[Lisa V]

Hi Emma! Like you, my husband was diagnosed with hypoplastic MDS, although we still tend to think of it as AA. Either way, the course of treatment has been the same. He has had 2 rounds of horse ATG, the second because he relapsed when he tried to taper off the cyclosporine.

I'm not 100% clear on the differences between horse and rabbit ATG. The usual protocol in the US is to try horse first, and then if that doesn't show a response, try rabbit next. I've heard it said that the rabbit serum is both stronger and easier to tolerate, but patient experiences have not always born that out. Once you've done rabbit, however, most doctors don't seem to want to go back to horse, so if you started out with the rabbit serum, that does pose a bit of a dilemma. There are apparently other animal sera as well. I've heard from one person who went on to recieve both skunk and goat ATG before finally seeing success with the last one. This is extremely rare, though. For the most part, horse and rabbit seem to be the two you hear about.

Generally they say to wait 6 months to see a response to ATG, and you are getting close to that. Some doctors like to rush in before that, but given the slow response time of many patients, it seems best to wait and avoid unnecessary exposure to immune suppressants. Some patients can even take as much as a year to respond, but after the 6 month mark it does seem less likely. Sometimes a second round can show a response when the first one didn't. My husband was fortunate to respond both times, but he showed a stronger and faster response the second time. Part of the reason may be that they gave him a double dose the second time. I have not heard from any other patients who have tried this, but our doctor apparently consulted with a specialist who told him that you can get increased response from repeat applications if you increase the duration each time. His first treatment was 5 days of ATG, the second was for 10 days. Presumably, if they ever have to do it again, they'd give him 15 days. This might be something to ask your doctor about.

The other thing is that we did not even attempt to taper off his cyclosporine after the second round, just tinkered with his dose to avoid overtaxing his kidneys. I'm not sure if you have a chromosomal mutation that distinguishes your hypo-MDS from AA, but in our case they found a trisomy 8 after the first round, and there is evidence that people with that mutation will continue to be dependant on cyclosporine, so no taper.

I'm sure there are plenty of others who can respond to your questions about BMT, and you can read the postings in the transplant section of the forum. I have followed a lot of them, and it is a major undertaking, even under the best of circumstances! One good thing, you have youth in your favor.

Best of luck to you, whatever path you choose, and feel free to ask any specific questions that occur to you.