Cycle 2 - week 3 summary

Only real issue this week was some lingering steroid issues most related to sleep disturbances. His counts remain strong and his energy does not see too depleted.

Cycle 2 - week 2 summary

Will's issues with the steroids this week have been much less dramatic with the dose cut in half. He was still having issues getting to sleep at night, he was still requesting 'salt', and he was moody but it was a much better quality of life. He did have one day of diarrhea that has resolved, he did seem tired this week and used the word 'exhausted' a lot, and finally he did complain on two occasions of 'his arm' hurting. He would point to his left forearm when locating the source of his pain.

Otherwise he continued to do well and overall it was a good week for him.

Cycle 2 - week 1 summary

Will's behavior and mood swings stabilized this week as we were allowed to change his steriod dose. He had been receiving a dose 12 hours prior and 6 hours prior to his infusion of TPI-287. However, we now skip the dose 12 hours prior and there has been a remarkable difference. While he is still not quite himself the fequency of his outburst, and their intensity, have diminished greatly and his intense craving of food has also diminished with fewere outbursts over the denial of absurd food requests.

His counts remain strong, he is sleeping well, and his energy seems ok. However, this week he has been exhibiting some fear & anxiety. He was scared to be accessed for labs yesterday, he was scared to be left alone, and he did not want to interact with kids at the park. We'll monitor it going forward.

Cycle 1 - week 4 summary

Will still remained seemingly symptom free from any chemo related side effects. His steroid side effect issues have remained and his behavior around these issues is the same. However, with the week off of chemo/steroids the frequency of his mood swings and behavior decreased and gave him a better quality of life. So start cycle 2 we learned that he could skip his steroid dose that he usually takes 12 hours prior to chemo and simply take the dose 6 hours prior.

We'll see if this helps in the week ahead. Will went to clinic and was 28kg which is an all time high. We have to struggle with him all day over his food intake as the steroids have ramped up his appetite dramatically.

Cycle 1 - week 3 summary

Will's counts remaines strong this week, the 'sore' in his mouth (probably just a canker) has resolved and he his sleep seemed to return to it's previous schedule. The only impact thus far seems to still be related to the once a week steroid dose Will receives. THe night of, and the night after, his sleep is disturbed and his appetite is voracious. His mood is volatile, he can become unusually angryr, he is saying things and acting out in a manner he has previously never exhibitied (being defiant, kicking, spitting, hitting) and throwing tantrums over denied request for absurd amounts of food and drink. As we enter the 4th week of the cycle that did not require a dose of steroids or TPI we hope he returns more to his usual kind temperment. While always very active and fidgety he was never defiant, angry, rude, or defiant. Otherwise we see no other side effects from his therapy.

Cycle 1 - week 2 summary

Will developed a canker/mouth sore towards the end of the week.
Will normall would sleep 9 - 10 hours per night but was sleeping 12
Even with that sleep his mood and behavior seemed like a 4 year old in need of a nap. He was cranky, whiny, and moody and had more temper tantrums in a one week period then he has had in his entire life. He is always asking to eat more and more food and while we did not let him eat too much he went from 58 to 61 pounds in 1 week. This is the most Will has ever weighed. Other than the canker/mouth sore all of these sound like they may be steroid related which seems odd given how little WIll has taken.

The day Will gets his dose, and the day after, is a day where he has a very hard time getting to sleep, almost as if anxious or full of caffeine. A day or two after this goes away. His face still looks bloated as well.

Other than these seemingly steroid related issues he exhibited no other side effects than perhpas being a bit tired.

Cycle 1 - week 1 summary

Will received his first infusion of TPI 287 as a single agent on Day 1 of cycle 1 last Friday June 5th 2009.

The infusions was uneventful and Will received the required premeds including a 24 hour IV dose of zofran. As of today Will seems to have exhibited no side effects from last weeks infusion.

We gave him oral zofran at home on both Saturday and Sunday not because he exhibited any nausea but just to be safe. He was on no other meds other than daily bactrim and flouride.

He did not exhibit any signs of fatigue, neuropathy, or muscle pain and his appetite was normal. On two occasions he did claim he was going to get sick. However, he never did get sick and he did not exhibit any other symptoms or issues immediately following these statements or at any other time during the week.

While he did go to bed later than usual he slept uninterupted through the night with no issues.