I’m glad I have an iPhone. As I was ready to leave today for my MRI at 11am, I looked at my calendar. It was in there for next Thursday! Sheesh. I have a brain tumor – what’s your excuse?!
No big deal but thank you for all the prayers. Take 2 next week.
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Yesterday I had an MRI in the morning that was scheduled as a 30 day follow-up to my last MRI. The image to the left is the result. The yellow arrow represents the existing tumor cavity left over from my second surgery. The red arrow represents a new tumor that was found during the study. There’s no way to understand the grade of the second tumor based solely on MRI but presumably it’s also GBM and originated from the initial tumor. These tumors are infiltrative by nature and grow like weeds so you can stamp one area out but they have fingers and can pop up somewhere else. So much for my first day of being retired!
I always remember, there is nothing that can happen at this point that we can’t handle and there is always a solution that we can pursue. It’s never easy but we find our way. So once again, the wheels of medicine are often running. The first thought here is Gamma Knife and that is what we are going to do. It’s scheduled for Thursday morning. I have a meeting with my neurosurgeon tomorrow just to discuss the game plan and any deficits/risks of the process. The second tumor appears to be on the motor strip as well but in the specific area that controls my left hand. I had a seizure on Sunday morning and it was a little different than previous seizures in that my left hand was pulled into a fist and I started pumping my fist repeatedly. This correlates with the location of the new lesion. I had Gamma Knife in 3/08 so this will be #2
As I have more information I’ll post it here. Thanks for all the prayers and support.
God bless,
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Yesterday afternoon I met with my neurosurgeon. This meeting was designed to just get an opinion as to whether or not any surgical options existed to get ahead of the growth. First off I was able to confirm that the area of enhancement and the MRI is in fact tumor. Therefore I know we have to do something to address the problem. In speaking with her there is no way surgery can be performed without the result being hemiplegia. This obviously creates a huge dilemma. One of the prognosticators in terms of long-term survival is the extent of resection of the tumor. The less tumor that exists the more treatable it is in terms of chemotherapy and other treatment modalities. However, in my case I’d be dealing with a huge hit in terms of quality of life. I would be very dependent upon others, be confined to a wheelchair and likely unable to work or it least it would be difficult. Suffice it to say it’s a huge change in life. The million dollar question is how much time does this really add my life if I were to go forward with surgery versus stick with chemotherapy only. Additionally do I want my children and their last memories of me to be in a wheelchair unable to walk, play soccer, throw footballs, get around the house, etc. I really don’t know and that’s what we are discussing right now. It may happen anyway but should I roll the dice and make that happen overnight?
For those that have been following my blog, you know that I am an advocate of staying in today but when it comes to decisions like this you have to look at tomorrow and unfortunately you also have to delve into statistics to some degree. What is the success rate of chemotherapy? What is the success rate of operating on a recurrent glioblastoma in terms of longevity. All of that has to be balanced against quality-of-life. So we are praying about it, leaning on her support network and thinking all of this through. Through prayer, we are certainly hoping that we are not confronted with this situation and that in the first 30 days of chemotherapy I respond to it. The near-term strategy is to start a new chemotherapy which could be carboplatin or a new drug that I have not researched yet called VP 16. I need to speak to my neuro-oncologist more about this. In addition, I have three doses a DC VAX left. I will likely start using those. I’m also continuing to use Valcyte. After I’ve been on this cocktail of chemotherapy and other drugs for 30 days, I will have an MRI and we will see what the tumor looks like. If it’s shrinking that is great news obviously. Even if it’s status quo that’s a good result. If it continues to go in the wrong direction then we start getting down to the difficult decision. I will likely continue to chemotherapy for an additional 30 days after that then we will take another MRI. If I continue to respond to the chemotherapy and I will just continue that regimen, thus avoiding the decision regarding surgery. If it’s moving in the wrong direction then I have a big decision. We’ll cross that bridge if we get there.
In the end, it is about living in today but we have to be thoughtful about tomorrow and make sure that we are mentally and spiritually prepared for such decisions. Sometimes we can’t even imagine how we ended up in this position. It’s surreal. But we are and we have no choice but to accept or circumstances, trust in God and put 1 foot in front of the other. This is not easy at all. Again, I would be lying through my teeth if I told you this is in our worst nightmare. But we try to take it day by day, enjoy our kids, deal with the issues and live our lives. As we formulate more of our plans I will post as I can. I’m using some great dictation software now so I can basically just speak in the text is just laid out on the screen for me with very little corrections to make.
I humbly ask for prayer at this time. This is probably one of the most difficult periods for us. Yes, we’ve been through a lot but if it weren’t for the endurance we have developed as we’ve gone through this trial this would be like a ton of bricks falling on us but we have persevered and done the best we can and we will continue to do so.
