Treatment Update

Today marks the halfway point of my treatment. Things have gone well so far and much faster than I expected. There has been some minor things here and there. Last week I started to have some dull headaches, but so far Tylenol is keeping them at bay. Hopefully, steroids won't be needed to keep the brain inflammation in check. Also, I’m starting to develop some sore/sensitive spots on my head, but they are okay right now. Thankfully, fatigue has not been too much of a problem and hopefully won’t be as treatment progresses.

Novalis TX

Here is the machine being used to treat my tumor. It is called the Novalis TX and is also made by the same company, Varian, who also makes the True Beam system.

Treatment Started

I began my treatment this past Tuesday and just completed my fourth session today. Just 24 more sessions to go. Feel okay so far and the drive to and from UCLA has been bearable so far.

I am receiving a total of 180 centigrade of radiation per session at the isocore (i.e., tumor). Since there are nine beams/entry points, each beam will deliver about 20 centigrade of radiation. The 180 centigrade is considered to be in the normal range for radiation therapy treatment.

Finally found a breakfast idea I might be able to live with. As some of you know, I’ve been trying to switch over to a more healthier diet as studies have shown a connection between diet and tumors/cancers. It’s been a slow change for me and I’m starting out with breakfast first. Can’t believe I haven’t had processed sugars in over 3 weeks. Anyway, if anyone would like to try this, here’s the recipe for the above oat meal breakfast bowl I conjured up from various recipes I’ve found.
Serves 1:
¼ cup of rolled oats
½ cup of water
¼ cup of soy milk (optional)
Raw local honey (thanks Michelle!)
4 Strawberries
Blueberries
Uncle Sam’s cereal (original)
In a small pot, mix the oats and water over a low to medium heat until the desired consistency is met. Please stir occasionally. Then mix in the milk. I find that it gives the oat meal a richer taste and better consistency.
Once desired consistency is met, scoop into bowl and drizzle with honey, sprinkle a bit of the Uncle Sam’s cereal for a crunchy texture, and top off with fruit.

Here’s my mask that I will wear once treatment starts. It was made just today. It's fairly comfortable, although restricting of course. My treatment plan should be finalized within the next week or two.

Spoke with the radiation-oncology office today and we were able to finally schedule the necessary brain MRI for tomorrow evening. So now both scans for the brain mapping are scheduled and if everything goes according to plan, my treatment should begin the week of 11/28.

Quick Update

So I still haven’t started radiation therapy yet. The CT simulation has been authorized, however, UCLA is still working on obtaining authorization for the brain MRI. The brain MRI is needed in the brain mapping portion of the treatment. The issue is that additional documents are needed beyond the norm because I just recently had an MRI on 10/17 so my insurance needs additional information on why another one is needed so soon. In speaking with the UCLA radiation oncology office, I believe everything should be cleared up by this week. The good news is that my CT simulation is set for this coming Thursday (11/17). It would be great if the brain MRI is authorized and can be scheduled for this date as well.

So if both scans can be done by the end of this coming week, the most likely start date for my treatment would be November 28. It normally takes 7 to 10 days for the treatment to be finalized by the radiation-oncologist and neurosurgeon after the completion of the brain mapping. Based on this start date, my treatment should end the first week of January 2012.

A mini crisis also came up this past week. I received a letter from UCLA informing me that their contract with my insurance will be terminating January 1, 2012. It also further stated that both parties are currently negotiated a new contract, but no agreement has been reached as of yet and it is uncertain whether one will. This revelation certainly brought some cause for concern because my treatment would run so close to the date. I wasn’t sure how it would possibly affect my treatment and whether it would be necessary to go elsewhere for treatment. I sent an email to Dr. Selch and the very next day received a call from his office. The person whom I spoke with was great. She explained that in the circumstance that a new agreement cannot be reached between UCLA and Blue Shield, that it should not be a problem to continue receiving care at UCLA. There is a Blue Shield program called Continuity of Care Services that would allow patients to continue to receive care from their provider under in-network terms for a specified amount of time in the event such as what I am facing now. The radiation oncology office said that if needed, they would go ahead and fill out the application for me and that in their experience, it should not be a problem in getting approval from Blue Shield based on my specific circumstances and the criteria used for approval. In speaking with a Blue Shield nurse who I have been in contact with, she also stated the same thing. Hearing this definitely made me feel better.

