History #9 – treatment – induction – first hospitalization – last week Dec 2001 – Side effects: be afraid! Be very afraid!

February 3, 2007 at 6:53 am | Posted in APML, chemo side effects, chemotherapy, Diagnosis and treatment history, My initial treatment -- induction, Stanford Hospital | Leave a comment

So, in the first few days since beginning treatment, I had a pic line inserted, and began getting chemotherapy through it. I was also beginning to take ATRA, the small pills that make the difference in the good prognosis for my subtype of leukemia. And they had begun the process of getting me ready for the next challenges – the side effects of these treatments that would save my life.

As I mentioned, the only possible side effect of ATRA was a doozy – some people died initially while taking ATRA because of reaction to it. To have reactions not only would have been potentially lethal, but it would have required (if I survived) other forms of treatment. So they watched me closely for headaches, the initial sign of impending toxicity. I got asked it a lot. Very fortunately, I never did get the headaches.

But the side effects from the chemo were a different story entirely. You were guaranteed to get many if not all of them, and I spent much of the first few days of hospitalization getting prepared for them. First and foremost, because chemo wipes out your white blood cells you’re pretty much defenseless against infection. This would be true not for just this hospitalization, but for most of the first few months of 2002.

This caused numerous challenges. First, I had to be in an isolation room, on the hematology ward, which had all isolation rooms. Not the complete very strict isolation that bone marrow transplants have, but with a few restrictions to avoid infectious pathogens. You couldn’t have plants or flowers in the room (to avoid the contaminants that are in the dirt), and the diet couldn’t allow for any fresh food (once again to avoid possible contaminants). And no cheese or yogurt. So the food was all processed and/or canned. These restrictions would be worse when I went home, as you’ll see later.

The other problem with chemo, along with the chance of infection, was the effect it had on the mouth and the rest of the digestive system. A little biology is in order here. What chemo does is kill fast growing cells all over the body. The intent is to kill the bone marrow that produces blood cells, with the hope that what grows back is healthy bone marrow. But it kills other fast growing cells in the body beyond those. One that is seen in a lot of chemo patients is the loss of hair. Hair follicles have very fast growing cells, so when they die the hair falls out.

But the other group of cells that grow fast are in the digestive system. All of your digestive system – from the mouth, the throat, the stomach, the intestines, the colon, the rectum, everything – have fast growing cells. So, the chemo affects them as well. You may have heard of the vomiting and nausea that chemotherapy patients have. This is why.

For the initial purposes, though, the mouth was the biggest concern. From what they told me, mouth sores are very common, and pose a great challenge. Think of it – if you brush your teeth with a stiff brush, you sometimes have gums that bleed. This not a good time for patients who have a bleeding disorder to have bleeding gums. Also, during the time of chemo the ability to fight infection is gone, so this is a very quick and easy entry point for germs to get in the body that could kill. So, they had patients immediately get into the habit of good oral care that could be done throughout chemotherapy, using special foam brushes, special liquids in place of toothpaste, and special “swish and swallow” fluids to kill germs and other stuff in the mouth.

So, they had me begin to do oral care like that four times a day, and to be rigorous and diligent. They said good habits formed before any sores or other problems start solve problems later. Another thing they did was rather interesting. There was one really nice nurses aide who came in one day with a head shaver. She made the offer of shaving the head at that time. I was still a week or so away from hair loss from the chemo, but this made sense – instead of waiting for the hair to fall out, to look in the mirror each day to see if it was still there, and dreading the day it was gone, cutting the hair ahead of time gave me control over the situation. If I were going to have to lose my hair, I would rather do it on my own accord. It was quite empowering.

Still, even with a shaved head, frequent oral care, and processed foods, I felt fine. But all of this preparation was an omen of things to come. And I waited.

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