Need advice: how to decide if 2nd ATG treatment is worth it????????

[susansr]

Folks, I need some advice. Nearing my one year anniversary since 1st treatment of horse ATG. Platelets still hover at 24-29,000, never got higher But am transfusion-free. I do need RBC transfusions every 2-3 months to maintain a normal level.
So big question: since I never got a great response to first treatment of ATG, can I receive some benefits to a 2nd treatment? From what I've read, it sounds like people get half the response of the 1st time. But, what if recipe is changed-duration of treatment for example. Also, do I stay with horse?

Would love some feedback!Thanks.

[Lisa V]

It would help to know what your other options are, Susan. If you don't have a BMT match or are past the recommended age, I would definitely try a second ATG.

It sounds as if you have had some degree of response to the first round, so that is reason to be a bit more optimistic about the second. Your Plts are about where Ken's were following his first ATG. He did become RBC tx-ind too, but never attained the levels he has reached since getting the second round (procrit helped too). I'd talk to your doctor about the possibility of increasing the duration/dose the second time, as we did. Unless you had a problem with the horse, I'm not seeing a reason to switch, particularly now that studies have found it to be more effective than rabbit.

[Hawaii Bill]

Hi susansr,

Your case sounds like mine. I responded well to hATG tx in Dec 2006, but relapsed to where my platelets hovered in the low 20's, and I needed 2 RBC units every 2-3 months. My doc wanted to do a second ATG, but I saw Dr Paquette at UCLA for another opinion, and he just raised my Neoral dosage from 75mg/day to 200mg twice a day. In 6 months, I was transfusion-independent and my platelets have since climbed to the high 60's, hemoglobin is high 11s, and WBC and ANC are normal or low normal.

So one option is to see another doctor, an AA specialist, and let him/her review your case.

Another option is to be evaluated for a clinical trial at NIH. I tried that shortly after seeing Dr Paquette, and they recommended I stick with the increased Neoral dosage.

If there is a second round of ATG, my understanding is that they increase (double?) the dose and spread it over 8 days.

Sometimes I wonder if I should have gone for the second dose of ATG, since I will probably be on the increased dosage of Neoral forever. But there were risks involved with the use of prednisone and ATG that I did not like.

If I truly had it all to do over again, I would have gone straight to NIH!

Please keep us posted!

Bill

[susansr]

Lisa and Hawaii Bill: thanks for your thoughts about this matter. I was considering a BMT at one time, but, since there is not a perfect match and my condition is stable enough, will not consider transplant right now. Keep it in the back pocket, though.

So I am 55 yrs old. I did seek a 2nd opinion,Bill, and doc was also thinking 2nd dose of ATG. This doc did suggest administering drugs like Procrit, but my doc is more conservative. He is not in favor of giving drugs still under trial runs or drugs with limited success or given to tiny populations of patients.

I am still pondering if I should submit my records to NIH. Do appreciate what you stated. Can't beat that Dr. Young is there and "the" authority on AA.

Will keep you informed. I need a routine colonoscopy this year; will need to get that done 1st, and then move on with ATG situation.

By the way, Happy New Year!!