12.23.2008 - Platelet Count Rising

On 12.23.2008, I went in for what I thought was just lab work, but my chemo nurse added Avastin treatment in addition to the blood counts. I get Avastin via IV every couple weeks. It doesn't have any side effects that I can tell. I have a MRI in a week and perhaps we'll schedule chemotherapy a week after that. They could have scheduled chemo for the same day as the MRI, but it is treatment that I would need a ride for and I am not going to subject Carissa to finding a babysitter for all three kids or taking them all to the appointment to see if I can do chemo. We will wait for a blood test that guarantees that I could do chemo before we schedule the next round. My platelets were still low, but rising from what they were last time. My white blood cell count was low, but not low enough to require any treatment for it.

There isn't anything like learning how bad someone else's situation to let you know that you aren't so bad off. A guy and his wife sat down in the same chemo room that I was in and were chatty. They told me about his situation. He has the same sort of tumor that I had and in the same general location - R Temporal Lobe. He was older than me and I learned retired from the US Army. He was on long term disability and can't return to work, he is taking BOTH Avastin and Thalomid, he had aggressive regrowth that grew substantially in only a month, and they live in Colorado Springs, so they have to travel 64 miles to get to the hospital. I drive about half that - 33 miles - to get to the hospital. He and his wife wanted to know all about my situation and since I was stuck doing Avastin, which only takes a half hour now, I thought I would chat with them. Usually, I don't enjoy chatting about cancer stuff with other patients, it can be depressing.

12.17.2008 - Low Platelets

My blood test wasn't bad on 12.17.2008. White blood cells and hemoglobin counts were good, but my platelets are low. They weren't low enough to warrant any special treatment to raise them, but I need to be on the lookout for significant nose bleeds and bruising after hardly any contact.

12.10.2008 - Feeling Good

12.10.2008 was a scheduled CBC at the doctor's office. My blood counts were good and I received Avastin via I.V. line. Everything went great! I will likely have a MRI scheduled within the next few weeks. The only signs of my horrible flu/cold that remain are a light to moderate cough and a runny nose that needs to be blown often.

12.03.2008 - They Couldn't Do Much For Me

The past several days have been horrible. Now, we knew on Thanksgiving that Grant had a cough, but we didn't know it would turn into the nightmare of all colds and flues. I hardly ever get sick and have been suffering from this since Saturday. My nights have been so awful. I get hardly any sleep, toss and turn, and am so congested from the excessive phlegm. I had an appointment on 12.03.2008 to get more Avastin and have my blood counts checked, but I was so out of it that I thought I might run the risk of crashing my car. Carissa and I packed the kids in the car and she drove me to my appointment. I had already decided that I wouldn't be doing the Avastin IV due to my illness and I wanted to have my nurse and doctor assess my symptoms. The doctor told me that I did not have pneumonia. I told him about the restless nights, the neverending phlegm, the coughing, the hacking, the fatigue, etc. I also asked him for a prescription for something to help me sleep. The sleepless nights have probably been the worst thing I have been dealing with. Severe sleep deprivation can exacerbate the risk of seizures too and we don't want that. He also wrote me a prescription for a cough suppressant with codeine to help with the coughing. What I really wanted was to be magically alleved of all my symptoms, but that was not to be. I was only at work for 90 minutes yesterday and didn't go today. I don't anticipate being at work tomorrow either based on how this has been going. I just want it to end.

11.17.2008 - Three Day Chemo

11.17.2008, I am actually at the doctor's office at this very moment using my wife's laptop computer and the hospital's wireless network. I came in a couple hours ago and did a pulmonary function test, went to the cafeteria to eat lunch - something I often forget to do on chemo days - and then went to my doctor's office to get chemo.

This round is the drug, BCNU, which used to be administered over 72 hours as an inpatient in the hospital, but is now administered for four hours a day over three days. This one is something that usually doesn't cause much discomfort for me and I can drive myself to and from the appointments since there they don't give me any benadryl.

In a couple weeks, the effects will be more significant - I won't feel worse, but my blood counts will drop noticeably. We knew chemo would happen today because the last time I went in for a blood check - two weeks ago - my chemo nurse said that my blood counts were beautiful. I don't know if I had ever heard her use that word to describe my blood counts before.

I will be off of work 11.22.2008 through 11.24.2008 and depending on how I feel, I could be out 11.25.2008 and 11.26.2008, but probably not. The oral chemo drug that always accompanies my intravenous chemo, Temodar, can cause me to feel somewhat nauseous. We'll just have to see.

I was off work Friday of last week as well. That day off wasn't for my medical needs though, I took my wife to get laser eye surgery so she will never need to wear contact lenses or glasses again. It was a great investment. She is loving not having any optical aids.

