View Single Post
  #2  
Old Wed Apr 15, 2015, 02:04 AM
Hopeful Hopeful is offline
Member
 
Join Date: Jan 2009
Location: California, USA
Posts: 766
Quote:
Originally Posted by TASHMAC View Post
Hi,

I am just wondering whether anyone else has relapsed after having ATG (Horse) + cyclosporine. In my case I responded very quickly to the ATG (had ATG in November 2012) and within 4 months of having the ATG I had normal blood results. My doctors implemented a very slow taper of the cyclosporine. In January 2015 we reduced my cyclosporine to 75mg / day (last reduction was November 2014 were we reduced it to 100mg) and by March all my counts were down. My doctors then decided to increase cyclosporine to 200mg/day and have indicated that it may take 4 weeks before we know whether the increased drug has worked. We are 2.5 weeks in and my counts are still falling.

I am just wondering whether this has happened to anyone else and whether they responded? If they did respond how long it took to respond and whether they are ok now and simply needing to take a higher level of the cyclosporine.

I am also interested to know whether relapse typically means that the AA is only going to get worse or morph into something else.

I have yet to have a BMB.

Thanks.
Hi TASHMAC,

I am in the same boat as you, but I am 6+ years from my ATG. I would encourage you to get the BMB sooner vs later. My doctor delayed doing it for almost a year after I restarted the cyclosporine. My marrow was slightly hyperplasia by then and was morphing. I regret not knowing whether my marrow was hypocellular at the time of my relapse, as this would have been a clue that an immune attack was going on vs something else.

I am conflicted on using cyclosporine alone as a salvage treatment. I am currently taking a low-dose of cyclosporine, and my counts continue to fall. I know that a few people on this forum were able to restore normal counts on higher dosages, but I don't think it was long-term before relapsing or other cancers occurred. I am interested to hear whether there are any long-term survivors out there on cyclosporine salvage treatment.

On the flip side, if you had a robust response to the first round of ATG, the literature that I read seems to indicate that you will likely respond to another round of ATG/ALG and that relapsing doesn't have a negative impact on long-term survival. That's why I wonder whether it is better to try to band-aid with cyclosporine vs going for the big guns with ATG.

I am interested in what you learn, and wish you the best!
__________________
55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
Reply With Quote