Trying to decide on BMT or 2nd ATG

[bochs4]

Hello i have been following along on most of your experiences on here. Your stories have educated me more than any other webpage about AA. Thank you for sharing! This is my first post. My brother was diagnosed w/SAA 12/10 had Horse ATG 12/10. He is close to day 60 post ATG. He had a very serious battle with an infection in his arm but recovered. His last CBC w-2.2 neutro's-1400 p-9 and h-8.1. A week ago his whites were at 8.0 with 70% neutro's so they stopped his shots. He gets transfusions of platelets every 3 days and hem. once a week. They have apparently found a perfect non-sibling match but it has not been confirmed that they have contacted him and he is willing. His doctor told him yesterday that he does not know yet what he would recommend for the next step. The next 30 days will tell us more. At this time he has decided that if the donor is available he will go with the BMT. He is not in favor of another round of ATG. I was just wondering if anyone has experienced platlets and hem. taking longer to respond? And what you might do if you had to decide between BMT with a perfect non-sibling match or ATG. I appreciate your comments and good luck with your battle.

[Ryan Jay]

Hi boch,

The BMT or ATG question is not an easy one to answer, even for the most seasoned doctors. But if you want my non-expert opinion, I think it sounds a little too early.

My counts didn't really start to rebound until the middle of October, after having had ATG in early August. And I was bad! Platelets crashing down to "3" every couple of days, HGB at 4.1. Ugggh!

It may sound a little strange, but I've always thought of the decision to go to either BMT or ATG like counting cards at the blackjack table, with some factors calling for the BMT (A hit) and others ATG (Stay).

No response to ATG: Hit

Dangerous ANC: Hit

Being under 40: Hit

No matched sibling: Stay

Older than 50: Stay

A good doctor should go through all of these factors in order to come up with the best way to play the hand to beat the house (Aplastic Anemia).

Anyway, that's how my goofy mind works.

Good Luck!

[susansr]

I agree with Ryan that this decision to even consider a BMT at this time is way too soon. First off, 2 docs I saw both strongly stated that one needs at least 6 months from treatment to make a decision. And platelets are the last component to recover.

I had my 1st horse ATG a year ago and we are just now deciding what to do since my response to the ATG was minimal.

I do hope you don't rush into anything and give your brother's body some time.
Some folks have a delayed response and as in my case, that's why I was given an extra 6 months to wait and see. I am transfusion independent for platelets, but, my numbers never rose above 26,000.

I am kind of surprised your doctors are giving you this line of advice now.
Good luck, Susan

[bochs4]

Thanks Ryan and Susan, your input means alot. His first ATG was pretty hard on him. Susan the docs haven't even told him that they would do the BMT at this point. They have talked alot about the next 30 days is going to tell them more. He has a really great team of doctors. He has been telling them that he wants the bmt if it is available. One of the things that really bothers him is that he has no strength. He walks 100 yards and he has to sit down and rest. Was that a problem for you and did it get better? I appreciate your input Bill

[Ryan Jay]

Bill,

I was out of it. I could barely keep my head up when I was sitting at the table and trips to the bathroom were hour-long events due to my weakness.

It did get better gradually, but if that's his beef, a BMT can be even tougher because you get the ATG on top of all the other preparation treatment.

The effects should start to subside soon.

Ryan

[KaydeeRichardson]

Hey I'm Kaydee when I was 10 I was diagnosed with AA and PNH, May I ask which ATG they did first? I did Horse and now I'm in remission

[bochs4]

Hey Kaydee, They did horse atg on him. congrats on your remission.

[Lisa V]

Bill, I just want to add my voice to the others who say 2 months is too soon to make a decision. ATG can take several months to kick in, and progress may be excruciatingly slow after that. There's no point in going through another, possibly unnecessary procedure until you're sure it's not working. It took my husband nearly 3 months to see an initial response, and several years for his platelets to finally creep back up to normal range. As long as counts seem to be moving in the right direction more often than not, that's a successful outcome.

Ryan has made several good points-- first, that there are a number of factors (age, quality of available match, other health issues, etc.) to consider in making such a decision. Second, that if ATG was rough, a BMT is likely to be ten times as rough (especially with an unrelated donor, even a perfectly matched one). It is a BIG DEAL with a whole slew of potential complications and a long recovery period. Not something to be taken lightly, and certainly not something to be entered into as a way of avoiding ATG, since that plus chemotherapy are usually a part of the procedure.

I'm not trying to scare you or talk you or your brother out of going that route if circumstances seem to favor it, just hoping that you will use this time to get a realistic picture of some of the issues involved, so that if and when the time comes, Jeff and his doctor can make an informed decision together.

