Re: what to expect after 1+ month of treatment

From: Lisa
Date: 21 Nov 2004
Time: 13:39:04 -0500
Remote Name: 64.75.158.196

Comments

Jerilue, do you go to your brother's doctor visits with him, or are you getting all your information secondhand? Does he or his wife ask a lot of questions, or does he take the more passive approach? Often doctors will be kind of vague if they think the patient doesn't want to be overloaded with information that they can't process. If you want to get some direct answers, you pretty much have to ask direct questions, and even then there's a lot they don't know, and a lot of differing opinion. That's why I find sites like this one so helpful. If you read the forum archives and the stories page, you'll get a much clearer picture of the range of responses and the time frame that others have experienced, and there is a lot of medical info out there if you have the time and patience to use the links. Bottom line, there IS a lot of waiting involved. My husband was diagnosed and got ATG the end of July, and his doctor told us then that he expected to see a response within a month, but after reading everything posted here I now know that it can take a lot longer, even up to 9 months in some cases, so I feel more comfortable waiting. His counts aren't really climbing at this point, but seem to have stabilized to where he hasn't needed to be transfused in over a month, so maybe that is a first step, it seems to vary from person to person. If your brother is housebound, it's probably because his neutrophil count is low, and about the only thing they can do for that is give injections of neupogen, or some related drug. Do you know if that is what he was getting, or why it was discontinued? It doesn't work for everybody, so maybe that's why. I think it helps, though, for him to have an advocate in this process, whether it's his wife or you, or whoever. I don't know what your family dynamics are but sometimes it's hard for the one who actually has the illness to throw themselves into researching it, everyone has their own method of coping, and particlarly with men it can often involve some amount of compartmentalization and denial. When Ken was getting his ATG we were fortunate to have a really wonderful, caring nurse who encouraged me to become an active participant in his treatment, and to keep asking the hard questions, no matter what kind of response I got from his doctor. Since you're the one using this forum, and not your brother, maybe you can help him in this way too, provided that's something he feels comfortable with. It will also help you to cope, I feel sure. The first month was the hardest for me, but it's getting a lot easier. Hang in there! -Lisa (olotrop@hotmail.com)