After 8 wks ATG.. Dr pushing BMT

[Heather8773]

Would anyone pls share w us their experience w ATG response at 8weeks?
My husbands only sign of change is that he hasn't needed platelets in 4wks but they are at 18.
Bc he is still needing blood every 2 wks his Dr thinks the ATG is not going to work and in 2 more weeks wants to get serious about a BMT.
I am so sad bc there is no way to know if that will be a good decision or not until it's done. That scares me

Any thoughts appreciated.

[pedro]

I had a similar experience at that point ,however my doctor told me from the beginning that it might take 3 months to know if it was going to work .my cell numbers were not responding adequately so was taking nuepogen for the white cell count , and an injection for red cell count I think it was eprex .It ended up working in the end but it doesnt change the uncertainty while your in the middle of it .

[NLJabbari]

I've always known the post ATG response waiting period to be 3 to 6 months. As far as the transplant "Talk"...yes, you should be talking about it (PLAN B) and get the search going just in case it should come to that. A transplant doesn't happen quickly as there are certain steps to take that can take quite a while to organize. If your husband doesn't have a matched sibling, "The Search" for a Matched Unrelated Donor (MUD) in and of itself might take a while. It's not a bad idea to get the ball rolling just in case.

Hope this helps...

[ssdavi71416]

I had absolutely no response for 4 months. I started responding sloooowly. As NL said it might be good to get the ball rolling? I don't think they will typically proceeded until the six month mark. The PNH may change the approach. Part of the equation is his age. Best Wishes.

[Snuuze]

2 months seems really soon to me for a response. I waited for the 3 month period to pass, the 6 month period to pass, and finally after 8 months it was as if the switch finally got turned on. BMT wasn't an option for me, but I sure got tired of going in for transfusions every week or less. The thing about this disease, as you probably already know, is that everyone's response time is different. If we expect to respond at the short end of the time frame, we can set ourselves up for frustration and/or disappointment.

[DonnaM]

At 8 weeks out from my ATG treatment, I was only receiving transfusions of platelets, which were 16. My WBC was good -- it was over 3, and my HGB was ranging between 8-9, so I didn't need transfusions for that. My doctor and his staff thought I should be responding better by then and had brought up the subject of BMT a few times. I wanted to wait a while and see if my counts would come up. Even though my platelet count was up to 43 by Week 13, Dr. Rice encouraged me to have an appointment with the Bone Marrow Team and see if there were any matches for me, so I did that about 4 months after my ATG. The doctor in the BMT unit said that BMT would only be considered for me after a second round of ATG, if needed, didn't work. At this point, 20 months after ATG, I feel good with my HGB at 10, WBC usually a little below 3, and platelets in the 20's or 30's. Dr. Rice has agreed that I can life comfortably and safely the way I am. As it turned out, there were very few matches for me, and I personally do not want to consider a BMT unless it is a matter of life or death.

[Karenish]

I am with Donna - at 6 months i was still dependent on transfusions, doc decided to do another bone marrow aspiration to see what state it was in, he detected a very slight improvement so said he would prefer to wait and see. I have no match on the bone marrow register and I was 50 (now 53). All of a sudden in month 10 things started to go up..and up....and to date all counts normal except platelets which hover in the 60's. - we all respond at different rates, they dont know enough about this disease to say something is definitely black or white, its all grey. I would if I was you wait much longer than the short time you have already - get another aspiration at 6 months and see if there is any improvement. Yes of course with the transfusions your ferritin level goes high, but there is no research out there to say what effect if anything this has on older patients, only on childrens organs. I would if relapsed go down the ATG route again before BMT - not so much for the easier ride but that it is not so drastic. Good luck, keep us in the loop

[Heather8773]

Thank you all so much for the responses! Means a lot to us! It helps us to refocus on getting a plan B , to see if there even is a plan B (his sister was already ruled out) list the pros/cons and remember how different each persons response is.
His Dr called us back and said his CsA level is low and to take more. So maybe that's a good sign that he hasn't needed platelets in 5 wks w the level he's taking and taking more will help his counts?
This is all very confusing about wich path to take. Thank y'all for the responses and support

[Heather8773]

Ps when I told a friend about what happened he asked "have you run this by the online support group you told me about!?" I thought that was cool I didn't realize exactly how much this site has ment until that moment y'all have taught us so much!

