI is a huge help and a risk mitigator.  Secondly, there is Gamma Knife.  I don’t know if this is an option or not.  If traditional surgery is, this might also be an option in lieu of survery.  It’s a preferable option if it can be just as effective because it’s a non-evasive, walk-in/walk-out, same day treatment.  Most rest for a few days then get back to normal actives in a few days - slowly.

Chemotherapy will be something I’ll have to resume at some point but not now.  I have to stop the growth so that’s the first order of business.  As I said though, the previous surgery set up future surgeries.  My neurosurgeon did a few things to provide easy access to the area of the tumor so getting to the area is much easier and quicker.  The fMRI will be of great assistance.  The fact that it has grown and I have been leading a normal life the last 60 days (1 mild focal seizure) seems to tell me this growth isn’t pushing up against the motor strip (theoretically anyway) so it’s a matter of sitting down with the team and making some decisions. 

More later but we need to figure some things out.  Is it hard?  ABSOLUTELY!.  This sucks.  But we can’t do anything about it.  I worry about finances, going on leave, impact on my family and all kinds of things.  I worry about everything else more than I do myself but we have to put all of that on the side and just focus on what we can for now.  You see, we can’t have it double again.  It can’t evolve into a grade IV.  So we fight - we hammer on it in the best way possible within whatever constraints we have in life.

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Tags:  blood brain barrier , Brain Tumor , Faith , MRI , MRI enhancement , My Story , oligoastrocytoma , primary motor cortex , seizure

My next scan was originally scheduled for October 6th but I have experienced a few focal seizures over the past several weeks that have made us decide to move this up and take a look now.  The last seizure wasn’t real severe but was enough that I took some additional meds to put it away.  This time we are doing something different, too. 

The type of imaging study that is being performed this time is an fMRI, or Functional MRI.  Subjects participating in a fMRI study are asked to lie still and are usually restrained with soft pads to prevent small motions from disturbing measurements. This really isn’t any different from a standard MRI - you’re always given pads around your head and arms.  Anyway, the primary difference with an fMRI study as compared to a standard MRI (both can last 1-2 hours - how fun to be in a “tube” that long, huh!) is subjects may view movies, hear sounds, smell odors, perform cognitive tasks such as memorization or imagination or in my case, press a few buttons and perform other motor function tasks using my left-side (recall I have a right-frontal brain tumor - deficits are contralateral so we want to see impact to the left side).

So, put simply without getting into a lot of scientific jargon, the goal of this is to “map” more or less the areas in and around the tumor that are directly affecting certain motor functions (the movement of my left shoulder, or knee, or fingers for example).  When we know that, we can determine what areas of the tumor could be relatively safe to debulk with limited neurological deficits - at least in theory.  Nothing is without risk.  After all, this is brain surgery.  So, we’re aren’t preparing for surgery here at all but given the seizures we need to see what is going on.  We’ve been watching it every 60 days so this time we just moved it up a bit - no big deal.   

Here is a picture of an fMRI machine to give you an idea of the environment.  Again, getting tubed an hour or two (and sitting absolutley still) is a chore, but I have done ok with it so the technicians have said.

And guess what?  I can’t do anything about what is going on, can I?  Nope.  I pray for the best outcome.  We know that God is in the middle of our lives - Rachael, Aidan (6) and Keegan (1).  It’s certainly hard not to let physical symptoms get to you - I won’t lie.  But when they do, you just have to keep rolling along.

I’ll post results here when I can.  As I mentioned before - the lack of posts means I’m doing good!  I’m enjoying life.  Soccer has been a blast with Aidan.  Being involved, running around a field in soccer clothes (I used to play competitively) and playing with him and all of his team, helping with the coaching and teaching the kids - what a great experience and just a few months ago I was on chemotherapy. 

More in a day or two….