This past week I also met again with Dr. O’Bryan. The good news is that the echocardiogram shows everything is okay with my heart. It is structurally sound and functioning normally. Also, based on the transmissions I sent, everything looked fine as well, therefore I no longer have to wear the monitor. Dr. O’Bryan feels that my off-centeredness may be a side effect of the Keppra I am taking due to the fact that I am getting these random episodes even when I am sitting as well. However, at this point, he recommended that I intake about 32 oz of electrolytes per day for the next couple of weeks just to see if it helps. If it doesn’t, then he may prescribed me a medication to increase my blood pressure, however, it’s something he is hesitant to do and will consider it when the time comes.

Regarding the Keppra, I feel that it may have something to do with my bouts now. Maybe it didn’t when the dizziness came back again at the end of August, but it may now. This past Monday, Dr. Lai increased the daily dosage from 2000 mg to 2500 mg. He felt it necessary because about 1.5 weeks ago, I had a couple episodes accompanied by some slight disorientation and one bout accompanied by very slight weakness in my legs although just literally for a fraction of a second. This was cause for concern considering I’ve never had an episode with disorientation even before I started Keppra back in June and I haven’t had weakness since I first started having mini-partial seizures. The good news is that I only had these two sensations that one day 1.5 weeks ago and haven’t had them since. However, I do feel a bit more off-centered since the increase in dosage and I do seem to be having more bouts while seated and the bouts seem to be lasting longer or are prolonged whereas before the increase in dosage, they would be relatively brief.

Well, I am hoping that the brain MRI will be resolved this week and that I can get both the MRI and CT scans done by Thursday in order for my treatment plan to be finalized.

It’s been a while since I last posted. My treatment schedule still hasn’t been finalized yet. The radiation oncology office had been waiting to get insurance authorization on the treatment itself (intensity-modulated radiation therapy) and the accompanying MRI scan and CT scan/simulation. The latter two are necessary and are part of the initial steps in the planning of the radiation therapy treatment. These two scans, in particular the CT sim, are part of the brain mapping process that will map out my brain three-dimentionally. This will enable the radiation dosage to be applied more precisely and minimize irradiating normal brain tissue. During the CT scan/simulation is when I should have the mask made as well. This mask will be used for all subsequent treatment sessions to keep my head in place.

According to the office, it had been the latter two that had been holding things up a bit, but everything has been authorized. Therefore, I should be hearing something back this coming week regarding the the scheduling of these two things. Again, it’s necessary to have these two things done before my treatment schedule can be finalized as I understand it.

This past week, I did meet with Dr. Pouratian of UCLA neurosurgery. He is a neurosurgeon that will be working with Dr. Selch in formulating my treatment plan. As he explained it, protocol is such that all patients with a brain tumor undergoing radiation treatment requires a neurosurgeon to be part of the team in preparing for the procedure. This is so in order for the neurosurgeon to specify areas to avoid to minimize mental deficits. One bit of good news is that Dr. Pouratian did mention that my tumor seems well defined. The discrete definition of the tumor will help in avoiding the radiation of normal brain tissue so I am glad to hear this.

Regarding my bouts of feeling off-centered, they are still present. Although for the most part, the dizziness and lightheadedness have gotten much better when I wake up in the mornings, the random bouts I get throughout the day seems to have increased. Still not sure what may be the cause, i.e., whether it’s low blood pressure, low blood sugar, or if I am having mini-partial seizures. I met with Dr O’Bryan, a cardiologist, a couple of weeks ago at the behest of my primary care physician to see if it might be a cardiovascular issue. He has me wearing a heart monitor of which I’ll have to wear for another couple more weeks. Whenever I have an episode, I am to record it and the unit will measure my heart and cardiac function. I also had an echocardiogram as well last week and will be meeting again with Dr. O’Bryan this Tuesday to follow-up on the results and on the recorded episodes so far. Hoping to get some answers.

10/17 MRI and Follow-Up Meeting

So today’s MRI indicates that my tumor is stable. This basically means little to no growth. I am really relieved, however, in meeting with Dr. Lai, I have decided to start with radiation therapy as soon as possible. There’s still a very long road ahead. The surgery I had only removed what tumor tissue that could be removed, but did not of course provide any sort of treatment to prevent the remaining tumor tissue from future growth. Although today’s MRI showed little to no growth, it does not necessarily preclude the tumor from growth in the future. Most likely, it will begin to show signs of growth at some point and treatment is inevitable. It’s either treatment now, or treatment later so I figure doing now is better and I can just try to move forward with my life.