[KMac]

Hi Heather,

I am 14 months post-ATG for SAA. Like many others who responded to your post (and also FINALLY responded to the ATG, thankfully), I was a very slow responder. And 8 weeks post-ATG I was not as far along as your husband currently is even.

My last platelet transfusion was 8 weeks post-ATG, my last RBC transfusion was over 3 months post-ATG. Then my counts basically hovered at a low level, especially my red blood, for another 3 months. Only at month 7 did they start rising significantly, and they really kicked in around month 10.

My counts still bounce around, and have fallen a bit in recent months, which of course is stressful. But I am in good hands at my hospital and usually in good spirits. My counts are high enough that I have energy. I climb mountains and ski with my kids, and feel so lucky about how far I have progressed in a year.

So in short, yes, I sure think your husband should wait on a BMT. My doctor, for example, was waiting until about the 6 month mark post-ATG with me. That said, it wouldn't hurt to start checking the donor registry just in case.

One of my doctors told me fighting this would be a 'glacial process'. I now know what she meant! On that note, I found something yesterday that all of us fighting SAA on the 'slow track' can find inspiration from. Here's a blog from a young lady who, finally, 7 years post-ATG was declared in full remission by her doctor. She decided to celebrate by hiking across America (the whole way, Atlantic to Pacific) to raise awareness for bone marrow failure disorders. She must have her energy back!

http://our-hike.blogspot.com/p/my-aplastic-anemia.html

Although this is a strange and frightening disease, we have great hope.

[Neil Cuadra]

Originally Posted by KMac

On that note, I found something yesterday that all of us fighting SAA on the 'slow track' can find inspiration from. Here's a blog from a young lady who, finally, 7 years post-ATG was declared in full remission by her doctor. She decided to celebrate by hiking across America (the whole way, Atlantic to Pacific) to raise awareness for bone marrow failure disorders. She must have her energy back!

http://our-hike.blogspot.com/p/my-aplastic-anemia.html

That inspiring hike was a news story here at Marrowforums! See Mother-Daughter Hike Raises Funds and Awareness and our Photo Gallery of the conclusion of Robin and Patty's hike!

[EmilyS]

Heather,
I agree With the others that it is too soon to know for certain if the ATG has worked. I have had two rounds of ATG. After both I saw some results after 4 weeks, but the doctor said that was rare and that it would take at least 3 months to know for sure. After the first round, my counts never responded that well, so 6 months later I had another round. Eventually all my counts returned to normal. I don't think it's ever too early to start the search for a match or to start 'thinking' about a BMT. One big issue is that every blood product transfusion and treatment (such as gcsf) can reduce the success possibility of a transplant. That may be what your doctor is thinking, since your husband is still requiring transfusions. If you don't trust the path your doctor is suggesting, don't hesitate to get a second opinion. From reading this forum I can tell that most doctors have a different idea of how to treat this disease. And you need to find one you trust and feel comfortable with.

[MelanieW]

I agree that everyone's response is different. These were my counts at 8 weeks post ATG last year:
5/8/2012 HGB: 8.7 HCT: 24.4% WBC: 4.1 PLT: 28,000
Now here they are last week
5/29/2013 HGB: 8.5 HCT: 24.8% WBC 3.5 PLT: 35,000

Counts have been the same for one whole year. However, I am TX-independent since April 2012. I have two doctors - one local and one at DFCI - and they are content - neither one has mentioned any further treatment which is fine with me!!

Has anyone else had similar partial response at 1+ year and what happened after that?