Requesting success stories with ATG

[Stacerph]

My son has severe aplastic anemia, and he was treated with high-dose ATG 7 weeks ago. While I realize that it takes 3-6 months to mount a response, I am wondering what other people's experiences have been in the first 3 months. He is still transfusion dependent, and the time in between hasn't shortened at all. Our doctors feel that with each week that passes, he is less likely to respond. We are being told that if he doesn't respond at all in the next 6 weeks, we should go to transplant. Any thoughts?

[Gloria J]

Hi Stacerph,

I'm SAA, and was treated with ATG/Cyclosporine in April 2008. Six months post-ATG, I was averaging 3 1/2 weeks between transfusions. At the one-year mark, I could go close to two months between transfusions. June 2009, fourteen months post-treatment, was my last transfusion. I hit 11.2 on my Hgb a week ago, and I've been feeling great. MY WBC was close to 4, and my platelets were at 49K - all around good numbers for me.

I think I would have been very discouraged if I had felt that I should respond in the first three months, or I wouldn't respond at all. I'm living proof that some people respond late to ATG. I was offered the possibility to re-treat at twelve months, decided to wait out the summer, and was very glad I did.

A final note - I don't know how low your son's numbers were just before treatment, but I was being transfused with platelets and/or PRBC almost every two weeks pre-ATG, so I had a long way to go to get my numbers anywhere near normal. I'd suggest giving it a few months, or seeking a second opinion on a transplant. Best of luck, and hang in there!

[Hawaii Bill]

Hi Stacerph,

I was treated with ATG/Cyclosporine/Prednisone/Neupogen in Dec 06. Before treatment, I was getting 2 units of red blood every 2 weeks, and 1 unit of platelets every week, and my bone marrow cellularity was pretty close to zero. My response was pretty good; one month later I did not need any more platelets, and by 3 months, I did not need PRBC any more. But... at six months, my counts started a downward trend, probably because we tapered the cyclo too quickly. Even then, my need for transfusions was 2 units of PRBC every 2 months, and I only got platelets if I was having a surgical procedure-- a vast improvement over before the treatment.

After watching and waiting for a year, I decided to get looked at by two AA specialists (Dr Paquette at UCLA and Dr Young at NIH). Dr P suggested a large dose of cyclosporine. I tried it, and while it took a few months, my counts gradually began to recover.

Have you gotten any second opinions?

Wishing you and your son well,
Bill

[sandra]

Hi!

It's too early to worry so much. You should wait at least 4 mo, if not 6 before going to the next step. How old is your son? If he is a child, I however agree with your doctor's opinion that the next step should be transplant, not second ATG. It never hurts to start the donor search as early as possible, since this is a long and tedious process. You can always have the option of turning around if his counts improve.

My son was 4.8 years old when he was diagnosed with very severe AA on Nov 19, 2006 (counts at diagnosis: WBC 3.8, HGB 10.5, MCV 85.7, PLT 5, ANC 0.1) He had the ATG treatment on Dec. 5. His ANC was at 0 until Jan 9, 2007, then it went to 0.2 on Jan 12. I clearly remember the doctors being worried about his ANC staying at 0 for so long, that's when we did a preliminary search and found no good donors. Fortunately, his counts continued to increase. He had his last transfusions (both plt and rbc) on Feb 6. At that point his ANC was 0.6. After that, his ANC fluctuated for a long time between .7 and 1.4. Today his counts are in normal range.

Take care,
Sandra

[Missyblue]

I am a 48 yr old female, I was Dx SVAA in 11/07: RBC 13 Platelets 8, & three weeks later treated with horse ATG fallowed by Cyclosporine and prednizone. I was being transfused 3 or 4 times a week for the first couple months after. I have not needed a transfusion since 06/08. Today my RBC is 37.8, platelets 75 and whites 3.4.
Other then the giant monkey (disease) on my back I feel fine. I wish you luck with your son, keep him away from sick people and watch his diet. My Doctor said the chances of recovery in children are much better then in adults.

[Lisa V]

It seems like the doctors are often in more of a hurry to re-treat or move on to the next treatment than the patients are, at least those of us who have talked to other patients. When Ken had his first ATG the doctor said that if he didn't see any sign of improvement within one month, he wanted to give him a second round. We wanted to wait, having heard from others that it can take 3-6 months, or even more. He had his last transfusion 10 weeks after treatment.

In fairness to the doctor, his reasoning was that if a second round could be given within a month of the first, the two would create a cummulative effect which would be lost if we waited longer. That may be true, but one month is really too early to tell. He ended up getting a second round after a relapse, and this time they gave him double the amount and he responded twice as fast (5 weeks). Still, it has been a long slow process. Nearly 4 years later, his counts continue to creep up, but they're all within a safe range, so it's not a big concern.

[KimO]

My then 19 yo daughter was diagnosed with SAA at the end of 10/07, and had her ATG treatment the first week of 12/07. Not knowing that it was common after ATG, we felt as if we'd jumped from the frying pan into the fire as she suddenly needed platelets twice a week and RBC 1-2 times a week as well. However, she seemed to somewhat stabilize by the beginning of January to only needing blood products once a week. On around Jan. 17th she was borderline to needing a trx so we decided to hold off until the next appt. She was sent to the ER that weekend for throwing up blood (from an antibiotic) but we were excited to find that her platelets had increased to 48 even without the transfusion. January 10th, 2008 ended up being her last transfusion. Her counts are now all in the normal range and she finished her cyclosporine taper in 4/09.

Because there are so many that are still struggling I hesitate to post our good news but when Shauna was first diagnosed I needed every little bit of hope that this was something that could come out ok in the end. I still am very stressed on the days of CBCs and know that she could relapse at any time but we're thankful for how far God has taken her. We're also praying that her health allows her to finish her nursing degree so that she can be employed before she has to come off of our insurance.

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Kim O., mom to Shauna, dx 10/07, ATG 12/07, all counts normal and off cyclosporine

[JEZ]

Originally Posted by KimO

My then 19 yo daughter was diagnosed with SAA at the end of 10/07, and had her ATG treatment the first week of 12/07. Not knowing that it was common after ATG, we felt as if we'd jumped from the frying pan into the fire as she suddenly needed platelets twice a week and RBC 1-2 times a week as well. However, she seemed to somewhat stabilize by the beginning of January to only needing blood products once a week. On around Jan. 17th she was borderline to needing a trx so we decided to hold off until the next appt. She was sent to the ER that weekend for throwing up blood (from an antibiotic) but we were excited to find that her platelets had increased to 48 even without the transfusion. January 10th, 2008 ended up being her last transfusion. Her counts are now all in the normal range and she finished her cyclosporine taper in 4/09.

Because there are so many that are still struggling I hesitate to post our good news but when Shauna was first diagnosed I needed every little bit of hope that this was something that could come out ok in the end. I still am very stressed on the days of CBCs and know that she could relapse at any time but we're thankful for how far God has taken her. We're also praying that her health allows her to finish her nursing degree so that she can be employed before she has to come off of our insurance.

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Kim O., mom to Shauna, dx 10/07, ATG 12/07, all counts normal and off cyclosporine

Please never hesitate to post good news.... it is actually called "hope."