LET THE TREATMENTS BEGIN

I began treatment on October 20, 2008, more than a month after diagnosis. That was too long in my opinion. Many people, including doctors, told me a month delay would not affect anything. I don’t buy that. If you find yourself in a similar situation ask your doctor if six months would make a difference. The doctor will likely answer yes. Then ask the doctor if that difference would occur on the 180th day or does it occur gradually over time. The answer is obvious. The sooner you get treatment the better your chance will be. The chemo routine my doctor prescribed consisted of two drugs administered at the chemo lounge over a 5-6 hour period. Most of the time is spent taking hydration fluid. You have to love the phrase “chemo lounge”. Would it be even more fun if they called it “chemo bar and grill” ? For those who are interested the two drugs are cisplatin and taxotere. At the end of this 5-6 hours they hook the infusion pump up to my portacath and send me home for two days. The drug being infused is called fluorouracil, also known as 5fu. 5fu is a very appropriate name for this drug because it screws you up 5 times over. It is very potent and virtually all of the side effects come from this drug. After two days on the pump I return to the “lounge” to be unhooked and receive more hydration. This is a 3-4 hour ordeal. This routine is repeated every 2 weeks. During the off week I would go back for a hydration session. I was anxious to start the treatments because it’s my only hope for survival. I really thought that I would be able to tolerate the chemo well for a number of reasons. I was told to expect to feel uncomfortable from the dyes they injected into me for the CT and PET scans. I felt nothing from either. I expected an adverse reaction from the anesthesia administered for the 2 surgeries. That didn’t happen. I was overweight so weight loss would not be an issue. Many people experience a loss of appetite. I didn’t think there was a drug or a disease in the world that could make me lose my appetite. So here I was, big, strong, and ready to handle this stuff. WRONG. After the first round of chemo I landed in the hospital. The 5fu FU’d me. I developed severe mucositis and mouth sores. This prevented me from eating and I could barely talk. I had a severe rash that prevented me from sitting comfortably. I felt lousy in general. And the problem that required hospitalization? A severe drop in my white blood count. This presents the risk of infection. It cripples the body’s immune system. It also prevents the other problems from healing. The symptom of this is a high temperature which I was warned to watch for. I wasn't watching closely enough. My wife Terry thought I looked pretty bad, took my temperature, and sure enough it was above the critical point. Had it not been for her I might have become infected with something. I had to be admitted to a private room to reduce the risk of becoming infected. I remained in the hospital for 3 days, receiving injections to boost the white blood count, fluids to keep hydrated, and general care to prevent infection and care for my ailments. During this stay I believe that a miracle occurred. Read the next post to see what I mean. Because of my severe adverse reaction to the first round of chemo Dr. George delayed the second round by a week. For round 2 she reduced the 5fu dosage by one half. I did better with round 2. Round 3 she increased it to three quarters and by round 4 she had it up to the full dosage again. I really appreciate the fact that Dr. George pushed me back up to the full dosage so quickly and did not baby me. I like I said, I made the decision to fight this fight with whatever was necessary. I did not want to go at it with partial doses. Dr. George felt I could handle it regardless of the initial reaction. She was right. There were several reasons I began tolerating the treatments better. First, with each treatment they were now giving me a shot of neulasta, a drug that boosts the white blood count. Nothing like downing “shots” at the ole “lounge”. Secondly, I was doing a number of things to prevent the mouth sores such as sucking ice cubes and using a prescribed mouth rinse. Lastly, and most importantly, with each treatment my liver function was improving. This was being picked up by the blood tests done with each treatment. As time went on my liver was working more efficiently to filter out the toxic effects of the chemo. This was also an indication the chemo was doing what it was supposed to do. A little bit of good news. By the third or fourth treatment the doctor introduced another drug, leucovorin, which is supposed to increase the absorption rate and/or the retention time of the 5fu. As luck would have it there is a nationwide shortage of leucovorin so they didn’t have any to give me after 2 doses. They have since substituted a drug called fusilev for the leucovorin but this is an “off label” use for fusilev which means that although it may do the trick it was not approved by the FDA for this purpose. I read that Spectrum Pharmaceuticals, the manufacturer, has applied for approval for this use. It is by the way a much more expensive drug than leucovorin which is a generic drug. Could this be why there’s a shortage of leucovorin? So now I was not only getting the full dose of 5fu that originally landed me in the hospital, but we were “boosting” it. And I was tolerating it fairly well. There were still some side effects, but they were all tolerable, at least so far. For anyone interested in the side effects look for the link under “Things That Are Important to Me” on the right side of this blog page. So after a stumbling start I was finally well underway with my treatment and it was going well. That was one of many blessings.