There are other vaccines being researched and developed and perhaps one day a vaccine may be the answer to prevention. The answer of course is what so many are seeking. Take a look at this story on MSNBC regarding a vaccine, for melanoma when you have time – the concept is similar to DCVax but of course DCVax is not harsh as this apparently is given it has to be administered in the hospital.
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Injection today. All of the standard labwork came back fine so the vaccine was sent overnight as usual. This really provides us with a lot of hope for us.
Among a number of emails I received, one really stood out. A mother emailed me to say that her family has been on this journey for 13 years since their daugther was 22 yeard old. They are at the hospital today for more treatment. So a prayer goes out to her and her family and friends that all goes smoothly and they are left with comfort and peace knowing it’s another step in fighting and getting out in front of this disease.
For me and I think I can speak for my wife (to some extent anyway), I think this is the essence of living with a brain tumor and how it involves the entire family in different ways. Support is certainly important – a key component of living life with a brain tumor. Closing off to the world never accomplishes anything.
From the family perspective, I just can’t do what I used to be able to do – climb ladders, blow through a list of items I want to get done. I get tired. I don’t feel how I used to feel. It’s different. I enjoy life though. It’s an adjustment for everyone. Even after everything we’ve walked through, there’s a continual need to adapt. My family can’t really know what it feels like just like I can’t really understand how my wife feels watching this unfold, trying to understand why I can’t be up for outings or errands in the afternoons, etc.
The more understanding, compassion and reciprocation that can be continued – realizing the better or for “worse” part of most of our vows and those limitiations, the better we do. Let’s face it though – this is a complex situation! This is but one part of it but coming together, organizing your treatment plan, being your own advocate and not taking a doctor’s first recommendation as the defacto answer. All of it comes and came together for us. But there are times when it can unravel and does. We all stumble but it’s a matter of continuing.
Was that a tangent? I think her email just inspired me and reminded me, again, of all the people in all kinds of circumstances face this – and many for a long period of time.
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Our 2 year old son Keegan had his second set of tubes put into his ears this morning. If any of you have ever had your children go through the tube surgery, it’s rough when they come out of it – confused, sleepy, etc. He did fine and is at home. We set him with an Elmo video and he was a happy boy. We’re hoping this is the last surgery!
I have another vaccination tomorrow. I’m so thankful that we were able to make 3 years worth of vaccine from the tumor tissue and white blood cells taken back in October and January respectively. So far so good.
I am still struggling with seizures. Recently they have become slightly stronger and longer in duration – at least 5 minutes and it concerns me. I might be pushing too hard – not sure. Actually it’s a combination of several factors. Sometimes it’s easy to find myself wanting to tackle so much . I’m used to making long lists and blowing through them. I think when I let everything in – combining my profession with my medical needs – appointments, a mix of meds to keep straight and track, treatment options, and most importantly my family and time with my kids can just get to be overwhelming sometimes and I’m in that place today – at least at the moment. I’ve spent the better part of the last week trying to sort this out with my neurologist and neuro-oncologist.
We’ve increased doses, lowered some, added a med, etc. I’ve run into some vision issues after changing some so we’ve made other changes and the seizures start again – every few days perhaps. It’s a matter of finding a balance but it’s a fine line. What complicates the seizure control is I have been told that because of the location of my tumore (on the motor strip), seizures are likely to increase in frequency/severity post-gamma knife up to about 6 months. I can only chase the problem to a point but it’s hard to get out in front of them. I don’t want to go on decadron or any other steriod to reduce swelling because I’d have to stop treatment at that point.
More to come – this to me is really a small issue in spite of dedicating a post to it! The good news is the tumor was stable as of the last MRI – and I just need to stay in today as I always say. Sometimes the frustration boils over this morning was one of those mornings.
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I didn’t have a chance to post the most recent MRI images so I’m posting a number of them here – mostly “top down” views to spare the medical terminology. The last is head on.
What is interesting about the first set here is you can see as the scan slices move through the brain, the center of the tumor appears to be dying – and there is likely some necrosis. This is something that can come along with gamma knife surgery. But you can plainly see that as the images progress from top to bottom there is a “hollowness” for lack of a better term which is – well, better than growth! Necrosis is scar tissue but in my case we don’t believe resecting it will be an issue (some survivors have to have this removed to avoid brain pressure/swelling).
I don’t have my pre-gamma scans here but the comparison is interesting – the tumor was one solid mass so between that and the vaccine and other treatments, we are moving in the right direction I believe. All we have is today!
Head On
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I haven’t posted for a bit. I’ve been trying to balance out my seizure meds. The second medication I was prescribed raised the levels of another medication I was taking so we had to back off the dosing of the new med. I started having some double vision – this is the same condition that led to the 911 call some time ago. So far, backing down the med has helped and I haven’t had a seizure and my vision seems ok.
I will be folding Avastin back into the mix. I will have labs today and start tomorrow with an infusion. You may recall this is not a drug that will pull down my immune system. We are just throwing whatever we can at this. The vaccine seems to be helping fatigue for sure. My current issue, however deals with walking and weakness on the left side. I’ve regressed in this area so I am going back to physical therapy for conditioning. It’s just something that has to be done. My heel striking is ok but I’ve started having a roll in my foot when walking and I’m hyper-extending my left leg when walking.
Aidan and I have been having a good time playing bball. He loves to play horse. I can jump about as high as Keegan! But, I can get out there and shoot and do pretty well. I’m just spending time with him and at night reading and talking is great. Keegan and I have some fun but at 7, Aidan can really whip a football and it’s really fun!
