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

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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Tags:  absolute neutrophil count , Brain Tumor , chemotherapy , lymphocytes , lymphocytopenia , lymphopenic , Temodar

I finished up the first week back on chemotherapy last night and overall it went very well.  As I mentioned, I think my body wasn’t ready for it on the first night but by night 2 and 3 I was pretty well in sync with my system again - nothing to eat after 7pm, zofran at 8:30 or 9pm and then chemo treatement starts at 9:30pm as I go to sleep.  So overall I’m really happy with the way it went coming off of a 5-week layoff.  I’m also feeling good energy-wise.  I have some of the typical chemo-related fatigue but I don’t feel like I did before when my counts were so low - it was more or less just walking around feeling like I had a bad cold constantly and wanting to sleep! 

So another week on after taking a one week break and round 8 will be history.  If all goes well and I don’t have to pause my therapy for any other reasons, I will be completely done by November.  I will be taking a break for a week or so at the end of August for a vacation up to Victoria, British Columbia.  No, I’m not such a die-hard that I plan to be popping chemo pills as I gaze out of the hotel window taking in a nice view of the Empress hotel and Victoria harbor!  Speaking of vacations, that will be nice and we also have some friends who have a place at Northstar in Lake Tahoe.  She’s great and has been consistently “reminding me” to get up there so that is something that is in the plans too.  After last year and being tied to the house with a 2-mile rubber-band, it’s nice to think about these things and actually plan them out.

I’ll post again over the weekend - I hope everyone is having a good week and again, thank you for all of your continued support…

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Tags:  Brain Tumor , brain tumor survivor , chemotherapy , Oncologist , Temodar , tumor , zofran

After nearly 6 weeks off of chemo because of my low blood counts, the first night back on chemo went ok.  I will have to say though - how quickly I became used to a “normal” life absent chemotherapy!  Gone were the side effects including dry mouth, the more extreme fatigue (much of it was still with me due to low blood counts), some stomach tightening during the night and waking up needing to eat right away (it sort of feels like you have taken vitamins on an empty stomach if they affect you in that way).  I used my same system - no eating after 7pm.  Zofran at 8:30pm., Temodar at 9:15pm or so and then head to bed.  So it will take a little bit of time to acclimate to it again.  I’ll go from here.  I had started on round 8 so this is a redo.  That leaves 5 rounds left including this one.  It certainly will be interesting to see how my labs come back at the end of this round given the recent plummet.

I didn’t get a lot of sleep last night which is atypical compared to how my system was before.  Probably because I’m not in a groove with it just yet.  I was up from 1-3am.  Tonight should be better I’m sure.  One day at a time - but what is most important is that I’m fitting in more treatment.  I need to try to take as much as I can since afterall, I had a 0% resection because of location.  Once I get to a year, I won’t go beyond that because of the risk of leukemia so I need to keep things going.

Down the road we continue…

On another note, we have a large patio cover outside in the backyard and over the past 2 months, 3 different female birds have built nests in the rain gutters on the inside of the cover in different places.  As a result, Aidan has been able to see the whole process from start to finish - the newly hatched birds being fed all the way to the baby birds leaving the nests for the first time and sitting still on the patio, flying 3 and 4 feet and learning to fly.  It’s been a great experience for him to see all of this and ask questions. 

Keegan turns 1 on Sunday.  It’s been a full year since we went through an emergency c-section 2 weeks after my brain surgery - heading to the hospital at midnight.  What a night.  So we are going to have a party which will be really fun.  It’s going to be a quiet party for him which will be nice but we will celebrate his birthday and how far we have come in one short year.

That’s it for now…

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Tags:  absolute neutrophil count , Brain Tumor , chemotherapy , chemotherapy; Zofran , My Story , Temodar , white blood cells , zofran

I received my lab work results and the ANC has dropped down to 858 from last week’s score of 964.  Obviously this is in the wrong direction!  On the positive side, there is another count called an absolute phagocyte count and that looks reasonable.  However, this is not enough positive info in terms of my body recovering to start chemotherapy so I will hold off again for another week.  It’s a bit concerning but explains, once again, the fatigue and so forth.  The way I look at it though, as with everything else that’s transpired along this road, it’s all in God’s hands.  I have to give it up as usual.  Of course I have to do my part too.  There are no freebees.

If the ANC drops again next week then I’ll be more concerned and I think my doctors will be as well.  Then we have to start looking at other reasons for the drop.  At this point, however, we believe that I encountered a pretty strong virus not once but twice.  Even a healthy person’s ANC would take a hit, albeit not this hard, if they had to fight this off several times and the ANC can stay down for a bit.  We didn’t expect another drop necessarily.  I would’ve thought that after 5 weeks we’d be back in business!  Grrr.  What I am also keeping in mind is that the “standard of care” for my brain tumor is surgery/resection, radiation w/concurrent temodar followed by 6 months of chemo using Temodar.  I completed all of that like clockwork, not missing a single treatment of radiation or chemotherapy.  It wasn’t until cycle 8 or so that I started running into some issues with becoming sick.  The point is I feel good about completing the standard of care at least.  If this was going on in round 2 of chemo and I was having to pause treatment for a month or more, I’d be a lot more concerned I think.

That’s it for now.  Getting ready for the 4th of July!  It should be a great holiday. 

Happy 4th of July to all of you!

