Home » 2008 » February

Quote of the Day:

I think I should have no other mortal wants, if I could always have plenty of music. It seems to infuse strength into my limbs and ideas into my brain. Life seems to go on without effort, when I am filled with music.
- George Eliot
Feb 28

Chemotherapy Plan

Chemotherapy No Comments »

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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Feb 22

Quick Post

Chemotherapy, Side Effects No Comments »

Last night was most interesting. I was very tired and went to bed at 9pm. I took my dose of Zofran (anti-nausea medication) around that time as per usual and then…..I drifted off to sleep! I typically take the Temodar dose about 1/2 hour after the Zofran. In 9 months this has never happened. Aidan is sick right now so around 1am he was having a coughing fit and it woke me up. I honestly hadn’t even realized I didn’t take my chemotherapy medication. I took some cough medicine into Aidan and when I came back to bed I jiggled the medicine cup I put on my nightstand when I go to bed and all the pills were still there. So I took them. What I learned was that the anti-nausea medication absolutely works! I had taken it 4 hours prior instead of 1/2 hour and I slept horribly, felt my stomach tightening up a bit and just didn’t feel that great. It wasn’t seriously bad but I could feel the effects. This morning, when I got up I didn’t feel good. I immediately took another Zofran (which I never have to do in the AM) and ate something and now I’m feeling fine.

Anyway, no huge problem but you live and you learn. For me, taking this when I’m sleeping is key. I sleep pretty hard even though I wake up a few times a night. So long as I take the anti-nausea medication 1/2 to 1 hour prior to the chemo, things are good. I’ll be trying to 5-day here in about 2 weeks so I’m sure it will be bit tougher but I will just take Zofran 3x per day instead of just once at night which I’m doing now.

It’s supposed to rain all weekend here – we had a storm here in January with wind gusts up to 60mph. Since Sacramento is the tree capitol of the world second only to Paris, France, it was a mess. The storm on Saturday is expected to have gusts reaching 70mph so I’m sure there will be a lot of downed trees and limbs. Nonetheless Rachael and I are going to a restaurant called The Waterboy on Saturday night. It’s supposed to be really good and we’re trying to get out with some regularity. We need to.

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Feb 21

Quality Time

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It’s been awhile since I’ve posted – mostly because I’ve just been busy this week with the kids and obligations. Next week is going to be very busy. I have an appointment with my neurologist and oncologist. I haven’t had a simple partial seizure for awhile though which is great news! So, my medication levels with regard to Lamictal and Topamax, the two anti-seizure medications I take to control them seem to be adequate.

Aidan and I had a really fun time last Saturday and I have posted some pictures here. I have posted before about how he earns “tokens” when he exhibits certain behaviors we are wanting to instill in him such as listening the first time, picking up his toys, praying by himself, etc. Once he reaches 10 tokens, he gets to have a reward which is not material in nature. So, he chose ice skating! There is a great rink not too far from our house. They have two NHL regulation sized rinks and on Saturday mornings they have public skates from 10-noon. It is hilarious seeing all the kids skate around with the “walker-like” devices. These are a great invention – they are similar to walkers people who are older use but slide on the ice and allow the kids to get used to the feel of the ice. Aidan was tentative at first but he is fearless so after about 5 minutes he was trying to skate fast, spinning in circles and wanted to race me. He is so funny – he will try anything at all. Of course he wanted to try it without the walker so I skated away from him several times – about 5 or 10 feet and he would fall. Not wanting to be seen in that position he would try to get up really fast and fall again! I told him to just slow down and helped up off the ice and back to the wall. It was so fun though – he and I just had a great time. He had such a good time that he wants to do that for his next “reward”. We of course do things outside of the reward system but we set up some special things like this as motivation. The tokens he earns are cool colorful magnets that he gets to put on a board in rows next to magnets that have labels with the behaviors written on them.

So how fun! It was a great example for us of spending quality time together. These are the moments that I really cherish and again, it wasn’t that I didn’t before but as a brain tumor survivor they take on a different meaning. Honestly, none of us really knows how much time we have left but I do know that I have a serious health condition. Brain cancer is not something that you survive into your 70s and 80s! So, I take each moment like this and soak it up. What a great day we had!

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Feb 15

5-Day Chemo Regimen

Chemotherapy, My Story 2 Comments »

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.

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Feb 09

Next Steps & Enjoying Life

My Story 2 Comments »

In discussing my scans with my oncologist, there were no revelations of course. However, I did get into a lengthy discussion about the 6-month decision point. I also talked with her about my fatigue and we discussed some options. At the 6-month mark, I will likely stick with Temodar for another 6 months. At one year, I would come off of chemotherapy altogether and then just watch it and see what happens. This is all assuming there is no growth detected and that I continue to be asymptomatic. If there is growth, then other options would be brought to bear. After a year of Temodar, the effectiveness of the drug is really called into question when balanced against the effects it has on one’s body. There are people that are on there 20th, 25th or even 30 some odd cycle of Temodar but my oncologist really believes this is far beyond the drug’s ability to be effective.

In terms of fatigue, she suggested I could try the 5-day a month chemo – it does fly in the face of what I’ve been doing in terms of studies that have shown increased survival rates when taking the drug every day (I opted every other week due to my lifestyle and families’ needs) but nonetheless, it was placed on the table. There is also a regimen of 21 days on – she said most don’t even realize you are on it. I can try both but I’m in a routine and am not sure I want to. The 21 day is definitely not something I want to do. The 5 day increases the dose from 295mg to 400mg – not sure how that would be. Fellow survivors that I know who are on that regimen have varied success – some are just fine with it, some have some issues with stomach aches/tightness and others have very bad nausea. I have done fine with Temodar so I may be ok but I might stick it out.

Today was a good day – we packed a picnic and went to the park. Keegan was happy on the blanket and Aidan enjoyed himself. For Rachael and I it was good to get out and enjoy some time – the weather here is unseasonably warm – in the high 60s so that makes it perfect for an outing like this. Seeing Aidan grow is amazing. He has no fear. He’s going down steep hills on his Razor and picks up such high speeds that it makes me nervous! He starts wobbling and correcting his steering and I’m just ready for a major wreck but he pulls it off every time. He’s fallen but he always gets up and dusts off his pants and keeps going

It was a good day.

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Feb 05

MRI Results – 02/04/07

My Story 1 Comment »

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!

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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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