I’ve received a number of requests for more info regarding tomorrow night’s meeting. Here is a PDF w/ info. Thanks for your support! It should be a fun night.
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My temodar treatment has been going well. I have some nausea in the morning and use zofran for that but things are good. More pressing is my left arm and shoulder.
Essentially the muscles in my shoulder, bicep, forearm and sometimes wrist/hand contract and tighten up involuntarily sometimes. This just freezes it all up. Because this has happened so many times, on top of seizures, a few falls and new lesions – the pain is terrible while under this tension. I have an appointment later this month wiyj a nuerologist who injects Botox into the muscles in these cases to loosen them up. Hopefully that will quell this pain. I have another appointment next Monday for Avastin.
IF you’re in the Sacramento, CA area, I’ll be speaking at UC Davis on Thursday night at 6:30pm at the brain tumor monthly meeting. Use the contact form if you’d like information.
We were able to get away this weekend to Bodega Bay. It was so nice! Being on the coast withe wind in my face felt good since I havent been home to SoCal for 5 years. Here are a few Pictures fron Bodega Bay:
More later. God Bless!
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Web address: http://www.sciencedaily.com/releases/2010/04/ 100401173713.htm |
ScienceDaily (Apr. 1, 2010) — For several years, researchers have been developing a new approach to treating cancer that uses viruses to infect and kill cancer cells while leaving normal cells unharmed. Recent data have indicated that this approach, which is known as oncolytic virotherapy, has potential.
Now, Richard Vile and colleagues, at the Mayo Clinic, Rochester, have found that this approach can be combined with a standard clinical therapy to provide substantial regression and cure of tumors in mice, leading them to suggest that this combinatorial approach could be of tremendous benefit in the clinic.
Tumors that grow to a certain size need to form new blood vessels if they are to continuing growing and spread to other sites. One of the molecules that controls this new blood vessel growth, VEGF, is the target of drugs used to treat several forms of cancer. In this study, the authors found that modulating VEGF signaling, for example by transiently stopping anti-VEGF therapy in mice harboring cancer cells expressing high levels of VEGF, allowed the cells that line tumor blood vessels to be targeted and killed by viruses.
Importantly, as this approach targets the cells lining tumor blood vessels, rather than specific types of tumor cells, the authors suggest that this combinatorial approach to therapy could be used to treat a wide range of cancers.
The research appears in the Journal of Clinical Investigation.
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I’ve quietly been upgrading the blog software behind-the-scenes. I am now beginning to add more functionality such as making the blog accessible from blackberries and iPhones as well as adding small improvements such as threaded commenting and the ability to share posts through more of the social networking sites.
As for the mobile application, as with many it’s a scaled-down version of the blog. I can post to it from anywhere and readers can read the posts, comment on a post and use the contact form to contact me. All of my research is also there.
Here is a look at a few of the blog screens on an iPhone:
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I’ve been looking around for some “brain exercise” or fitness apps/tools to just exercise it for sharpening. I believe that it’s important, particularly with short-term memory lapses ocurring from time to time. Looking at it as a muscle, it needs work. For me and my various areas of focus, mental fitness is something that must be maintained as much as possible. Just as going to PT, I have to exercise my brain. I am fortunate to have the ability to work and do well but I need to stay ahead of the curve.
Ideally, I was searching for an iPhone-based app(s) so I could use them anywhere. I targeted apps that would work on my cognitive training/endurance through various methods whether it be spatial recall, logical reasoning, etc. I searched in the appstore and finally came across a great set of tools from Lumosity.
The first, Memory Matrix is great. It’s simple but at 9-10 squares it’s challenging and definitely pushes mental fitness. There are other features of the lumosity web site that I haven’t explored as I was mainly after these mobile apps but it appears you can track much of what you do, leverage online tools, etc. Speedmatch is another one that is worth downloading or using online.
I’m getting ready to plan my next DCVax injections. I’ll be doing this next week hopefully. I’m feeling better – counts are better. Still working against fatigue and having to work harder on PT. I’m feeling additional weakness on the left. These are all things that I can’t change although this run has been a bit tougher. I certainly can’t deny that! At the end of the day, however, it’s in God’s hands. I’m following the path but it’s really not about me – He’s not done with me and I just keep seeing examples of that.
I’ll post about this later, but a gentleman at work just learned he has a brain tumor – a primary and based on what I see it’s a mixed glioma. I’ve spent some time with him and he’s found some information here that has helped him. I know I didn’t have someone, or many, to talk to in-depth about what’s next, how did this go, etc. I feel that if he has to go through it, I certainly am there to help. I’ve walked down the road.
