View Single Post
  #3  
Old Mon Apr 2, 2007, 12:50 AM
Lisa V Lisa V is offline
Member
 
Join Date: Aug 2006
Location: Waimanalo, Hawaii
Posts: 401
ATG

James, as Andrea says, different people react differently, but don't be surprised if after the first infusion you develop severe flu-like symptoms, i.e. chills, fever, body aches. This seems to be pretty standard, and should pass within a few hours. With any luck it will be smooth sailing after that, as it was for my husband, but you just never know.

The cyclosporine and prednisone given as follow-up each have their own set of possible side effects, and again, it varies from person to person. Cyclosporine can cause hand tremors, excess hair growth, pains in the feet, among other things. It can also affect blood pressure and kidney function, so these things must be monitored, and the dose adjusted if need be. Prednisone generally gives the user a puffy-faced look while they're taking it, which disappears once it is discontinued. It can also cause mood and appetite changes, thrush (a yeast infection of the mouth) and less commonly skin rash.

How long you will have to take these things depends on what protocol your doctor is following, and also how you respond, but generally prednisone is given for about a month and cyclosporine for about 6 months. Some people do have to stay on cyclosporine indefinitely, and will relapse once the medication is tapered off. My husband is one of those, but hopefully you will not be.

At some point while they are waiting for your counts to rise you may be given growth factors, such as Neupogen (G-CSF) for white cell production or Procrit (EPO) for red cells. This is an individual thing, though. Not everybody gets them or responds to them, so it's up to your doctor whether he/she thinks that is appropriate.

It is unlikely that you will see an immediate response, but it does happen. Usually people continue to be transfusion-dependant for a while. How long to wait for a response is a hotly-debated topic. It is usually advised to give it at least 6 months before drawing any conclusions, but some doctors like to move in more quickly. You should also be aware that a response may not mean a return to full normal counts. That is what you hope for, of course, but the measure of "success" is if you can maintain counts above transfusion level. The body has a remarkable ability to adjust to lower than normal counts, and it is entirely possible to live a normal life as long as they don't drop dangerously low.

If you have any specific questions, feel free to ask.
__________________
-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
Reply With Quote