Thanks again for all the support and all the prayers. I also appreciate all the e-mails I receive from so many people. They are so encouraging and mean a lot.
Here is my MRI report. What’s important to note is under impression. The observation of increasing enhancement that likely represents neoplasm is what I needed to know. Neoplasm in layman’s terms means tumor.
More soon…
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I’m slowly pulling out of this and have some time to ellaborate on my fun with the flu. This flu is hard for anyone let alone those with a suppressed immune issue.
First off, the strain of influenza I had been dealing with is called Haemophilus influenzae. This is not to be confused with H1N1. Most strains of H. influenzae are opportunistic pathogens – that is, they usually live in people without causing disease, but cause problems only when other factors (such as a viral infection or reduced immune function) create an opportunity. As brain tumor survivors, we have inherently suppressed immune systems. As I mentioned, my white blood cell count was 0.9 going in to the hospital and my absolute neutrophil count (ANC) was at 400. Normal ANC is above 1,500 cells per microliter. An ANC less than 500 cells/µL is defined as neutropenia and significantly increases the risk of infection. Neutropenia is the condition of a low ANC, and the most common condition where an ANC would be measured is in the setting of chemotherapy for cancer. Neutropenia increases the risk of infection.
So, I was a prime candidate which is why it’s important to have regular CBCs, which I do. When the flu started my counts took a dive fairly quickly. I have been on Avastin every other week The CBCs confirmed this. The CBC on Thusday showed my ANC is at 1,200 now so I’m getting there but the week and a half of being down like this has taken its toll.
The MRI that we conducted in the hospital showed that everything is stable. The one interesting detail is that there was an observation showing an infarct resulting from subacute ischemia. Brain ischemia, also known as cerebral ischemia, is a condition in which there is insufficient blood flow to the brain to meet metabolic demand. This leads to poor oxygen supply and thus to the death of brain tissue or cerebral infarction / ischemic stroke. It is a sub-type of stroke. This is viewed as a positive in my case because it shows that the blood supply to the area of the tumor is being cut off. I’d venture to guess perfusion test would reveal this. I am weaker on the left side and I have more issues with equalibrium. I can’t be sure if this is a result of just having the flu, an episode of radiation recall, or ischemia. Regardless, I can’t do anything more than we are doing/have done.
Being in hospitals is not too fun obviously. I don’t know how many bags of antibiotics were pumped through my body. I ran a high body temp for awhile and that can make one more vulnerable to seizures (and ischemic attacks). I had one seizure in the hospital. Ativan handled it. To add a bit more detail for those interested, the main symptoms of ischemia involve impairments in vision, body movement, and speaking. The primary symptoms of brain ischemia that apply to me include problems with coordination and weakness in the body. What is amazing is that all of this was a chain reaction that began with the flu. My immune system is compromised and the dominos fall.
That’s it for now. GLAD to be out of the hospital. A prayer out to Michael who will be going in for a second craniotomy in the next week or so. Please pray for him
Cheers
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Just a quick update. I am continuing with my bi-weekly avastin infusions and they are going fine. I will have an MRI coming up in the middle of October – yet to be scheduled. Walking into the infusion center every two weeks is always a bit sad on several fronts. I typically pray for many people in there. I’m blessed to be in the position that I am with a GBM. So many people in there are just at the end of the road. It’s their time but I take comfort in knowing that this is God’s plan for them. Many of them smile and have joy in their eyes, still. Others are just very tired. I pray for all of them though. The team there is very good – they really know how to take care of their patients.
I am noticing over the past month or so that my memory is slipping a bit. It’s all short-term memory. I use my iPhone constantly. Examples – I’ll set a meeting for a Thursday and someone will tell me they can make it on Thursday (this will be on a Wednesday for sake of discussion). I’ll reply “oh, the meeting I set up is on Friday, not tomorrow?”. With confusion showing on their face, they’ll say no, it was Thursday. I’ll say ok, you’re probably right and I’ll double check my calendar. Or, I’ll ask someone on Tuesday who’s playing on Monday Night Football and of course if was “last night” because I’m asking on Tuesday! Dumb stuff! People say that they themselves do that all the time but I know radiation is catching up to me. My neuro-oncologist has noticed – and I’ve missed some appointments with a therapist I use for support as a result.
The positive? This doesn’t affect my professional life. I am laser-focused at work. I may let a few meeting times slip, but I have audible alarms and other means to stay on top of everything. I’ve also found some great brain teaser type of game for the eye phone that build up cognitive endurance. Between that and my professional life, I’m getting along just fine. It’s something that is evident to me now is all. It is what it is and I am taking steps to work on it. Just like physical therapy that I have every week, I have to work on this, too. Sometimes it feels a bit overwhelming – so much to do! However, this thinking goes back to living in today and, sometimes, just in the moment. I can choose not to fill myself with everything at once. Right now, I’m just posting this to my blog, period. That’s it. And I’m enjoying it!
