A break from vincristine

I had wanted to write about the effects of vincristine since those side effects had started to be a major topic of discussion. Tim was getting more and more neuropathic. He had already developed tingling and numbness in his fingers and toes. Balance became difficult because the automatic small muscle impulses don’t happen anymore. And he had developed a pain symptom that felt like he was standing on gravel in his bare feet. This was not looking good.

But as has been his course, he has adapted somewhat to the side effects. After a few days of foot pain and some Tylenol, that has subsided. He still has no reflex action but we are told this is normal. And his gait has changed but in subtle ways. He has difficulty running and maintaining balance. But the good news in all this is that he gets a break from vincristine for a few weeks.

Yes, that’s’ right. The protocol has this built in break from weeks 10-12 where no vincristine is administered. So his last hospital stay really was a double whammy rather than a triple whammy. I think it’s good to be off the vincristine because he was getting worse being on it. The last hospital stay was also delayed so that Tim could go to homecoming and he was able to do exactly that. Other than being really tired afterwards and a scrape from running around in the park, he did really well. That took care of Friday and Saturday but then on Monday it was back in the hospital for cyclophosphamide and dactinomycin along with the “other” drugs (anti-nausea, a steroid and mesna). But no vincristine, yeah! He was a pretty tired pup from the weekend and hospital stay and so missed the early part of the school week.


At the end of that week was the marching band competition known locally as D-III. All of the high school marching bands compete at the BSU football stadium at 15 minute intervals. At the end while the judges tally their scores, the BSU marching band performs. It’s quite a show and a highlight of the marching band season. Tim was able to do his thing on the tuba but sitting in the pit as was planned. His school placed 3rd in their group and 3rd for the overall sweepstakes prize. Pretty good stuff and I’m glad he was able to help the band along the way.

Tim has also decided to stay on the cyclophosphamide for the duration (get off the clinical trial) because he is doing very well so far and feels that taking the more aggressive treatment approach is a better choice. The oncologist did say that if the treatment gets to be too much he would be comfortable with reducing the triple whammy sessions. So that decision is past us now.

Next up is the visit with the radiation oncologist to set up the radiation protocol which should start in a few weeks. But what’s really great is that he has no visit to the clinic this week at all and next week is just a round of diagnostic tests. It’s time to do a CT scan of the neck, chest and abdomen and of course get a blood count.

We’re hanging in there and time is moving along of course. We’re about one quarter of the way done already!

--bob