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.