Next week is an off week for treatment. I’m still having seizures – had one over the weekend last weekend but they are very minor. I’ve had so many minor seizures that I can walk through those just fine. I will say that the first few seizures after the large seizure back 4-6 weeks ago concerned me in the beginning. I wasn’t sure if they would evolve into something more significant but they haven’t.
Kids are great and Rachael is doing well.
I had to put this pic in here. Rachael took this of Keegan at a park and he looked so happy! She told me that 5 seconds before this a little girl was looking through the same window and he bonked her on the head so he could get in there. Bully. He apologized after the picture.
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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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In a word, WOW. If you’ve been reading my blog for some time, you know that we’ve had our share of not so positve news over the past few years. We’ve learned to live each day (and are still learning) in the face of this disease. However, this scan shows that the power of prayer, advances in experimental treatments and the tenacity of researchers, doctors and others in the medical field can yield results.
I will cut to the chase first. Here is a shot of what was on the monitor in clinic when we talked.
From left to right, we have the March 30th scan (2 weeks post Gamma Knife), the May 7th scan and then Monday’s scan, July 20th. Look at all of the enhancement in the first and second scans. The second, however, does show some evidence that some cells are dying in the center of the tumor. Monday’s scan, however, is amazing. No edema, no mass effect, enhancement has significantly decreased and the profusion portion of the test which I will get to is equally telling. Needless to say, I’m VERY pleased with this result. We have not had a report showing a decrease at all since this started – only stable or further enhancement. What we have done here is hammered this tumor with an army. There is nothing more satisfying in this setting than to see this tumor get pummeled!
Now for some additional details:
Again, March, May then Monday’s scan. What a blessing. This tumor, a grade 4 GBM is dying off at this point in time. That is the situation TODAY – but see my previous post. Let’s stay grounded here.
Finally – a test that is very telling is called a Profusion Test. In basic terms, it shows the blood flow in and out of a tumor. It looks like a heat map. High blood flow is shown by yellow/orange and red colors – the closer to red the higher the blood flow. The more blood flow a tumor receives, the more it can grow. Tumors depend on high blood flow. If the blood flow is low or cut off, this can help kill a tumor. Many chemotherapies for primary brain tumors focus on cutting off the blood supply. The vaccine as you’ve attacks the malignant cells and kills them.
Check out the profusion image:
The circle on the left side surrounds my GBM. Take note of the color and the legend on the left. The profusion test shows DARK blue in the area of the tumor. Another sign that my treatment is effective.
Finally, I decided this time I would just put the report up here so a) readers could see what an MRI report looks like if you haven’t seen one before and b) it’s easier to lay it out rather than repeat everything. I just blocked out personal info. What you should pay attention to is the “Findings” and particularly the “IMPRESSION” portion of the report.
It may be a little hard to read so my apoligies. In summary this is great. There is also no evidence of any grade 4 cells moving into any other areas of my brain. I can’t pray or ask for anything better than this. And, as always, I’m prepared for whatever comes my way. It’s about today and I do the best I can to stay here. I slip up – but TODAY is a good day and I have to thank God for this gift of healing.
I will be taking 2 weeks off from Avastin. I have been taking Avastin alone along with Thalamid. I failed Avastin in the past – it just kept it stable but I had a recurrence in February that led to the vaccine and gamma knife in March. I also failed Avastin + CPT-11. Again, stability but no real progress. I then started vaccine therapy (DCVax). I believe these results are / can be attributed to DCVax. I am also going to back off of Thalamid. It makes me very tired and “loopy”. It’s a slight risk but the next scan will tells us whether it’s been any factor at all in my treatment. At the next scan we will have more info. I had another series of vaccine shots yesterday so I will keep moving on.
I want to thank everyone who is praying. This blog is my way of giving back and I can’t thank everyone enough for your continued prayers. I’ve said that before and I hope everyone realizes that by praying for each other and creating a community of survivors, caregivers and friends who have this in common, we can find some sense of peace in sharing our stories.
I continue to urge you to use the comments section of posts to relate your experiences for everyone to see/read. It’s helpful for everyone.
More to come….
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I’ve been a bit out of touch but for good reason. I’ve been extremely busy, both for pleasure and tending to medical responsibilities.
It was a very busy week last week. On Wednesday, I had lab work to complete in prep for Avastin on Thursday but have had vision issues due to meds. I had a co-worker take me. I have to lower a dose of one med I believe. Today isn’t so bad. I’ll be discussing that today and likely lower this dose starting tonight. I continued with physical therapy in the afternoon. My left side (primarily my left leg) is weak so I’m continuing to work on this. I was far too tired to work out so I opted to receive functional electrical stiumaltion which sends electrical charges into the muscle in my lower leg and down into the arch of foot – an area I cannot move at this point.
