Round 2 of ATG

[Ashley O.]

Hi Everyone,

I am going in for round 2 of ATG next week and would love to hear from anyone else who has had to have two rounds. I was first diagnosed when I was 34 weeks pregnant with my son in October 2010. I had Horse ATG and was on cyclosporine. I was transfusion independent by December 2010 and was declared in remission with totally normal counts by February 2012. I was weened off cyclosporine by October 2012. This past spring my counts began to drop and I was put back on Cyclosporine in July. My hematologist hasn't been happy with my response so we are doing another round of Horse ATG. Any experiences from others you can share would be great!

[ssdavi71416]

Ashley

Sorry to hear that you are back at a level to need ATG. Is it possible you could go to seattle for evaluation? I think they are rated as the best marrow transplant facility in the world. I wish you well and hope your numbers improve.

[dfantle]

Ashley, sending good thoughts that this 2nd round goes really well for you.

[Ashley O.]

Hi Scott, I would have to pay for my medical expenses to go to Seattle and since I have been well cared for in Vancouver, it's not an option I feel I need to explore at this time. I do not have a sibling marrow match and so a second round of ATG is the preferred option over an unrelated marrow transplant. Obviously, if the ATG doesn't work this time around than we will look at exploring a BMT as the next option. Thanks for your well wishes and we certainly do feel good about Seattle being so close should we need it.

[Marlene]

Ashley,

In the off chance the second round of ATG does not work, Johns Hopkins has been able to to do MUD and half-match transplants while, if not eliminating GVHD, has been able to greatly reduce the chance of it. So before going forward with a transplant, please look into what they are doing.

They've had good success with refractory SAA patients who are in your position.

Marlene

[aplasticgirl]

I have had 2 rounds of ATG. The first did not work and I was transfusion dependant to 12 months until they made the choice of either an unrelated BMT or a second round of ATG. After consulting with Dr. N. Young, they decided to try another round. Within 2 weeks of the second ATG my counts stopped dropping and I have never needed a transfusion since. That was back in 1998. Although I do seem to be somewhat dependant on a small dosage of Cyclosporine. My counts have continued to rise and are higher than they have ever been. Coincidentally, I was treated in Vancouver as well

[KMac]

Hi aplasticgirl,

That is wonderful to hear your counts have risen over the past 15 years post-2nd ATG without relapse! That is the sort of story I love to hear, and I'm sure very encouraging information for Ashley O.

If I should ever relapse, my Dr. and I have pretty much decided I will go for a 2nd round of ATG before resorting to BMT, perhaps with some eltrombopag should NIH feel I was suitable for a trial.

Hi Ashley O,

I attended an AAMDS webcast in July hosted by Dr. Townsley from NIH. If I understood correctly, she said she was preparing a clinical trial for relapsed SAA patients to add Eltrombopag to the ATG/cyclosporine for their 2nd round - since the past and current Eltrombopag studies have been promising.

I wonder if they would perhaps consider adding you to that trial if you were interested? My Dr. cautions me not to get too hopeful over experimental treatments, but Dr. Townsley did say the current clinical trial of ATG/Cyclosporine/Eltrombopag for treatment naive patients is going so well, they believe it could revolutionize SAA treatment. It is hard not to feel hopeful upon hearing that!

Just wanted to bring that up, and of course with a clinical trial comes unknown risk.

Best Wishes,
Kevin