After meeting with Dr. Lai, I went to over to the radiaton-oncology office to let them know of my decision. I will be hearing from them sometime soon regarding the scheduling of my treatment, which should most likely start in the next week or two. According to Dr. Lai, and the radiation-oncology nurse, I should be able to drive myself to and from UCLA which will make it possible for me to receive treatment up there which I am thankful for. I had been concerned whether fatigue may prevent me from driving myself, but it appears that it won’t be an issue. I’ve contacted other people who’ve gone through radiation therapy and they’ve been okay with driving to and from their treatments as well.

So at this point, radiation therapy should consist of 28 sessions over a 5 to 6 week period. Each session should last roughly 30 minutes although most of the time should be primarily to set up everything. The actual radiating should only be 2 to 4 minutes in duration. The very first session as I understand it should be a bit longer as a custom molded mask will need to be made for me. As I mentioned, the radiation therapy will be conducted using the TrueBeam linear accelerator. Overall, I feel okay about this decision although there is always the unknown of course.

Not all the news was good though. In meeting with Dr. Lai, I was able to talk more depth with him about my recent bouts of dizziness and the feeling of off-centeredness. He’s still concerned that I may be having mini-partial seizures. I told him about my visit with my PCP last week who believes these sensations may be due to hypotension (low blood pressure). However, Dr. Lai thinks that it could be both hypotention and the tumor causing these issues and wants to be on the safe side and rule out anything that’s possible to be ruled out. So starting tomorrow, my Keppra dosage will be increased from 1,500 mg up to 2,000 mg to see if it makes a difference. I hope it leads to some answers.

Upcoming MRI on 10/17

Well, I have my next MRI this coming Monday and then a follow-up with Dr. Lai afterwards. Am a bit anxious about what the MRI will reveal. I believe this feeling of anxiousness before an MRI scan and its finding is called “scanxiety.”

This MRI should dictate the growth rate and characteristic of the type of tumor that I have. I am hoping for the best in that it will show no growth of the remaining tumor. According to Dr. Lai, there should be little to no growth as it is a grade 2 oligoastrocytoma. If there is significant growth then it will mean that the tumor will have taken a turn for the worse. Therefore, a more aggressive treatment would be needed such as radiation surgery, which is similar to radiation therapy, but at a much higher dosage. Also, I may need another surgery depending on the location and amount of growth.

At this point though, assuming that the results are positive, I am leaning towards radiation therapy. Again, it seems that the effectiveness of each treatment are about equal and it’s just coming down to what I think I can live with after assessing the positives and negatives of each. I probably won’t make the ultimate final decision until I’m in the office with Dr. Lai on Monday.

True Beam Linear Accelerator

If I choose to go with radiation therapy up at UCLA, the machine that would be utilized would be the TrueBeam system. It’s supposedly the latest machine available and was just made commercially available last year. Here is a link to UCLA radiation oncology page:
http://radonc.ucla.edu/body.cfm?id=297

So I haven’t had any dizziness since the second surgery, but been having dizzy spells again the past few days. Primarily in the mornings when I wake up and when I am lying down. On a couple of occasions, it’s been accompanied my an intense ringing in my right ear.
Dr. Liau believes that it might be a low blood pressure issue or possibly hydration issue. However Dr. Lai is concerned that they might be mini-partial seizures. He’s recommending that I take a 500mg Keppra pill in the morning and a 1,000mg Keppra pill in the evening as a precaution. Initially Dr. Liau wanted to wait to see if any new symptoms occur before possibly calling what I’ve been experiencing mini-partial seizures, but concurred with Dr. Lai’s recommendation. I’m a bit disappointed and hoping that I am not having mini-partial seizures again and that whatever is causing this will soon pass. Also hoping the body rash does not come back due to the increase in dosage.

Treatment Options

So I am deciding between radiation therapy and chemotherapy. Here’s a somewhat generalized summary of each treatment:

Radiation Therapy:
The recommended radiation therapy would consist of 28 sessions so about 5.5 to 6 weeks as I would go in everyday, Monday through Friday. Each session would last about 15 to 20 minutes. The type of radiation therapy proposed is called stereotatic radiotherapy and would be done up at UCLA because of the special equipment they have that most other institution does not have. The equipment allows for a very precise placement of the radiation beams.