I have had side effects from the Thalomid (the trade name for thalidomide). My doctor and chemo nurse have reminded me many times to be attentive to signs of peripheral neuropathy. It is tingling and numbness in the hands and feet. I have been having difficulty buttoning up my kids’ clothes and using zippers some times and never associated with the Thalomid. I was browsing a web site that talked about the effects of Thalomid and saw that this was a sign of neuropathy, so I brought it up to my doctor. He wanted to keep an eye on it and for me to let him know if it got worse. It wasn’t too bad of a problem

I then began noticing about a week or two ago that I had numbness in my feet. My right foot was pretty numb from the ball of my foot forward and my left foot was pretty numb just in my toes. I had thought my right foot was asleep sometimes, but then I realized that it was “asleep” all the time and that wasn’t right. I told my doctor about it today and he wanted to take me off the Thalomid immediately. This neuropathy (loss of sensation) would likely only get worse over time and is sometimes irreversible. It is better to stop the process as soon as it is this significant. Hopefully, everything will go back to normal after being off of it for a while.

There is an alternative to Thalomid, it is something called Avastin. Avastin is given every two to three weeks intravenously and takes about half an hour to administer. The big issue is usually insurance coverage. Many insurance providers don’t like to cover Avastin because it is expensive and a newer drug, so it doesn’t have the same established track record of some of the older drugs. It is an angiogenesis inhibitor, which means that it slows/prevents new blood vessels from forming in the tumor like Thalomid, but it has hardly any side effects.

On 11.18.2008, I am here again at my doctor's office, sitting in a leather recliner chair waiting for all the drips to leave this last IV bag. I already did my four hour BCNU session and am now almost done with the Avastin session. The first round of Avastin is given over 90 minutes. The second is over 60 minutes. Every subsequent dose is over 30 minutes. I feel pretty tired and some of it is due to the chemo and some of it is due to a restless night. The Thalomid causes significant fatigue and I was at the maximum dose for brain tumor patients - 1200mg - and now I am not taking it at all. It will take a little time for my body to adapt to not having it.

Oh, the drips just stopped dripping. Maybe I can leave now. I was gone for nine hours yesterday and I have been gone for almost eight so far today. You'll hear more from me tomorrow for my last dose of BCNU.

On 11.19.2008, I did not feel well after I got done with chemo yesterday. I just felt ill all evening and then had difficulty again going to bed. It was another rough night. Once I did get to bed, I woke up two and a half hours later to then go in and out of sleep from then until a little after six in the morning.

I wanted to try to get to the office early because my nurse said I could come as early as I wanted (her schedule is very busy today) and the earlier I come in, the earlier I get to leave. I ended up arriving only a few minutes early due to gridlock traffic on the freeway. It was seriously like traffic in the Bay Area of California. It took a hour and a half to get to the doctor's office.

I will be so happy to be done with this. It has really drained me. No appointments next week because BCNU usually causes delayed effects, so they will check my blood counts the week after Thanksgiving Day. One perk about being in the office on Wednesday is that they have a massage therapist that comes in every Wednesday. I asked my nurse to tell me when she arrives.

10.23.2008 - Bad Lab Results

I went in for lab results on 10.23.2008 and they drew my blood and five minutes later had my results, as usual. They can do it that fast because they are a hematology lab and don't send anything out. My neutrophil count was zero. That level alarmed my chemo nurse. Evidently, neutrophils are the most active of the white blood cells and are the first to attack microorganisms. My nurse wanted me to begin injecting myself with Neupogen daily and taking an antibiotic daily until my next appointment, which will be on Tuesday.

10.17.2008 - Another Round of Chemo & A Timeline

On 10.17.2008, my wife took me to my doctor's office and I got my intravenous line started and then went to radiology at the adjacent hospital and had a MRI. After that, the doctor met with my wife and I and reviewed the scans. The scans revealed that everything was stable and unchanged. The tumor is under control. While the chemo usually lasts a year, my doctor asked me if I could continue with aggressive treatment for four to six more months. His rationale was that he is treating an aggressive disease and most people don't survive it. His goal is just to get me to the three year mark, where the survival curve flattens out and most people survive indefinitely after that point. Since chemo is only something I have to deal with every four to six weeks, I thought I could do that. He wanted to keep me on Thalidomide as long as we could, possibly even up to three years. If I needed to lower the amount I was taking at some point, he thought that was quite reasonable. My body has adapted to the Thalidomide well and I don't notice the fatigue nearly as much these days. My wife and I felt all of it was reasonable. I didn't feel so hot from the round of chemo and will likely be laying around the house the whole weekend and probably Monday and possibly Tuesday as well. This one, while a one day session, usually kicks my butt pretty hard. What I had today was Irinotecan and Taxol. My wife had to drive me because I can't drive myself home after the chemo due to all the benadryl that they treat me with to prevent any allergic reaction to the chemo drugs. I will also be taking Temodar orally for the next five days and usually don't feel good until that is over with. Wednesday or Thursday will probably be the first day I feel good again.