Thread: and now?
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Old Tue Nov 2, 2010, 08:53 PM
Lisa V Lisa V is offline
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Join Date: Aug 2006
Location: Waimanalo, Hawaii
Posts: 401
Hi Rui,

I too am curious about your father's platelets. How is it they haven't transfused him more than once if they remain so low? Our doctor would always order a transfusion when Ken's platelets fell below 10k, although I've heard that other doctors and patients use different target numbers.

Generally speaking, it is advised to wait 3 to 6 months after ATG before you decide that it's not working. Occasionally a patient will start to see a response after the six month mark, but if you haven't seen any signs of improvement up to that point, it seems less likely that you are going to see it after that without repeating the ATG. It is not absolute, but the majority of responders will respond by then. If he had his first treatment on May 13, then he is getting very close to the six month mark. Looking at the counts you have posted, I'm afraid I am not seeing any clear signs of improvement in that time. The clinical definition of response is to no longer need transfusions, but have you seen any increase in time between transfusions? If so, that could be a good sign.

I'm certainly not going to argue against getting a second opinion. It never hurts to get some input from another qualified specialist. If they agree with his current doctor, then that will help you and your father accept the decision. If they disagree, then hopefully they will give you some valid reasons why he should either wait or pursue a different course of treatment. Frankly, however, I'm not sure what that other course would be. At his age, I doubt they would consider a transplant, so (assuming his diagnosis is correct) it seems like the main options are to do another ATG or to do nothing.

A second round of ATG can be more successful than the first. Although my husband responded both times, his second round produced a stronger response than the first. He was lucky to get in and out of the hospital fairly quickly, however. I can understand with all that your father has been through that he would not want to repeat that experience, but unless his counts start to improve soon, another round may be his best hope.
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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