[Lisa V]

Well Lamilu, I'm glad you got that straightened out at least! I sure hope the missed time doesn't cause too many problems.

Yes, unfortunately you do need to stay on top of them, it's kind of scary sometimes. Even most oncologists outside of specialty centers do not have much experience with AA, and residents or attendings have even less, so if we can draw from a pool of patient and caregiver experience, we can help them to fill in the gaps. It really helps to have someone other than the patient who is willing to take on the role of advocate. It was the same with Ken, he could never remember the details of what they were doing or what he was supposed to do next, and often didn't know the right questions to ask. I only learned through reading and researching online, asking a lot of questions and making use of forums like this one. It helped me to get involved, and his nurse in the oncology wing really encouraged me to do so. It gave me some needed direction for my worried energies, and in doing so, it allowed him not to have to think about it so much, which is his preferred method of coping.

As for other medications post-ATG, that is more of an individual thing. Cyclosporine and prednisone are standard protocol, but anything else is likely to depend on what symptoms or side effects arise. Ken developed thrush in his mouth as one side effect of the prednisone, so he had to take something (it may have been Flagyl) for that, and some sort of lozenges too. Then another side effect was acid reflux, so he was taking antacids for that, and yet another side effect was a rash on his back, so we were putting hydrocortisone cream on that, etc. etc. He did have lots of side effects to the prednisone, but none of them was as unpleasant as serum sickness would have been!

There were other things too. Neupogen, which in hindsight I don't think was really necessary in his case, and Procrit, which his doctor told us he didn't really expect to help, but it did! These are not part of the standard protocol, and different doctors have different feelings about using them. A lot of people here have used one or both of them, though. Sometimes they help, other times not.