The treatment would consist of initially having a customize mask made. Once this mask is made, my head would be clamped in place. Three beams of very low dosage would then be administered with the help of 3D imaging to assist the radiation therapist and further increase accuracy. The beams can be shaped to the shape of the tumor to minimize healthy tissue damage. However, there will be somewhat of an overlap to ensure that unseen tumor cells are radiated as well. So inherently, this can lead to long-term mental deficits (e.g., short-term memory loss, lowered cognition, etc…) which is a drawback to this procedure. In speaking with Dr. Selch, the UCLA radiation-oncologist, he does not believe the risk of potential mental deficits to be high because of the location of the remaining tumor, although of course he also said there is no guarantee. Again, possible mental deficits are just the inherent consequences associated with radiation. Short-term side effects can include hair loss for the areas where the beams enter, skin irritation, fatigue, loss of short-term memory. As these are short-term effects, they should all go away in time, however, the hair loss may become permanent. Surprisingly, according to Dr. Selch, he said that although I may feel fatigue, that I should be able to drive after each treatment option.

Chemotherapy
As for chemotherapy, as I mentioned in an earlier post, the neuro-oncologist is recommending a high dose treatment. So it would consist of taking temodar orally for a 5 day period for the first week of every month for the next one to two years. Short-term side effects include nausea (controllable with anti-nausea drug), fatigue and constipation, hair loss (very minimal) and blood count lowering which can cause constant low grade fever. The long terms effects are minimal, with a very small chance of developing a leukemia although the advantage of chemo is that it does not have the long term delayed neurocognitive effects of radiation. Unfortunately, there is no way of monitoring or predicting whether someone would develop leukemia. However, the chances are relatively small. In my own research, I’ve come across figures of 1 to 2%. According to Dr. Lai, of the couple thousand that’s been treated at UCLA, only one patient has developed leukemia.

There’s also the option to do a low dose treatment, which would require taking Temodar everyday for a 5 to 6 month period. However, there doesn’t seem to be an advantage over the high dose. Also, Dr. Lai has stated that the low dose option could end up resulting in more short and delayed side effects as it could result in actually ingesting a higher overall dosage of Temodar in the long run.
From people who is or did chemo using Temodar and according to Dr. Lai, usually the 10-12 days out of every month people don’t feel so great, but feel relatively okay the rest of the month. However, as with everything, it really just depends on the person. Some people can take the treatment really well with hardly any issues, while others need to be taken off because  they cannot adjust to it.

I initially thought of going with chemotherapy. There are certain markers that are looked for to determine how effective chemo will be. Unfortunately, the characteristic of my tumor does not exhibit markers that would seem to make it chemosensitive. However, Dr. Lai did say that while having certain markers do help, it does not necessary mean that chemo won’t be effective. Anyway, there is no cure for brain tumors and only treatments. Both radiation and chemo does not cure really tumors, but primarily prevents or prolongs tumor recurrence.

I’ll post more later, but any advice would be appreciated. I am having a difficult time deciding between the two as one is not exponentially better than the other and both have their drawbacks. My number one concern is quality of life more so than longevity.

Some bit of Good News

According to Dr. Liau, my neuro-surgeon, I should be able to drive again by this time next week! The condition is that I don’t have any auras or seizures from now until then. Since the surgery, I haven’t had any, even with the lower dosage of keppra, my anti-seizure medication. Some background. When I initially took it, Dr. Wagle started me on 500 mg. After my craniotomy, it with increased to 1000 mg, which caused me to have severe body rash. So it was lowered back to 500 mg.
Since the surgery, aside from recovery from the procedure itself, I haven’t had any issues with dizziness like I did before. Before the surgery, I was having simple partial seizures (dizziness and weakness in legs). Even when on keppra, I was still having dizzy spells, which I thought might have been from the keppra as it is a common side effect along with drowsiness. Anyway, since I have been dizzy free post-craniotomy, even when on the 1000 mg keppra, the dizziness prior might have been from the tumor and not the keppra. When Dr. Liau recommended going back down to 500 mg, a concern was that I might start getting dizzy spells again and have simple partial seizures and auras. Again however, so far so good and it’s been about 10 days now since going back to the lower dosage.
Hoping it stays this way. Being able to drive will make such a difference as it will lessen the burden on my family and will be another step in the recovery process and in returning some semblance of normalcy. It will mean so much and do wonders emotionally, mentally, psychologically.

Possible Treatment

Yesterday I met with Dr. Albert Lai of the UCLA Neuro-oncology team. He went over a couple of treatment options for me, radiation therapy and chemotherapy. He would like me to start one of the treatment options in a couple of months time when I’ve recovered some more. Dr. Lai stated that if I had had a complete resection of the tumor that the course of action would be to just observe via periodic MRI scans. However, because I still have about 25% of the tumor left, he recommends some course of action to further minimize future tumor regrowth.