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Tags:  Brain Tumor , brain tumor survivor , Faith , fMRI , MRI , MRI enhancement , oligoastrocytoma , Oncologist , seizure

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

Thank you all for your thoughts and prayers this week - they are so appreciated. To cut to the chase, my studies came back and showed stability with no growth! Needless to say we are so happy. There are some interesting observations to be made regarding the results that I will get into but the real take away here is that everything is stable and either my treatment is effective or the tumor itself is just not growing. I have discussed before that there is really no way to prove that ongoing chemotherapy is the reason for stability, however, given I had experienced tumor growth between January 2007 and May 2007, had surgery in June and then from that point forward I have had stability we have to assume the radiation and chemotherapy are doing the job along with supplements and other steps I have taken in my life.

Now to the results. I will spare all of you the report details and just paste in the impression section from each study which is the most important.

5/27/08 MRI Brain w/wo and Perfusion MRI

IMPRESSION: NO SIGNIFICANT CHANGE SINCE PREVIOUS EXAMINATION. THE PERFUSION STUDY DOES NOT SUGGEST A HIGH-GRADE LESION. THERE IS A SLIGHT DEGREE OF GADOLINIUM ENHANCEMENT SIMILAR TO PREVIOUS STUDY SUPERIMPOSED ON AREAS OF INTRINSIC HIGH T1 SIGNAL.

This test included essentially two parts - a standard MRI that looks at the tumor anatomically - I always have this every 60 days and that has been coming back stable. A second study was run that I have never had before that is called a Perfusion MRI. This is a special technique for evaluation of microscopic blood flow in cerebral capillaries and venules. It basically creates what is called an MRI perfusion “map” of a high grade brain tumor and demonstrates areas of increased capillary blood volume in the tumor. This technique is used quite frequently to demonstrate areas of a tumor with highest malignancy potential to aid biopsy planning (a biopsy should target the highest malignancy areas because the WHO grade of a tumor is based on the highest grade cells found in the tumor).

Ok, out of breath now but I think it’s good to understand this stuff. You can always blow by all of this stuff if you want of course. So what does this impression above mean - it says that it doesn’t suggest I have a high-grade lesion? Huh?! Well, we know I do. Pathology resulting in a grade 3 oligoastrocytoma dx trumps any imaging studies. However, to put this in simple terms - when a tumor is growing or becoming more aggressive, it requires more blood. To acquire more blood, it needs to increase vascularity (growing more veins basically) which allows more “throughput”. This study says that this isn’t happening. GOOD NEWS! On to the PET scan.

5/28/08 Brain Imaging PET Metabolic

IMPRESSION: THE PET SCAN HAS REMAINED UNCHANGED COMPARED TO THE PREVIOUS EXAMINATION DONE ON 03/15/07. THE LESION IN THE RIGHT POSTERIOR PARASAGITTAL FRONTAL LOBE IS RELATIVELY HYPOMETABOLIC SHOWING UPTAKE APPROXIMATELY EQUAL TO NORMAL WHITE MATTER AND SUBSTANTIALLY LESS THAN GRAY MATTER. THIS WOULD ARGUE AGAINST A HIGH-GRADE NEOPLASTIC PROCESS BUT DOES NO RULE OUT A PERSISTENT LOW GRADE NEOPLASM.

PET stands for Positron emission tomography and is an imaging technique which produces a three-dimensional image or map of functional processes in the body - in this case the brain. Without getting into major details, like the perfusion test above, it will look to see if there is metabolic activity - we want this test to come back showing that my tumor is hypometabolic, not hypermetabolic. Also, what is typically done is the PET “map” that is generated is typically overlayed on top of the MRI scan so the Neuroradiologist can look at anatomic and metabolic views (what the structure is and what it is doing biochemically).

Ok, having said that, no change since my PET scan in March of 2007. This is great news. Also, like the perfusion study, they concluded that this would argue against a high-grade neoplastic process (high grade tumor). Again, we know it is so the take-away here is it’s not growing, it’s stable and metabolically it’s not changing. This is all great news!!

