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.