Radiation therapy would consist of going in every business day for a five week period. Possible side effects are subtle brain damage such as slight loss of memory, concentration, etc. Chemotherapy would consist of taking temodar orally everyday for the first week of every month for a period of either one to two years. Side effects could include fatigue, nausea, and stomach issues. I have a meeting with a radiation oncologist in a couple of weeks to get a better understanding of what radiation therapy would entail and the advantages and disadvantages compared to chemotherapy.

Staples removed 2.5 weeks later

Open Biopsy Pathology Report

Good news. Just spoke with Dr. Liau and everything looks good. She was able to remove about 75% of the tumor. It is a very low grade oglioastrocytoma. The proliferation index for a low grade tumor is 5%. Mine is less than 1%. MRI scan in three months to determine whether any treatment needed. Good news.

Craniotomy Photos

Without wrapping

Post-Op

Pre-Op getting prepped

My Preliminary Schedule

Tomorrow night, my mom, my sister, and I will be heading up to UCLA and will stay in Westwood. My dad and brother will come up early Thursday morning. At this point, the specific time of my surgery has not been set yet. I have to call in tomorrow between 2-4 PM to find out my check-in time.

For Thursday, according to Dr. Liau, my surgery should last somewhere between 5 to 7 hours. My poor family. Luckily, Maddie’s Room looks comfortable and also the cafeteria is literally right next door. Hopefully, the wait will not be too bad for them. After the surgery, Dr. Liau will come and speak with my family. If all goes well, I should be discharged by Sunday afternoon.

Maddie's Room (waiting room)

Pre-Op Testing Done

Was up at UCLA again today for an MRI scan. The funny thing is that I actually kinda fell asleep during the MRI scan. Don’t know if this is a good or bad thing. However, this was my last bit of testing before my surgery next Thursday.

Since I had some time before my CD copy would be ready, I went over to check out the Ronald Reagan UCLA Medical Center to get some familiarity with it. I have to say that the ground level halls are massive. Anyway, I’m glad I went. Was able to find the waiting room (aka. “Maddie’s Room”) and map out where to go come Thursday. Will probably go again Wednesday night with my folks and my sister to get them familiarized with the hospital as well.

As of now, next Tuesday (8/2) will be my last day at work before I go on medical leave. I spoke with my workplace in terms of what paperwork needed to fill out and some other logistical items that I will need to do before my leave starts. So for these next few days at work, I’ll be trying to wrap up a couple of projects, clean my office and box up my items (for my company’s move in September), and enjoy some time with family and friends. Again, why do I feel like these are my last days before going to prison…ha

Scheduled Open Biopsy

After meeting again with Dr. Lai along with Dr. Piccioni on Monday and Dr. Liau on Tuesday, I have decided to go with the open biopsy procedure. It is scheduled for August 4 and will be performed by Dr. Liau at Ronald Reagan UCLA Medical Center.

I met with Dr. Lai and Dr. Piccioni after my MRI scan. Although my MRI scan shows little to no change of the lesion, Dr. Lai still believes that the best course of action right would be resection of the lesion. It would provide the most definitive path in determining what the lesion might be and what treatment if any, would be required. Dr. Liau shares the same opinion as do the other members of the tumor board she consulted with. Dr. Liau added that removing as much as possible now would greatly reduce the chance of complications in the future. She also added that there might be a good chance that removal of the lesion would also reduce or eliminate altogether the possibility of seizures and therefore I would no longer need to take Keppra.

All indications based on the MRI scan points to the lesion as most likely a low-grade tumor of some sort (most likely a glioma). Dr. Liau explained that any abnormalities in the brain can be attributed to either gliosis (scar tissue), cortical dysplasia (extra clump of brain tissue), or a tumor. However, based on the MRI scans, the two former have been ruled out because the lesion does not match their characteristics. If it were the two former, a likely path would be a wait and see approach to see if they result in any physical symptoms such as seizures. As it seems likely to be a low grade tumor, the best course of action I believe is to take it out because 1) I can stop wondering what the lesion is, 2) it will provide a more definitive answer and course of action, and 3) it would likely decrease any possible future complications should the lesion become aggressive (which can happen). There can be complications and a small chance the procedure may result in irreparable mental deficits. I only hope I am making the right decision.

