03.14.2010 - Seizure Control Sans Side Effects

For the past week and a half, I have been using Vimpat in addition to Keppra. The Lyrica was cut out of the plan at least a week or so before that after it caused my feet to swell, which was a very bad side effect according to Drugs.com. It has been working well. My health has been good overall, though I haven't been able to run. I ran a few times a week ago and my knees hurt. I have been trying to focus on weight lifting instead.

02.19.2010 - Seizure Control With Side Effects

I saw my neurooncologist today after my MRI scan and the tumor was still stable and unchanged, which is great. I started another five-day round of Temodar, an oral chemotherapy agent and will be doing that monthly. The plan now is to continue with that until October, which will be three years post-diagnosis. I had to stop taking Avastin because it was causing me to have high blood pressure. He wanted me on either Temodar or Avastin until the three-year mark. On 01.25.2010, I saw a seizure specialist and she took me off Lamictal and put me on Lyrica. I now take Keppra and Lyrica. I haven't had seizures since then, but Lyrica can cause weight gain and I have been slowly gaining weight. That side effect really sucks! I talked to my neurooncologist about it and he said there are other drugs that could work without that side effect. Let's see how much weight I gain before I object to the effect.

12.31.2009 - Looking Forward To No Seizures

I am looking forward to a year of no seizures. We are still adjusting the anti-convulsant medication and the addition of Lamictal has helped. I had my last appointment with my neurooncologist for the year.

Avastin seemed to be a drug free of side effects, but that may not be the case. My blood pressure has been elevated the last couple of visits to the doctor's office and I am usually someone with textbook pressure - 120/80. I never have high blood pressure. I asked my chemo nurse whether any of the drugs I was taking can elevate blood pressure and she immediately replied "Avastin." I will now have to take my blood pressure a couple times a day for a couple weeks and see if this elevation is going to be a regular thing. If so, I could either continue taking Avastin and possibly take drugs to lower my blood pressure or stop taking Avastin.

My blood counts were all good. I have a five-day round of oral chemotherapy with Temodar to begin this evening. It's never fun, but it's not that painful either. I like to eat at night and you have to take Temodar on an empty stomach. It's only five days though.

Having no more seizures is one of my goals for the new year. It's not like I have control over it though.

12.15.2009 - A Day in the Emergency Room

My wife and I spent all of 12.15.2009 in the emergency room. I woke up and had a partial seizure and then a migraine headache. I have been having more migraine headaches recently. My prescribed pain medication didn't do the trick. It had been two hours with no pain relief. My doctor wanted me to come to the emergency room as soon as possible. We found people to watch our children and my wife took me to the emergency room at the hospital that my doctor is affiliated with. We have a hospital only three miles away, but that isn't the one my doctor is affiliated with.

Service in the emergency room was SLOW. I guess only those people spurting blood out or who came in via ambulance get fast service. My migraine headache was finally gone after five hours had passed from the time I took the oral pain medication that morning. A MRI scan revealed that the tumor was stable and unchanged. We are trying to work on dealing with the seizures and adjusting medications until I don't have any more break through seizures.

11.11.2009 - Good Scan, Yet Had A Seizure

I had a MRI today and the scan went well. No new growth and things would seem to be going well, but I had a seizure recently and that set me back a bit. The doctor adjusted my medication in response to it and I now I can't drive for a while. It is very frustrating to be prevented from driving. This tumor is making me angry. I am sick and tired of problems from this. Why is this thing in my life anyway? What am I supposed to learn from this experience? I think it is time for someone else to take a turn with the evil tumor and give me a break from it for the remainder of my life.

10.26.2009 - A Bad Night

Since stopping intravenous chemotherapy, I have still continued with oral chemotherapy consisting of Temodar for five nights every three weeks or so. The last of the five nights from this most recent round was Sunday night and it didn't go so well. Usually, I just experience discomfort from the constipation that Temodar causes and the inability to eat in the evening, which I often do. You are supposed to take Temodar on an empty stomach and wait a couple hours after eating before you take it.

Sunday night, I ate a decent size dinner and then a little later took my evening pills. I always take Levetiraceta (generic Keppra) each day to prevent seizures and I take my nightly dose with Ondansetron (generic Zofran) on the nights that I have to take Temodar to prevent nausea, which almost never happens (the nausea). I took the Temodar when I meant to take the other pills and then when it was time for bed and I probably would have had an empty stomach, I took the other pills.

At 0200 hours, I woke up and felt sick. I hoped it would pass, but it didn't. I went to the bathroom and perched myself over the toilet and vomited. I didn't think that this small error would cause that to happen. I am tired of all these drugs and perhaps it is time to stop taking Temodar. When I went to the doctor's office on Wednesday, 10.21.2009, and had IV Avastin and started nightly Temodar, my blood counts were lower than was expected but okay to proceed. The next visit will be a consult with the doctor an a MRI. How much more chemotherapy, even oral chemo, can my body take?

09.09.2009 - The End of IV Chemo

Yes, it is real this time...it is the end of intravenous chemotherapy for me. I had a MRI scan of my brain this morning, as I usually do every eight weeks and the scan showed no new growth or activity in the residual tumor tissue. After I have the scan each time, I always see my neurooncologist and we discuss treatment and where to go from here.

He invited me to do eight more weeks of chemo to bring me to the end of October, but I declined. He invited me to try etopicide in oral form, but I declined. I said I was willing to continue taking temodar and he was perfectly alright with that. The present plan is to do my five-day temodar regimen every three weeks accompanied by one 30-minute avastin session at his office. Avastin is not chemotherapy. It doesn't make me sick, it doesn't make me drowsy, it just helps slow the growth of rapid growth cells.

I was doing five-day temodar sessions each time I had intravenous chemotherapy, which was usually every four to six weeks. Temodar is taken orally before bed. I will need to go into his office to have my blood counts checked every week and a half and we'll see if doing it at three-week intervals works out.

Both Carissa and I carefully considered this decision and prayed a lot about it and we feel it is the right decision. Haven't I done enough chemotherapy? I think so. I should miss less work, feel better, be able to grow my hair back, and spend less time with a needle in my arm.