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Monday, September 26, 2011

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.

Saturday, September 10, 2011

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.

Wednesday, August 31, 2011

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.

Monday, August 22, 2011

Wednesday, August 10, 2011

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.

Friday, August 5, 2011

Tuesday, August 2, 2011

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)