So there are a few things for me to do in the next coming weeks (it’s coming up so soon!). Dr. Liau would still like for me to get the DOPA PET scan done along with some brain mapping to help with the biopsy. I may also need to possibly do an autologous blood donation (self donation) as well. Additionally, there is some paperwork to prepare and I’ll need to prepare the FMLA and SDI applications as well. So much to think about and do on top of my work responsibilities…

Tumor Board Update

This past Wednesday, Dr. Wagle presented my case to the tumor board and was able to consult with Dr. Linda Liau. According to Dr. Wagle, Dr. Liau felt that a larger biopsy/resection would be safe and possible. However, I haven’t had a chance yet to meet with Dr. Liau and waiting to hear from her office to schedule an appointment. I hope we can schedule one for this coming week or early next week. I also still am waiting for my MRI and PET scan appointments as well.

Although I haven’t had a chance to speak with Dr. Liau yet, it does seem very likely that I will have to undergo the open biopsy after all. However, I’m glad that Dr. Liau will be the neurosurgeon overseeing my well-being.

Quick Update

My case wasn’t presented to the tumor board this week because the doctors whom Dr. Wagle would like get opinions from were not there. The two neurosurgeons are Dr. Linda Liau and Dr. Bob Shafa. I’ve read really good things about both, especially Dr. Liau. They will be there next week, so my case will be presented then. I am hopeful and encouraged though moving forward that my case will be overseen by such esteemed doctors.

Still waiting on the MRI scan and PET scan. The latter can take sometime as it normally requires prior approval from the insurance company. Hopefully next week. However, in the mean time, I was able to drop off my tissue samples yesterday to Dr. Wagle.

The Keppra seems to be doing it’s job so far though I do feel really fatigued as expected. I do feel feel a bit off-centered as well, but I think it’s another side-effect. Before, the dizzy spells and lightheadness would kind of come in waves, but that’s no longer the case. Both side-effects should improve and diminish as my body gets use to the medication.

Needle Biopsy Photos

Pics from my needle biopsy and first hospital stay back in February.

Typical Day Spent Before the Needle Biopsy

View from hospital room

Having breakfast in the critical care unit

Incision with staples

Staples removed!

UCLA Neurology

So on June 15th, I had my first meeting with UCLA. I met with a Dr. Perrin Pleninger from the neurology department. We went over my scans and she spent time explaining to me what we were looking at and things she was looking out for. She first focused on my “splenium” lesion. She said that based on my history, my EEG, and what she saw on the MRI scans, that the lesion is nothing more than a random spot in my brain and that it’s most likely nothing more. She said that my case doesn’t fit with someone who might have an autoimmune issue or issues with encephalitis or meningitis. She conferred with some of her other colleagues and they all came to the same conclusions. Suffice to say, I was pretty happy to hear this.

However, as for the lesion in my right temporal parietal lobe, she didn’t want to say too much about it and preferred that I see someone from the neuro-oncology department of which I was able to get an appointment this past Monday. I didn’t think I would get an appointment for at least a couple of weeks, so I felt very fortunate to be able to get one so soon. Dr. Pleninger explained that there is this multidisciplinary group called the “tumor board” made up of doctors from neurosurgery, neurology, radiation oncology, and and pathology that meets every Wednesday to review patients case files. It’s almost like have 3rd, 4th, and 5th opinions all in one sitting.

The one thing that did cause Dr. Pleninger some concern are the dizzy spells and lightheadness I’ve been having the past two weeks. I’ve also had a numbness sensation on the right side of my face, but only twice though and it lasted for just a couple minutes each time. However, I believe this might stem from the biopsy moreso than anything. It still hasn’t fully recovered yet and I still have some issues with it. Also, because the lesion is in the right side of my brain, it would affect the left side, not the right. Anyway, Dr. Pleninger said that what I’ve been experiencing might be mini-seizures, but is not sure if they might be a precursor to a more acute episode. The disheartening thing, or positive thing depending how it’s viewed is when she said that she’s really surprised I haven’t had a more acute episode considering the location and size of my lesion. She brought up that it might be a good idea for me to go on Keppra. She was concerned not only for my safety while driving, but for others as well. However, the decision was left up to me at that point, I think mainly because I hadn’t had an experience where I was disoriented and felt not in control. I decided to wait since my dizziness and lightheadness had gotten a little better the past couple of days and my appointment with neuro-oncology was near.