For those interested, here is an image of a Brain PET/MRI fusion:

When first looking at these results, it would be easy to think I have a lower grade tumor but that simply isn’t the case. I saw the results and it created confusion at first. I thought “this is odd - this completely contradicts the pathology?” However, I remembered, too, that mixed gliomas can behave like low-grade tumors on film as well - and they can fool many neuroradiologists into thinking they are in fact low grade or even infarcts related to strokes if being discovered for the first time. This is why it was so important that I had everything looked at by UCSF and Mass General back in May of last year.

And speaking of that, it has been a year since I was “officially” diagnosed. We knew well before that time what we were dealing with but the official diagnosis came down in May and here at the end of June it will be 1 year since my craniotomy - and 2 weeks after my craniotomy my 2nd son, Keegan, was born so he will be having his first birthday. Needless to say, we will be having a much calmer June this year than we did at this time last year. It’s hard to even keep things straight when thinking back to last year - it was surreal. But I will say this, we know that we can walk through anything. Our family has endured. And we know that with God’s guidance, we aren’t alone in any of this. This type of trial tests every ounce of your character. It pushed us to what we thought was the brink only to find that it was going to get harder. But we knew that it was temporary as hard as it was - one day at a time we could walk through it. Life is hard sometimes which is why we have to enjoy every day. Are blue birds singing at my window or yours every day?! Nah. But, some days they are! And the more I can focus on the positive in my life, what I have today - my family, my two wonderful boys, a renewed appreciation for the gift of life (really, I think human nature just does this if you are faced with a diagnosis such as mine) and so many other luxuries that many in the world don’t have.

Thank you again for your thoughts and prayers. A big week indeed. I will continue on chemo - we talked about that. It is harder as time goes on - your marrow keeps getting hammered and after awhile it basically says “I keep getting up and then I get hammered again so why should even try recovering anymore!”. Therefore, the fatigue sets in more consistently. But, I’m finishing cycle #8. I want to make it to 12 - 1 year. Then I will finish. Both UCSF and the Neuroscience Institute agree that if I can tolerate the treatment it’s the best course.

Keep on going….

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Tags:  Brain Tumor , Brain Tumor Research , Faith , gadolinium , MRI , MRI enhancement , PET Scan , prayer , Resources (Brain Tumor) , supplements

Just a really quick post this AM.  This is a big week for me - I could really use your prayers.  Today I have my standard 60-day MRI.  Tomorrow I’m having a PET scan.  For those that don’t know, a PET scan looks at a brain tumor from a metabolic perspective instead of anatomically which is how an MRI views the tumor.  It produces a 3-dimensional image or map of the tumor and detects what is called a “tracer” which is in the form of a radioactive isotope that is injected into your blood.  In my case, the tracer, if my brain tumor is highly active, will race to the tumor and the results of the PET will show “high metabolic activity”.  Glucose is in the tracer and if my tumor is in a state of high metabolic activity, it will feed on glucose.  Therefore, the tracer will “pop” on images where this is taking place.  This is the easiest way I know of to explain it!

When I had the PET in March 2007 the results indicated “relatively low metabolic” activity which was consistent with a stable or low grade tumor.  Of course I found out in June when I had surgery and a biopsy that my tumor was a grade 3 oligoastrocytoma so the low matabolic activity was more due to stability than a low grade tumor as grade 3 is a high grade tumor.  

I did something to my back over the past several days so I am NOT looking forward to laying on these tables for an hour at a time over the next several days!  They aren’t the most comfortable in the world, particularly considering you have to remain very still.  Here is a picture of the PET equipment to give you an idea.

On Thursday I meet with my Neurosurgeon and Neuro-oncologist to review everything.  So, a big week indeed.  I always have some anxiety when I have scans - but I turn it all over to God.  This isn’t my plan here and if I took it all on myself I don’t know where I’d be today.  But even still, it makes me feel anxious re: results is all, particularly because the MRI is here and now.  The PET is tomorrow so I won’t worry about that one…

So if you think about it and are reading this, a short prayer about positive results would be much appreciated.  Your support has been great!