Pray that all are well,
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As I mentioned I had an MRA to try and find out why I’m having these headaches. The test was negative – everything looks perfect. One of the images that the MRA produced is shown here – pretty fascinating. We were just looking to seem if we could find a blood clot, embolism or some other reason why I would be having such awful headaches but everything looks fine. The imaging is amazing though.
It’s too bad that everyone can’t just get scanned. Not this type but just an MRI. There is a program in NYC – a mobile MRI unit that drives around and allows volunteers to take advantage of technology. I can’t remember the stats that I read, but it was staggering to learn that just normal people going about their daily business were walking around with brain tumors
Anyway, now that these tests have swiped away this theory, I spoke to my doctors after getting lab work done and we believe there has to be an infectious process going on somewhere. My cell counts are ok. I don’t have a temperature at all but I’ve had the chills and the fatigue has been terrible. Another observation is my blood pressure (diastolic) has steadily increased since I’ve been on Avastin. THe last time it was taken it was around 90. So, the headaches could be due to hypertension. Lots of moving parts here.
I have an appointment with my general practioner today – perhaps some antibiotics and a review of everything will take care of this. For now, though, I have to wait on more treatment. ANother reason is my creatine levels are off the chart – 330, the highest they’ve ever been so my kidneys are screaming at me!! I can solve this by drinking a lot more which is what I will do. I usually drink a 32oz bottle of water at work and then a few glasses at home but it’s just not enough, particularly on Avastin.
More later.
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Just a real quick post – and I can’t believe I didn’t post this when it happened! If you didn’t know about it, the National Brain Tumor Foundation, an organization that I volunteer through to assist other newly diagnosed brain tumor survivors who are in need of support, merged with the Brain Tumor Society, another first class organization. The two organizations combined bring together the best of research and patient services to be a comprehensive resource for patients, families, caregivers, researchers, and medical professionals. This merge was completed several months ago and the you can access their web site by visiting braintumor.org.
One of the great services on the site itself is a message board. Register to use them. You can network with other survivors. This helps you – you are not unique. Many feel alone in the beginning, I know I did. After all, there are only 20,000 primary brain tumors diagnosed in the US annually – primary of course meaning it’s not a met.
Take a look – a great resource.
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I mentioned that we pushed the surgery one week to give us more time to seek a trial that allows me to take advantage of a new vaccine that is showing amazing results in GBM patients (GBM = Grade 4 brain tumors which is what my tumor have now become based on our impressions of MRI). The vaccine that is our focus is called DCVax-Brain.
DCVax uses a patient’s own dendritic cells, the starter engine of the immune system. The dendritic cells are extracted from the body, loaded with tumor biomarkers or ‘‘antigens’’, thereby creating a personalized therapeutic vaccine. Injection of these cells back into the patient initiates a potent immune response against cancer cells, resulting in delayed time to progression and prolonged survival. DCVax-Brain is designed to specifically target Glioblastoma Multiforme (‘‘GBM’’), the most lethal form of brain cancer. DCVax-Brain has entered a Phase II FDA-allowed clinical trial, which is designed and powered as a pivotal trial (i.e. a trial from which the antigen developer may go directly to product approval). Following this trial, the maker anticipates filing a biologic license application (or ‘‘BLA’’) with the FDA for DCVax-Brain.
Based on trials covering calendar year 2007, the long-term follow-up data are now as follows. Look, if you have been reading my blog for any length of time at all, you know I’m not someone that holds on to stats but if your journey in fighting a primary brain tumor moves into this territory, you have to look at this data if you are choosing alternative treatments. Fortunately for me, I have God working in my life so incredibly that my Neuro-oncologist is on top of the world of brain tumor trials, alternative treatments, etc. and we are pulling out all of the stops. So, go for a 100% resection next Wednesday and follow that up with the DCVax vaccine.
Data so far:
So, my humble request? Please pray that I can be enrolled in this trial. This trial will yield so many benefits for me and my family. It will extend my life, allowing perhaps other treatment modalities to come along and further extend my life. 26% of patients living longer than 4 years. That’s amazing. And some out 62 and even 92 months – with a GBM? Unheard of. So please pray for this and my second request is if you could pray for my surgery and my family – just that everything goes well, that my family has comfort and peace, can garner strength in the Lord and they do not forget He is there – that my young sons are protected and safe, are encouraged.
Thanks to everyone….
God bless
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on 6 months…moving forward can be difficult.
on 6 months…moving forward can be difficult. on Memorial Service Details on Current Status on CBS News: What’s Behind the Mystery Cancer Cluster?
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