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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
Aug 23

MRI Results – 8/19/09

MRI, My Story 3 Comments »

Before I left for Tahoe, I had an MRI as a recheck just to ensure I wasn’t experiencing any growth.  Sometimes an MRI is a result of a patient being symptomatic of course.  As you may have read, I had a fairly significant seizure so it was necessary.  My last MRI was July 12th which showed a reduction in size when compared to the May scan.  This MRI came back showing further shrinkage and it was done a little more than 30 days later.  The tumor cavity has further collapsed, showing that cancer cells are being killed off.  This is great news!

Several theories.  One is certainly my use of DCVax.  I started this in April and it may be moving in a very positive direction.  I’ve discontinued my use of thalamid – this was 45 days ago.  I want to see if that’s necessary.  I’ll know in the not-too-distant future.  The second is Gamma Knife.  This was done in March.  A third – use of Avastin every several weeks via IV.   We can also look at combinations of each.

My own sense.  It’s a combination of all three.  How’s that.  There is a theory with GBMs and perhaps many brain other primary brain tumors that you keep the tumor guessing to keep it simple.  The Gamma Knife blew away, as much as possible, a small nodule of growth.  The Avastin typically keeps it in check.  In spite of past failures using Avastin + CPT-11 (Irinotecan), we decided to use DCVax with Avastin.  I believe most of our success comes from DCVax.  I’m sure I put data here.  You can do a search on the site and find info.

We are very happy that we have had 2 scans showing a reduction in size.  We’ve only ever managed “stable”, never some positive success.  We’ve of course had failure along the way, such as last Octiber when my tumor was an Oligoastrocytoma 3 and went through an anaplastic transformation to a GBM that resulted in surgery.

A great weekend…

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Aug 03

Treatment this Week

Brain Tumor Treatment 1 Comment »

I’m back on track this week after the great MRI I had showing low or no bloodflow in and around the tumor as well as some shrinkage.  I’ll have appointments on Wednesday to resume Avastin infusions every other week.  The avastin really agrees with me well so I typically don’t have any problems.

An area I have been working on lately is my gratitude list.  It’s condensed – there are so many items but I have gone over this multiple times on my own and with my son, Aidan.  Simple things – a house to live in, food on the table, cars to drive, clothes to wear – private school for Aidan.  Some of these items we just take for granted but when you step back and look at the world, many of these are luxuries.  I can recall when we attended Saddleback Church in Southern California and Rick Warren would say that if you have a bank account, food in the refrigerator and a roof over your head, you are wealthier than 95% of the world’s population.  Hard to believe hut true.  But many people just cruise through with this luxuries in place and don’t realize how fortunate they are.  My son, only 7, is learning this.

I pray for all of the people out there who are walking through the journey.  I have a friend in Wisconsin that I spoke to today and he has a recurrence.  A small area of enhancement but he’s done well.  I believe he will continue to do well.  To Daphne and her husband – Robin, Stacey – many others.  Keep your heads up and have faith.  A lot of immediate concerns and needs and challenges.

I hope everyone is doing well.  More to come…

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Mar 30

Chemo Strategy

Chemotherapy, UCSF No Comments »

At this point I’m in full research mode on chemo.  The conservative recommendation is to continue on my alternative 7-day regimen through the 1 year milestone.  However, there are no studies or hard data to suggest that it improves survival rate.  The problem so far as I can see is that all of the research centers around and has resulted in the “standard of care” which is 6 months of “pulse therapy” post-surgery and radiation.  Once you get there, it’s up to your Neuro-Oncologist to set you on the right course.  Stop chemo altogether, switch to something else such as Tarceva, keep going with Temodar or if you have growth take more aggressive action obviously including surgery – both traditional and stereo-tactic radiosurgery.  So, no one of course can predict. 

My conversations have gone sort of like this:  So if I were to continue therapy, what has your experience shown in terms of liklihood of tumor growth vs. management for a grade 3 mixed glioma?  Well, it depends.  Sometimes they grow, sometimes they don’t.  And if I don’t continue?  Same result.  And I continue to the year marker and stop?  It could grow after that or not.  There are patients that stop and it’s stable for years and then some patients have aggressive tumors that grow quite quickly.