So on June 20, I met with Dr. Naveed Wagle from neuro-oncology. Similar to my meeting with Dr. Pleninger, we went over my history although since he had already taken a review of my MRI scan beforehand, we did not review it together. After going through everything, Dr. Wagle felt that the best course of action would be to have another biopsy performed. He believes that everything points to the lesion possibly being a low grade glioma, instead of the hamartoma which is the initial diagnosis. However, he said that it’s difficult to tell because the tissues taken in the first biopsy appear inconclusive based on the pathology report. However, he said that he would take my case to the tumor board to have it reviewed and to get a consensus of the next step to be taken. Also, at this point, he went and brought in another neuro-oncologist, Dr. Albert Lai. Dr. Lai repeated the same sentiments of Dr. Wagle and also proceeded to lay out course of action for the short-term that I could start now. First, they would like me to have a PET scan and another follow-up MRI. Also, they would like me to obtain the sample tissues extracted from my biopsy to have the UCLA neuro-pathologist examine them. Dr. Lai laid out two possible paths that could happen. He said that in order for them to feel confident that the lesion is not a low-grade glioma and therefore not needing a biopsy, the PET scan would have to be negative, the follow-up MRI would have to show shrinkage of the lesion, and the pathology report would have to be favorable. However, both Drs. Wagle and Lai feels this outcome to be unlikely. However, they both stressed that they’ll know more after the meeting with the tumor board.

In further talking with them, they both recommended that I start on anti-seizure medication. They both believe, similar to Dr. Pleninger, that what I’ve been experiencing the past few weeks were mini-partial seizures. Also as mentioned by Dr. Pleninger, both Drs. Lai and Wagle both said that the location of my tumor couldn’t have been located in a more perfect place that would provoke seizures. They stressed that for my well-being and those of others that I begin to take Keppra as soon as possible. So now I am on Keppra. Some of the side effects include fatigue (the most common), irritability, dizziness, and mood swings. Just taking it for a day, I already felt the fatigue and the dizziness that it can bring. However, it should pass after a month or so as my body adjusts to the medication. The more serious side effects is thoughts of suicide and destructive behavior. I’ll have to as my family and people I see on a regular basis to watch out for any signs.

Anyway, as of now, I am waiting for neuro-oncology to call me back regarding the scheduling of my MRI and PET scan and also on what the board decides. I am nervous, but I think I am ready to face whatever may come my way…

Post-Needle Biopsy

In April, I had my first follow-up MRI. Unfortunately, I had to go with another neurosurgeon as I found out that my original neurosurgeon, Dr. Nguyen, is not within my insurance provider network. The first neurologist I ended up seeing to get the results of my follow-up MRI to see if anything’s changed did not work out unfortunately. So I made an appointment to see another neurosurgeon, Dr. Devin Binder, whom I met last week. For this first follow-up the best news would be that the temporal-parietal lesion has not grown and that the splenium lesion would have reduced in size.

Dr. Binder brought up the MRI scans on his computer and we went over everything. I hold him how the operating neurosurgeon believes the temporal-parietal lesion to be a hamartoma. After looking at and considering everything, he told me that in his opinion, it’s not a hamartoma, and that as it stands, it is inconclusive as to what it might be. Looking at my follow-up MRI, he pointed out that the area in which the samples were taken were from the upper portion/fringe of the lesion instead of in the middle. He felt that this may have been the reason why the sample taken seems not very definitive. He ended up recommending that I have an open biopsy done to remove up to about 75% of the lesion. Or course I indicated to him that I very hesitant about this. Just from my first biopsy which was relatively non-invasive, it’s taken me awhile to recover, and I still don’t feel fully all there. I can only imagine how it will be after this recommended procedure, one that I really don’t want to go through. Luckily, as it seems to be slow growing, I’ve decided to seek an opinion from UCLA neurology as it’s only a month away. It was suppose to be my 2nd opinion for which I had scheduled back in late February, but now has become the de facto third opinion.

Anyway, since this whole thing has started, it’s been kind of difficult to cope with things. I’ve found focusing and concentrating on tasks hard to do. I don’t know if the biopsy is the cause of it or just the lack of sleep from worrying about everything, but I have noticed that my memory has gotten just a tad worse, and that I’ve been having a bit of trouble with conveying a clear and concise thought. At work, over half of the time, my mind is just wandering and racing at times thinking about a possible ticking time bomb in my head. I’ve tried to put on a brave face and act like my normal self, but in truth, I know nothing is normal and I’m not the same person. It doesn’t get any easier because I am a person who internalizes everything and sure enough, I haven’t really spoken much to people about anything really because I don’t want to burden them with my problems. When I have reached out, it’s hard too because they don’t exactly know what you’re going through. I don’t know if it’s the right approach, but I feel like this is a journey I am to take alone. Well, I am anxious to see what UCLA neurology has to say and to see if an open biopsy really is needed. I hope not, and I hope an alternative can be found.