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Tags:  Blood Sugar , Brain Tumor , Christian , MRI , My Story , Neurosurgery , PET Scan , Pictures , prayer

Some good information should be available on Monday from UCSF.  For those of you that are not aware, The University of California, San Francisco has a Brain Tumor Center and it is one of the best in the country - certainly on par with Duke, Mass General, UCLA and others. Dr. Mitchel Berger, the head of the Department of Neurosurgery is performing a film review of my most recent set of MRIs which is something I have done on a number of occassions.  You may recall that he along with Dr. Peter Black at Mass General both agreed that I should have surgery back last June which was contrary to the opinion I was given here at the brain tumor center.  I have relied upon Dr. Berger ever sense from a radiological perspective to interpret my scans to ensure I have this second checkpoint.

In addition, I have been on the phone with the UCSF Department of Neuro-Oncology.  I am seeking another opinion with regard to my go-forward chemotherapy strategy.  For this case review, I have sent them just about everything.  MRI films, pathology, operative reports, 1p19q gene deletion test results, recent lab work, recent dictations from my Neuro-Oncology appointments, etc.  This review will allow me to have another opinion now that I have finished the 6 months of pulse therapy using Temodar which is the standard of care.  After 6 months, there isn’t a lot of information in terms of the right course to take - do you stay on chemo?  How long?  The same type?  Lots of questions.  Some with brain tumors may not know that in many cases you can contact brain tumor centers and facilitate these types of reviews with some footwork and organization.  It is WELL worth the effort and logistical challenges. 

So, on Monday or Tuesday of next week I should have opinions / impressions related to my scans (growth, stable, etc.) - and the verdict here has been stable all along and back in October of last year Dr. Berger concurred that all was quite stable.  I will also have the complete case review from a Neuro-Oncology perspective which will provide me with great information moving forward.

I was able to get some information through some connections from Dr. Jonathan Finlay who is at UCLA.  His response, to me, was shocking - he said the standard is to stop at 1 year which is consistent with my understanding but that he personally has his pediatric and adult patients continue INDEFINITELY as long as they have residual tumor present on MRI.  Wow.  Long term risks such as leukemia come into play with these drugs but I’m sure he views the long terms as the lesser of two evils so-to-speak, particularly if you’re dealing with grade 4 tumors.  So, we’ll see what UCSF says.

More to come next week.

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Tags:  Brain Tumor , chemotherapy , Dr. Mitchel Berger , MRI , Oncologist , tumor , UCSF

My MRI came back as stable disease again!  Needless to say I am so happy.  My Neuro-Oncologist has indicated that to have stable MRIs like this is a great sign.   Considering I have been tracking this since 12/2006 and I intervened in 6/2007 by choice with surgery, IMRT radiation and now 6 months of chemo and a very deliberate, well thought out set of supplements, I feel very good about the plan and path I am on.  A grade 3 tumor is an aggressive tumor and that coupled with a 0% resection - well, I felt that my odds were stacked out of the gate but I didn’t hold on to thought for long.  I’m here and by the grace of God we’ll continue on one day at a time.  And I’ve said it before - the tasks ahead of me are never greater than the power behind me.

 It’s getter late for me given my fatigue lately (who would think that 8:30pm is late!) but I’ve been sleeping a lot for the last 3-4 days.  But thank you SO much for all of the emails and the several comments posted here - your thoughts and prayers mean everything and they absolutely make a difference.  Thank you Thank you!!!

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Tags:  Brain Tumor , MRI

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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Tags:  Brain Tumor , brain tumor survivor , chemotherapy , fatigue , God , IMRT , MRI , oligoastrocytoma , prayer , Radiation Therapy , 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