Also on Wedneday, Aidan and I had a 7pm event at the church. Aidan spent the previous week called Breakaway at the church. Waterslides, arts and crafts, etc. This was an opportunity for the kids to show parents what they did for the week. It was great!
On Thursday, I had an Avastin infusion in the afternoon preceeded by an appointment with my oncologist. I had another appointment after that at 4pm. Talk about being whipped! It doesn’t sound like much to most people but those of you who deal with living life with a GBM can relate. I’m still working and managing all of this plus of course trying to just lead a normal life but it’s at times. By the end of most days, I’m pretty tired.
I hope all of you in the States had a great holiday. We had a great time although I still struggle with seizures from time to time. I had several this weekend but hadn’t had any for a week or so which is still much better than the every other day roadblocks I ran into in the past. I’m still on the upward climb to the 6 month peak of the post-gamma knife bell curve related to seizure activity. It is not unexpected for the seizure activity to increase in frequency and severity so keeping them at bay the way we have is a victory in my book.
So what is next?
However, as I’ve mentioned so many times – the key for me is to stay in today as much as possible. It’s not always easy but is something that I strive to do. It’s all we have and is the only way to be present. If I live in yesterday or tomorrow I’m no use to myself or anyone else. Sure, I have be strategic with regard to my direction but I don’t have to stay there. Likewise, the past is the past. I can’t dwell on any past decisions. The outcome of those decisions are done and they are exactly as they should’ve been. I feel comfort in knowing this. God knows where this is going and He is in control, not me – the doctors – no one. This fact alone helps me each and every day. I pray for His will for me and my family and although I may not understand it, I know that there is a higher purpose here. Perhaps it is simply my testimony and it will help others.
I have told this story before but it’s worth repeating. When I went through the “why me / why us” stage in the beginning of my diagnosis, there was a day that changed everything for me. I was in the cancer center one day waiting for the elevator. There was a little boy standing next to me with his mother waiting too. The boy was about the same age as my son, Aidan. I looked down at him and smiled – he smiled back with a big smile – joy in his eyes. The absence of eye brows, eye lashes and hair made it clear that he had undergone significant chemotherapy and was battling cancer at the age of 5 or 6. But how could a boy this age still be happy? And how could life shuffle the deck and deal this card to him? He hasn’t experienced anything in his life yet. I thought to myself, “how many seasons this boy has in front of him that he may never live to see. This is fair. Why him?” Well, needless to say, when applying this to my own, selfish thoughts of “why me” it changed my perspective. “Why not me?” I thought. What makes me immune to this? Nothing. Why are entire families taken out in car accidents? Why do bad things happen to good people? It’s hard to understand but there is a higher purpose. It’s hard to wrap your head around and it still is for me, however, it’s easier for me to just turn it all over to God – He is in control, not me. And, I do as much as I can to keep myself in TODAY.
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Has anyone had this summer flu/cold that is going around? I’m sure a lot hands went up. It’s bad! Especially if your white cell count is consistently low. I was supposed to have an avastin infusion last Thursday but I took most of that day off and all of Friday and slept. There isn’t much else you can do. Today is the first day I have felt better with some good energy. I’m going to see if I can set that up this week.
Avastin, because it cuts off the blood supply to the tumor, can not only work on slowing the tumor’s growth but can also help with brain swelling. As I’ve posted, I’ve had some issues with focal seizures on the left side since my gamma knife surgery so this can help lessen these in theory.
I am still juggling meds to control seizures. I had a few late last week and one in the middle of the night that woke me – that was new. It was like someone shook me! It was like all the others though. So we added back in a med that gave me a bit of vision issues last time but I’m taking it every other day and at a lower dose. I started this on Friday.
My son Aidan came home the other day and said he had a Father’s Day present for me and asked “Can I give this to you now and then we can do it again on Father’s Day”? Sure. First he made this great card – a picture of him in an over-sized suit jacket and a tie with a caption that read “this is what my dad wears to work” and then a note that read “Thanks Dad for making the money for our family to live here. Your the best dad. I love you”. SO FUNNY!! The picture is priceless. Then, the present is a river rock that probably weighs about 5 pounds – no kidding! It’s painted brown and with black paint he painted “I love you Dad”. Now, I never in my professional career found a reason to use paper weights. It’s not like people are working on rooftops or in the middle of a sidewalk. What are they supposed to do? But, I have a government issued, Aidan-reconditioned paper weight in case a wind storm hits our high-rise and I don’t have windows anymore!
This week hopefully I can have my Avastin infusion. I’ll have an MRI in another 5-6 weeks I believe – don’t pay much attention anymore. Just try to stay in today and live life.
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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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