Tuesday, March 6, 2007

A plan with potential

It’s freezing in New York right now…in Australian temp of Celsius it is minus 11 and with the wind factor it makes it minus 17. We had huge now flurries yesterday…it’s like very small snow flakes that blow around the air, and doesn’t stick to the ground, but there was so much that it made it hard to see when walking in it. Dylan had no clinic yesterday or today thank goodness, so he did not go out in it. They are saying we have a 50% chance of snow tomorrow and yes we need to go to clinic! Dylan has his medi-port surgery scheduled for Friday so we need to go to clinic tomorrow and Thursday for platelet transfusions to prepare for the surgery. He needs to have a platelet count above 50 in order for the surgery to go ahead. Dylan started Accutane yesterday and so far there are no side effects and he feels fine. I was in for a surprise when I spoke with Dr Modak on Friday. He said that he wants to meet with the team this week to discuss putting Dylan on the Beta Glucan 3F8 study now that his HAMA is negative. I was always under the impression that 3F8 (apart from the hot 3F8) was best used on patients with minimal to no disease, and for this reason I didn’t think it was worth putting Dylan through the physical pain of 3F8 if there was almost no chance of it doing anything for his disease. Dr Modak told me that this is not the case with the Beta Glucan 3F8 study. He told me that he had a patient with the same amount of disease as Dylan and that the child went to NED (No evidence of disease) on the study. Only now the child has relapsed in 2 very small spots. I would prefer Dylan to have 2 small spots than the several large areas he has now, so I have agreed to put Dylan onto the study. Dr Modak said that we may as well get in 1 cycle of Accutane and maybe even 2 while we prepare Dylan for the study. Dylan needs to have his medi-port in place first, which will be done this Friday, because the therapy involves IV access for 10 days and his temporary line he has now is playing up…bleeding and having trouble with access. Dylan will also need a full work up with scans and tests to enable him to enter the study, including another HAMA test to make sure it was a true reading. I have spoken to another family here who has their son on the Beta Glucan study and they said their results are great, with scans showing improvement every time. They said the pain is not a huge factor compared to the side effects of chemotherapy. The pain is short lived and treatable with pain relief medication. The worse part of the study is taking the Beta Glucan. It is a drink, and to a child it seems a large amount. It has no taste but it was described to me as the consistency and color of “snot” and that makes it hard to drink. This must be given everyday during the therapy. Dylan does not like the idea of that but I know he will do it with the understanding it may get him closer to beating this cancer. The therapy is 2 weeks on and 3 weeks off, so at least there will be a nice break in-between each round. It will not affect his counts so he will feel great and have a good immune system. So we finally have a light at the end of the tunnel again…well at least a plan with potential, this of course is providing that Dylan can continue to be HAMA negative.