[bochs4]

I think i mave have mislead you a little. He has no intention of making a decision until at least after the 90 day mark. I really see what you are saying. Its really hard to say what his numbers will be in 30 days. He is just saying that if he has a good match and he hasnt responded from 1st ATG, he is going to have to go through 2nd ATG and his system is going to be wiped out again why not just go through the rest and have the possibility of being cured? If he does ATG again and at best goes into remission he may live great for 1,2,5,10,15,20 years but then relapse, he takes a chance at being past the 40 y/o mark and his donor not being available. I just pray that his numbers continue to get better and his 1st ATG treatment will work. His white and neutro counts responded great he was all the way up to 8 w/70% neutros but then dropped to 2.2 in 4 days after they stopped the neupogen. Hem and platelets havent really responded. Its great to see the responses he likes to hear all opinions and storys. thankyou again for your thoughts Bill

[bochs4]

In addition to my last post. He also understands that ATG buys time and time can mean a cure.

[Lisa V]

I see what you're saying, Bill. The age thing is a real Catch-22, particularly if you're right on the edge. There's nothing magical about the 40 year mark, but the younger you do it, the better. Also the fewer ATGs and transfusions you've had, the better. This makes it really hard to second guess whether to move forward right away when the odds are more in your favor, or wait and hope that you'll never have to. Bottom line, none of us knows what's going to happen, so you just have to look at statistics and weigh them against your own situation and hope for the best.

I'd still be inclined to give it more than 3 months, but if he has shown no measurable increase in counts (without the help of Neupogen, Procrit or transfusions) by the 6 month mark, and if he has a 10/10 donor ready and willing, that would be a strong incentive to pursue transplant.

If, on the other hand, his counts start to creep up, I'd wait and see what happens. And if a good match is not available, a second ATG would be preferable to an incomplete match.

[bochs4]

We have been told it is a perfect 10/10. The doctor said it must be his long lost sibling.

[Gloria J]

Hi Bill,

I'd just like to chime in with the others on the 'watch and wait' theme. Although a 10/10 match sounds incredible!

My personal experience is remission after Horse ATG, but it took a good long while - close to 15 months. Low counts, mind-numbing fatigue, headaches, general malaise -we've all dealt with it, and I can certainly understand the desire to end it all with a BMT that would do the trick.

In this Forum, you'll read about many different experiences with ATG. Ultimately, it's your own (or, in this case your brother's) story, and your own decision.

Bravo to you for being such a support to your brother, and best wishes for better weeks ahead,

Gloria

[mscrzy1]

My ATG took place in 1996 before they knew about long tapers with cyclosporin, but even so, at the 100 day mark I had absolutely NO response to the ATG. In fact, my counts were worse. We were in a standstill as to what to do with me. They didn't even think about doing ATG again then. Or at least, I don't remember it even being on the table. I was on supportive care for a while and suddenly my counts just started to slowly improve. I had my ATG in March of 1996. I had my last blood transfusion in August of 1997. That is an entire year and 5 months after my ATG. I say that it's too early to think about a BMT. That's just my 2 cents. Stay hopeful!

[bochs4]

Thanks everyone for taking the time to reply. It means alot to me.

[bochs4]

Hi everyone, well we are approaching the 90 day post ATG and his last CBC was 2.7-w, 9.8-h and still getting platelets almost every time he goes in which is twice a week. Every since i first posted he gradually started to get better. He had about 10 good days of feeling good but the last 3 or 4 days he has been feeling pretty crappy and actually was vomiting for the first time this morning. They have scheduled a BMB for Thurs. Researching AA has become a part-time job for me but i dont know alot of what we should expect to hear if things are getting better. I mean i dont really know much about the biopsy. Could anyone tell me what they are looking for in the biopsy. From what i understand it is cellularity. I will probably be reading about it for the next 24 hours. I just assumed that since his white count is pretty good that he was getting better. The doctors seem content on the next step if the biopsy doesnt show them what they want to see. On monday his docs talked like they were reccomending a 2nd ATG. I just cant figure it out. Everyone that i have talked to including some of you on here say it is way to soon. All along the doctors say their biggest concern is white cells cause they cant be transfused and now they are pretty good but they are still thinking about the next step. So i guess i was just wondering if anyone could tell me more about the BMB and what would be good or bad. Thanks everyone BILL

[Neil Cuadra]

Bill,

You are correct that the bone marrow biopsy will be used to study cellularity (basically cell quantities). Cellularity, along with blood counts, is used to assess the severity of the disease.

Cellularity averages somewhere in the 40% to 60% range for a healthy 39-year-old so the question is how Jeff's cellularity compares. Newly diagnosed SAA patients (before treatment) can have cellularity of 20%, 15%, or even lower, so there's quite a difference.

The BMB is actually two tests: the bone marrow biopsy for studying cellularity and the quality of cells, and the bone marrow aspiration that extracts cells to be studied under the microscope to make sure there are no mutations.

Routine blood counts give you a good picture of how Jeff's recovery is progressing, especially if you look at the week-to-week and month-to-month trends, but the BMB/BMA results may give you confirmation that he's making a good recovery. Let's hope for that good news!