Re: what to expect after 1+ month of treatment

From: Becca
Date: 21 Nov 2004
Time: 15:04:03 -0500
Remote Name: 68.228.36.80

Comments

Jerilue.....I agree with Lisa's post that if extremely specific questions aren't asked, the doctor will probably offer vague, general information. To alleviate this problem, one strategy is to continue asking specific questions and establish a dialogue with the doctor so that he/she knows to expect tough questions from you during appointments. In my case, they have gotten used to it! One of the problems with aplastic anemia is that there are too few patients to have much reliable information about response times. One month is really, really early to expect a response, but it's happened. For example, some people on this forum who have had ATG have responded in 3 months or less. Others have taken 3-6 months. For some, it takes a year or more, and still, for others, the first round either yields no response or a partial response, requiring another round. (Look for Mechelle's posts on this forum--she was a slow responder but has had a good recovery. Andrew, also a member of this forum, took almost two years to become transfusion independent. Also, there are several "letters of inspiration" on www.aplastic.org, one of whom is about a woman who had ATG, did not respond for 7 months, did another round, and responded 4 months after.) The way that my doctors have put it to me is this: every person is different, but it's the long-term trends that count. Expect counts to fluctuate slightly, but the goal is to have the overall trend be upward. Two things that I learned during my experience post-ATG: steroids (like Prednisone) may falsely elevate counts; and cyclosporine levels tend to fluctuate a lot in the first ~8 weeks, requiring dosage adjustments. You probably know that about 2/3 of people respond to ATG; as you'll find on this forum, there are "fast" responders, "slow" responders, and nonresponders. Most educational material that you receive will tell you that a response should occur within 6 months, but the range is considerably larger than that. As far as your brother's low white count, I assume that he is homebound because of neutropenia. What is his ANC? When I've been severely neutropenic in the past, I tried to have some fraction of a life by going out at strange times (movies during the week in the middle of the day to avoid crowds and school-aged children; restaurants during the week in the middle of the afternoon; etc.) It might lift his spirits (and who knows, maybe his white count!) to go for walks and/or exercise indoors at home. If weather is an issue, he could mall-walk before the stores open with a mask to protect himself. Hope that this helped--hang in there!