Farewell Vincristine

Vincristine has been the most consistent chemo Jacob has received. Initially Jacob would have sharp, intense pains in his jaw. It would come on suddenly and thankfully taper off within a few minutes. We found that getting Jacob an ice pack to hold on his jaw was helpful. Before Cytoxan got hold of Jacob's sense of taste (ruining everything including ice cream), Vincristine reduced him to a softer diet. Jacob didn't like to open his mouth wide or chew anything too crunchy. Interestingly the whole extreme jaw side effect went away after about a month - like his body just accepted that it was going to be pushed into his system weekly.

For most patients, Vincristine doesn't cause nausea. But that rule didn't apply to Jacob. Many weeks after his Vincristine push he would still complain of nausea for days after chemo. Then his peripheral neuropathy seemed to pour on him all at once. This condition is supposed to be temporary, but it takes time to repair the nerves. Many patients develop "drop foot." Jacob has had some limitations to his feet and very tight muscles through his calves and thighs. But his hands and thumb muscles took the hardest hit. In the course of three weeks (two of those when he DID NOT even have Vincristine) the symptoms got real bad. Indicating that it lingers in his system longer and the side effects take time to subside. His hands curled up and he rarely extended his fingers. During those same three weeks his eyelids drooped. He looked very tired all the time.

Did Jacob whine and complain? No. (He saved his complaints for when he had to empty the dishwasher). I'd watch him try to pick up a piece of paper - he used his hands like flippers. I'd ask, "Jake, did you notice that your hands aren't really working?" He said, "yeah." I asked him if he knew why and he'd just say no. If you didn't know what to look for it could easily be missed because he compensated. Jake has always been very creative when he wants to do something. He could no longer do shirt buttons or snap his pants. (This is the kid that would spend 30 minutes at age 2 to do his buttons "by MYSELF!" With his skinnier body, he'd just shimmy his pants up and down. If that didn't work, he'd resort to asking for my help - which I did no questions asked.

He may be behind on some of his cursive writing. Using fine motor skills could sometimes be frustrating. He stopped playing with his Lego models.

Some days I'd look over while he was watching television and he'd have one eye closed or a hand over one eye. He was seeing double, but he found that if he closed one eye he could see better.

I was angry at Vincristine and worried that some of the "temporary" effects would become permanent. We brought it up with his oncologist and upon examination she could see that the dosage was too much for his system. Apparently Jacob metabolized it more slowly so it was in his system longer. The dosage was adjusted and we never saw the eye droop anymore. With physical therapy Jacob has been able to intercept the effects of Vincristine and maintain his muscle strength. Now that he has had his final dose, we hope to have his hands and feet recover completely.