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Tags:  absolute neutrophil count , anc , blood count , Brain Tumor , chemotherapy , lab work , neutrophils , Temodar , white blood cells

Happy Father’s Day to all of the father’s out there. I will be picking up the phone to talk to my dad a bit later but am not feeling so well today unfortunately. I have ended up with a nasty cold again - nonstop cough, congestion, heavy fatigue and it came on just as I was starting round 9 of chemo on Wednesday night. I continued chemo until yesterday and each day the cold got progressively worse so I made the decision to pull the plug until Monday so I can speak to my neuro-oncologist. I have more than enough experience with this to know that if I keep going, I can’t ward it off. Chemo drops your white cell count - a harsh cold just won’t improve - your body can’t fight it off most times.

Of course the major concern whenever this happens is developing an infection, mainly Pneumocystis carinii which is why I take an antibiotic M, T, F indefinitely. I am nowhere near having this condition but it’s something that anyone who takes Temodar should be aware of.

So, I decided to skip church this morning and get some rest so I can go to my in-laws with my wife and kids to enjoy father’s day which is always a lot of fun. My son Aidan made some homemade cards which are always nice! So, I want to be there for that and that will be great! Tonight the LA Lakers, my team from the age of 7 are playing the dreaded Celtics, albeit down 3-1 so I will take that in and of course Tiger is on an amazing run at the US Open - who doesn’t love this stuff!!

I will talk to my neuro-oncologist tomorrow and regroup.

Happy Father’s day to all of you father’s out there. Every day is a blessing!

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Tags:  Brain Tumor , chemo hints; brain tumor survival stories , chemotherapy , fatigue , Temodar

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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Tags:  Brain Tumor , Brain Tumor Research , Brain Tumor Resources , brain tumor survivor , chemotherapy , Dr. Allan Friedman , Duke University , GBM , Neurosurgery , Radiation Therapy , Temodar

I believe I’ve mentioned that I’ve been feeling a lot more fatigued lately than before.  I have also picked up some type of flu - pretty much just hit me head on so I didn’t start chemo yesterday as planned and will likely hold off for several more days until I can see how my body does with warding this off.  I can’t tell if it’s a 24 hour issue or some other type of flu.  Not fun though!  So, I’m having to pause my chemo which is not preferred at all.   On another note, we performed a lot of work on my blood to try and understand the source of the nosebleeds and bleeding in my mouth that I have experienced on a few occassions.  No such info came out of the analysis - platelets and specialized studies on them are fine so at this point it’s “unexplained”.  The bleeding has subsided so that is good by I’m an answer man so I’d obviously like to undertand what the issues are related to.

I can really tell a difference when I don’t have the anti-convulsants on board.  I didn’t have any until mid-morning today after missing last nights dose completely and I woke up today with strange sensations in my lips and left hand - the same numbness that I felt in Dec 2006 that started me down this course.   Obviously this is just a staple in my regimen (the ACs) but it has completely straightened out the focal seizures I was experiencing. 

Aside from this stuff, everything else is going well here.  Aidan and I are involved in a soccer clinic on Tuesday evenings which is a great night out for us.  He’s learning the rules and techniques of soccer and I’m participating with him.  I played competitively growing up so it’s great doing this with him.  He really looks forward to it. 

I think I mentioned that at the end of this month I’ll be having an MRI Spect and a PET Scan - the PET should produce great info looking at it metabolically for the first time in a year (I had a PET last March).  Standard MRI looks at the tumor anatomically wheras a PET scan can look at it from a metabolic standpoint - how much or little metabolic activity is taking place.  If there is high metabolic activity detected via PET, that could be an indication that the tumor is on the move.  We are so blessed to have the technologies we do - and to be in a position to use them.  I remember that every day.  There are so many that live in coutries and are in socio-economic groups that don’t allow them to access this type of healthcare.  We don’t know how good we have it here.  I really don’t think most of us do.

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Tags:  Brain Tumor , chemotherapy , MRI , My Story , PET Scan , Temodar

Although I am still waiting for formal documentation, I had a discussion with the Department of Neuro-Oncology at UCSF on Friday evening.  After going through all of my information they are in agreement that the tumor is stable  and that it is in no way worse.  This is great news!  He also indicated that they concur that staying on for another six months would be the right course given my tolerance of Temodar, the stability of my tumor and the fact that my blood work is allowing my body to withstand continuing treatment.  They agree that stopping at a year makes sense, primarily due to the side effects - namely leukemia. 

I asked what course should be taken at a year - of course that is the million dollar question!  They recommend that I stop and if there is growth after that, surgical intervention is likely the best course given the location (primary motor cortex) and the fact that I had a 0% resection in my last surgery.  As long as I am neurologically in tact, which I have been throughout, that is the last thing on my mind and on the list. 

I will have a comprehensive report hopefully tomorrow or Thursday but this gave me all I needed to continue Temodar - cycle 7 started last night.  On we go.  I’m sure there will be some details in the report that will give me more information and I’ll share that here but at a high level, this is what I was after.

Again, second opinions are important.  This one came in consistent with my Neuro-Oncologist’s recommendation.  The interpretation of my MRI scans, too, were consistent.  Great - I have the assurances I need to move forward and it I feel 100% confident that I am moving on with a treatment plan that is the best for me, my lifestyle and my family.

More to come….

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Tags:  Brain Tumor , Brain Tumor Research , chemotherapy , Dr. Mitchel Berger , Oncologist , primary motor cortex , Temodar , UCSF

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