More to come…
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Real quick but this really illustrates how much we really need to just stay in today. My own conjecture about the increased frequency of my seizures, including brain swelling, possible growth, etc never include “stability”. However, that is what the final report says – stable. Additionally, the edema is reduced.
This is a victory of sorts! In spite of the recurrence, the working theory is that cells are dying off and that’s leading to irritation of the tumor and seizures – the gamma knife surgery is a large part of this but so is the vaccine perhaps.
As far as no change on the MRI, we don’t know the reason for the stability but DCVax has to be considered. Only time will tell because the gamma knife surgery was only several months ago as well and the full effects/results will take more time to reveal themselves.
I’m going to go on Avastin again to keep hitting it. This shouldn’t be too bad though. I’ve had it before. My biggest fight with Avastin is staying as hydrated as I need to be – you have to drink water/fluids like a fish!
That’s it – Happy Mother’s Day to the mom’s out there….
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I should hear back from my Neurosurgeon and Neuro-Oncologist today. I left a message with both. I thought more about the seizures and I think that because I’m becoming more symptomatic pretty quickly (3 focal seizures in a week), waiting until the end of May for an MRI is a little too long for my comfort level and perhaps we should do one now. This is obviously an aggressive tumor and in spite of the fact we folded in gamma knife in March and may assume this took care of growth at that time, the fact is we don’t know whether the seizures are being brought on by growth, brain swelling, damage to the motor strip from the gamma knife process (not surprising if so), etc. I think we need to do it though. With the recurrence that happened 4 months after my resection in October and “most” recurrences after the first becoming sooner and sooner in elapsed time, I want to stay totally on top of this.
I’ve been thinking over the last few days about how the so-called “economic down-turn” (which is government speak for recession) has brought some families closer together and taken us back to some core values. I know for us, it’s built on what naturally happens when fighting a brain tumor and what existed before.
Most families come together after the diagnosis and are more judicious about how, where and with whom they spend their time. I think coupling that with the economy is creating more closeness – or it creates the opportunity. More people are spending time at home – not eating out as much or shopping. I don’t think there is anyone I know who hasn’t made some type of change to their financial matters. We refinanced our home. We found a better deal on cable TV. But this tightening of the belt as it were is something that can be a positive. It’s the media that creates so much fear and hysteria about things. Yes, everyone has to be careful right now and some are in very hard times – and I pray daily about the problem but God will prevail. In the media, however, the world is going end, right? The same message was sent a few weeks ago with the swine flu – pandemic! Remember SARs? Who can forget the bird flu – the list goes on. I’m not suggesting at all that these didn’t effect anyone – they did and it was awful – just like brain tumors and other diseases they are of earthly creation. The point is the media drives fear and panic.
I find that us the most difficult issue is when I’m not feeling great – it puts a lot of pressure on Rachael and she feels the burden of the evening or weekend day upon her. Lately I’ve felt pretty good with the exception of the seizures which can put me out of condition for awhile. I think it’s hard to support each other sometimes when two people are in survival mode at certain times. We honestly struggle with this. But, on the other side of the coin (the shiny side!), I’ve been outside with my kids in our backyard playing catch with my older son. I’ve been able to play with our youngest and I’ve been spending a lot of time with Aidan at night reading books and just talking.
On a funny note, the other night Aidan needed to get out of the bath. He had his hair and shoulders so lathered up it looked like shaving cream! But nowhere else – just on his head and shoulders. Rach asked, “Aidan, why do you have so much so soap in your hair and on your shoulders?”. Aidan said “Well, the bottle over there says Head AND Shoulders so I want to make sure I do it right.” Kids can make you laugh – you just can’t do it in front of them sometimes.
Random post. Don’t forget Mother’s Day on Sunday!!
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I think the effects of the Gamma Knife surgery are really beginning to come to the surface now. You might recall from the past (review for regular readers) that my brain tumor is right on the motor strip in the right frontal lobe. Therefore, the targeted area involved the motor strip and seizures was one of the likely effects of this type of procedure. My surgeon told me that they would likely become more frequent and increase in frequency. When you think about it, I received 60Gy (Gy is pronounced “grey” which is the unit of measurement for radiation) of IMRT radiation over 5 weeks. Gamma knife was about 24Gy in one shot. It’s not difficult to understand how this might create some trauma.
I’ve had focal seizures (seizures confined to the left side of my body – typically in my left shoulder and arm) here and there but there seems to be some regularity developing in spite of increasing meds and folding in a new drug. I’ve only been on the new drug for a little while so I need to give that time but the only way to describe the feeling in my left arm is it feels like there is a seizure right under the surface that could break through at any time.
I’ve had seizures on 4/28, 5/1 and 5/4. Yesterday was laughable! We are refinancing our 1st mortgage – hey if you haven’t do it. It’s a good time! Anyway, we were getting some final paperwork notarized and sent out in a fedex store and just as everything was laid out, I felt it coming on. Perfect timing! We needed to get this stuff out but what am I supposed to do? I told Rach that I need to take a quick walk. So I walked down the strip mall where it looked nice and quiet so I could go finish my seizure and return to sign the paperwork! How lame is that?! Luckily it was a normal 5 minute deal and Rach had all the signature lines all organized for me. I was also glad that my oldest son didn’t follow out – he hasn’t seen that side of this and I’d still like to keep it that way.
I need to find out another answer here. I’ll keep tracking it with log. I haven’t had to log these since my 1st surgery really but this is when logging is important. You simply can’t remember details like when it occured, the duration, if you took medication to stop it and any other info you need to document that may be important.
Other than this issue, I’m still feeling good – plenty of energy. Something is working but I’m concerned mostly about brain swelling and want to avoid steroids which is where they would go if we can’t control it with standard anti-convulsants. I’ll get it figured out though.
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