3.5 Months after ATG treatment/ no response.

[ssdavi71416]

I was diagnosed with SAA in late March 2011. 51 year old male. I underwent ATG treatment April 5-9th.

1.Require a RBC transfusion every 2-3 weeks.

2. My HGB level is between 8.7-and 7.0. I usually receive a RBC tranfusion when around 7.0 hGB.

3. I had my last RBC Transfusion 7/15/2012.

4. My sister is an Bone Marrow match.

My results 7/23/2012

HGB 8.3
Plateletes 13
WBC 1.2
Neuophiles 41 % or 480 absolute counts.

My question is this. I don't seem to have any respsponse at this point. The Dr says 6 months. Should I be seeing some response? Should I push for retreatment or something else(BMT).

Thank you for your replies.

[Neil Cuadra]

ssdavi,

Many patients respond quickly to ATG if they are going to respond at all, but there are exceptions. Some patients are "slow responders", which is why many doctors use the 6-month guideline. After that point, if there is still no response, they may recommend a transplant or another round of ATG. (They may also recommend more "wait and watch" for patients with "livable" counts, but probably not for transfusion dependent patients.)

It's great news that your sister is a match, but there are still good reasons to avoid the risks of a transplant if drug treatments might stabilize your counts. At age 51 you are not in the "senior" group, for whom full transplants are often ruled out, but neither are you in the child/adolescent group, for whom transplants have the highest success rates.

You are fortunate to have a few choices, but that makes it harder to decide what to do and when. For example, if your ATG response finally kicks in, or if another round of ATG could restore your blood counts, you could avoid a transplant. But if you will eventually go to transplant, it's statistically better to have had fewer transfusions. It almost seems like you need a crystal ball to know what to do, but that's where the experience of the doctor comes in. A good doctor who has helped many aplastic anemia patients will have learned how to balance these tradeoffs.

When you have doubts about your doctor's advice that's a good reason to get a second opinion, especially if you aren't already being treated at a major center or by a doctor with aplastic anemia experience.

I suggest that you read the Response to ATG thread for some other perspectives on ATG responses.

[tytd]

Hello ssdavi,
Another promising therapy for some refractory severe AA patients may be Promacta or eltrombopag. A recent research study from the NIH showed some response in 44% of a group of refractory patients. More than 6 months of ATG and cyclosporine had to have passed before pts were eligible for the study. Here is a link to the abstract, http://www.ncbi.nlm.nih.gov/pubmed/22762314. Good Luck tytd

[NLJabbari]

Hi! My son responded at around the 6th month...and yes, it was at around the 6th month that we saw a gradual shift in counts climbing upwards. He was transfusion dependent prior to this shift.

Hope that helped...

[ssdavi71416]

Thank you all for your response. As you know it is very difficult to watch and wait for the treatment to work. The voice of the community that has delt with bone marrow failure is comforting. I have seen some levels come and go. I hope for the best.

Thank you

Scott

[Lisa V]

It took my husband 4 1/2 months to respond to ATG the first time. His doctor wanted to repeat the treatment right away, but having heard from other forum members, we opted to wait. That turned out to be the right choice for us. Some take longer than that.

Since your sister is a match, you might ask about moving forward on the transplant front, but with the understanding that it wouldn't actually take place before the 6 month mark. They're not going to want to go through with it if you respond in the meantime, anyway. The whole process is, by necessity, very flexible, and it takes a while to set up.