My Story

This is my way of documenting what I’ve been going through this year. I am using this as a means to express some of my thoughts and also as a way to update friends and family.

Back in February of this year (2011), after coming back from Fresno for General Vang Pao’s funeral, I came down with a bad case of the stomach flu of all things that started on a Tuesday. It was bad, but the symptoms I felt were rather typical (body aches, headache, and of course diarrhea). However after the second day, my headaches went from run-of-the-mill to as if lightning bolts were going off in my head. I ended up first seeing my family physician and eventually went to the ER that Friday when my headaches didn’t dissipate even after my other stomach flu symptoms were gone.

My stay in the ER was about 4 hours long. About 1-2 hours in, with my IV drip and all, I felt much better. During this time, the PA (physician’s assistant) came to talk to me and to see if I still had wanted a CT scan. The PA felt that since I was feeling much better, that I probably didn’t need one. Thinking that I had already been there awhile, I figured, why not go ahead and have the scan ordered up, it couldn’t hurt right? I went ahead and got the scan. Come the 4th hour, the IV bag was about done and I’m thinking about what I’m going to have for dinner and was expecting to go home. That’s when the PA came by and delivered the bad news. She said that the CT scan showed a couple of dark spots in my brain and that I would need to get admitted and to have an MRI done. I was sort of in disbelief. The seriousness of it all didn’t really hit me until the ER nurses, who had pretty much been ignoring me for the most part (which was completely understandable as they were swamped that day and there were a lot more people that needed their attention than I did) started to really be attentive. I was moved from the chair I had been sitting in the ER hallway up until that point into a bed and it sunk in even more.

After my MRI, Dr. Tien T. Nguyen, the attending neurosurgeon came by and said that I have a 3cm sized lesion in the right medial temporal-parietal region of my brain that might be an astrocytoma. He also said that I had a smaller 1.5 cm sized lesion in the splenium of the corpus callosum, which he couldn’t really identify. He went through the options with me and recommended that a stereostatic biopsy be done on the lesion in the temporal-parietal. He also mentioned that he thought about doing a biopsy on the splenium lesion, but that two biopsies was too risky. I agreed to this and the procedure was scheduled in a few days for the following Tuesday.

The days in between were filled with a lot of bloodwork and observation and also with various doctors from infection disease and neurology trying to figure out what the splenium lesion was. A thought was that it might be caused by a rota-virus, but nothing was conclusive. The doctors felt that the best way to possibly determine the cause was to do a spinal tap. I couldn’t believe where I was. Just a few days ago all I could think about was meeting my deadlines for work and now I’m admitted in a hospital, scheduled for a brain biopsy, and now a spinal tap. The beginning of the week before I got the stomach flu felt like an eternity ago. Up to this point, I was okay, but the thought of the spinal tap really put me on edge and I realized that nothing would be the same again. However, a few hours before my scheduled spinal tap, I was told that it wasn’t going to be necessary for the moment and a wait and observe approach would be taken instead. I was relieved to say the least. For some reason, the thought of a needle being inserted into my spine was a much scarier proposition than one being inserted into my brain!

On that Tuesday evening, I had the biopsy performed. I believe it started at about 7:00 PM and I ended up waking in recovery around 10:30 PM or so. My last memory was staring up at the operating room lights fully aware and lucid and then waking up in recovery. I don’t remember anything else. The neurosurgeon told me that he had to make a few passes as the first pass didn’t acquire the needed tissue sample. After being discharged from the hospital, I met with my neurosurgeon about a week later for the follow-up. I do have to say though that Bridget and Warren, the two nurses who looked after me in recovery, were both excellent. Beyond excellent really. I owe them a lot for the care and attention they provided and I can’t really thank them enough.

So going back to my follow-up meeting with Dr. Nguyen, he removed my staples and told me that it wasn’t malignant. I asked him if it was an astrocytoma, and he said no and that he believes it’s a hamartoma. So instead of radiation therapy, he suggested just periodic MRI scans every two months to observe for any changes. Regarding the splenium lesion, he still believed it odd, but estimated that it might just be temporary inflamed brain tissue brought on by my stomach flu and that it should reduce or be gone by the time of the first follow-up MRI.