3 months past ATG and still no improvements on blood counts

[Bishbop]

Hi every one, guess I'm just looking for a bit of hope really, I had my routine BMB on Wednesday and a meeting with the professors before hand, (the results will take 4 weeks) I felt so deflated when I left, I thought 3 months was when you started to see an improvement but it turns out they expects to see some improvement between 2-3 months, I am 3 months and nothing has improved in my counts, I'm still having platelets twice weekly and blood every 2 weeks (2 units) and I'm still severely neutrophinic with the rest of my white blood cells fluctuation in small amount,

However my ANC has been at 0.06 since the treatment settled and last Friday where 0.09 and this Wednesday (5 days later) were 0.16 I'm holding on to this as a good sign and hope they continue like this although the professor seemed to dismiss it as there is no trend,

I guess what I'm asking everyone is what was there experience at 3 months post ATG? Should I hold out hope it will still work? X

[Marlene]

John did not have AGT so I can't give you first hand experience, but from what I've read on the forum, it can take up to a year. You may want to try a search on the forum for ATG response times.

[KMac]

Please take a look at the thread "A very slow but very good recovery from SAA." if you would like.

I too showed little improvement at 3 months, but 30 months later I'm doing much better.

There are no guarantees with this rotten disease, but there are many paths and time frames towards getting better. And with the introduction of new treatments such as Eltrombopag, even if the ATG does not work for you, there are an increasing number of options.

It is extremely hard to be patient, especially in the face of fear and depression. But my marrow was so hypocellular at diagnosis (~1%) that the specialists at my treatment center told me to expect to wait closer to 6 months to see significant improvement. It was about month 9 that I really started to see big improvements in my counts.

[Hopeful]

Hi Bishbop,

If you check out this article, you will see that the response rate continues to improve at 3, 6, and 12 month after Rabbit-ATG.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3166096/

One predictor of response is the ARC (Absolute Reticulocyte Count) at diagnosis. Those with an ARC of greater than 25,000 at diagnosis were more likely to respond to IST.

Waiting is the hardest part, but it is early to give up hope! Best of luck and stay healthy!

[rada_rada]

Don't give up hope. I was diagnosed SAA on 4/21/2014 and started hATG on 4/28. At first my numbers slowly dropped to the point where I was receiving HLA matched platelets every other day and 2 units of reds every week. The entire time my ANC was 0. Finally at the end of July (neat my 3 month mark) I finally started getting some neutrophils. So technically you are ahead of me.

My last transfusion was 1 unit of reds on Aug 15. As of last Tuesday I was at 119 platelets and 2.9 ANC. I just started my cyclo taper last month.

Give it some time and be patient. Also, my numbers jump up when I exercise.

[Susan]

Oh, good tip, will have to force myself to exercise:-) I don't ffel like but know it helps provide energy.

[Susan]

Kevin, thanks for all your concise & detailed posts! I'd really appreciate it if you could provide some perspective on my new AA posted question on choosing a hem for ATG treatment. Just considering whether flying to the most experienced with it is really worthwhile or if I should be fine with local Chicago options at major teaching hospital.

Would you have any info or links on infection risk according to ANC counts in general. Following severe neutropenia diet, hand wash, etc but wonder if there's any studies on it. Do many people do ok for a long time at 200?

I could consider waiting to see if my ANC, ALC and ARC counts go up enough to be in the range where I may respond better. But then my age will go up, not good!

[KMac]

Hi Suz,

I replied to your post:

Input Please! ATG & CSA Trtmt: Local or Best Dr Away?