The bottom line for me?  It is a) in God’s hands at the end of the day but b) I have to research this just as I did with my decision to have surgery to make sure that I am making the best decision for me and for my family.  I am going to UCSF and having the look at my film again.  I am also having their Department Head of Neuro-Oncology look at my case and provide a second opinion (the conservative recommendation I have is to continue).  I am also digging around at Harvard for another opinion.  In concert with all of this, I am performing my own independent research.  As I have always maintained, you must be your own advocate – no one will do it for you.  I can go to my doctor and sit in a room and just shake my head yes or I can go out there and get good, solid info from some of the most imminent sources in the field.  The latter is what I want.  This is my life on the line.

That’s it for now.  For now, though, I have been off for a week and as a special present I am taking a second week off of chemo – yeah!  This is not a big deal since I have been by the book for 6 months.  Back on it a week from Monday but this is a welcome break.

Thanks again for all of your thoughts and prayers regarding my MRI.  They are SO appreciated.  The comments and all the emails I received mean so much to me.  You have no idea.  Thank you.

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Mar 04

NBTF Brain Tumor Community Survey

Support No Comments »

The National Brain Tumor Foundation and the Brain Tumor Society are launching a survey into the needs of the brain tumor community. From what I have read it’s one of the largest surveys attempted. I’m obviously going to participate and I’m getting the word out. So, please visit the NBTF web site news area and follow the link(s). As of the date of this post there is a link to a form to be “notified” when the survey is available (early March) – so that is any day now. If you are reading this later it may very well already be out there.

This type of information/data gathering is invaluable and will help serve not only our needs as brain tumor survivors but also those that will walk in our shoes in the future. Participate!

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Mar 02

The Complex World of Brain Tumor Treatment

Brain Tumor Treatment, My Story 2 Comments »

One of the most difficult aspects I have faced as a brain tumor survivor is making decisions around how to treat my tumor. In the beginning, there are a million different alternatives thrown in your face. I empathize with people starting this journey because it’s difficult. What do you believe? Who do you believe? Everyone has an opinion and most all of them come from extremely intelligent, highly educated professionals. Do you opt for a clinical trial right off the bat? You could, and it could be the one that makes the difference. It could also be a trial that fails. Or, do you opt for a treatment that has proven success – even if that success doesn’t sound appealing?

With any brain tumor you want to CURE this thing right off the bat. You want to knock it out. You want to employ a treatment modality that has the highest likelihood of doing the job. At the same time, you don’t want to kill yourself in the process! Tough situation. For me, it came down to a simple decision. There is a ton of research taking place – new discoveries are happening each year. I decided this was about utilizing a modality that would extend my life out as long as possible so trials that are now in Phase I or even Phase II could be proven out. If my tumor shows ANY growth, I will avail myself to these treatments but for now, I am adhering to the tried and true treatment that UCSF, Harvard, Duke, MD Anderson and many other experts have recommended in my case – and that was IMRT radiation for 5 weeks with concurrent Temodar and then 6 months of Temodar on an alternating weekly schedule. I am finishing my 6th cycle now. I will continue until 1 year and then stop, unless there is shrinkage in which case I will continue. If there is growth, then it’s time to look at trials and other “cocktails” and go off the beaten path. There is a Neurosurgeon at MD Anderson in Houston, Texas that found himself with a grade 4 GBM – he was faced with all of this. Guess what he chose to do? Radiation and Temodar. He has a wife, children and everything to live for just like anyone else.

We can all over-analyze this. I did. But in the end, for me, it was about going with tried and true methods that had the best percentages of extending my life out, increasing my survival rate and attempting to ensure that I’m here when even better treatments are available. The problem with clinical trials is that many of them require that you’ve had no prior treatment – if you’ve already been on Temodar, for example, you aren’t eligible for the trial. However, if you have recurrent growth, then you can jump back on. That’s my own personal strategy. But initially, I’m driving the car that has been manufactured for 40 years and has an engine that I know won’t die for awhile.  Of course this is a terrible analogy with regard to Temodar, because it, too, was a clinical trial just a few years ago and was found to be extremely effective fighting grade 4 astrocytomas (aka GBMs).  Researchers subsequently determined that this chemotherapy was effective fighting grade 3 astrocytomas and oligoastrocytomas.  This is just one man’s opinion, of course!

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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 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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