ATG/Cyclo Acceptable Response?

[edithr]

Yesterday, Eric's doctor said that a response is defined as:

Hemoglobin > 10
Platelets > 100,000
ANC > 1000

And they wouldn't do anything more, maybe because he is transfusion free also?

So he can live forever like that? I was under the impression his values would have to be in the normal range at least.

[Marlene]

Yes, it's very confusing. It makes it difficult to really get your hands around the efficacy of treatments because they don't always explain the terms by which they measure success or failure of a treatment.

I don't know about most people, but when you're first learning about this disease and the treatment options, I have a bit of selective hearing. Either they're not clear, or I hear want I want to hear. It's probably a combination of things. But most doctors do not fully explain the variations in outcomes. Partial response (with/without the need for transfusions), full response (with meds/without meds), complete remission (with meds/without meds).

And yes, you can live with those counts. Not ideal but livable. I'm a bit surprised that the ANC is so low and platelets so high for that criteria. Especially since platelets can be really stubborn in coming back.

[Hopeful]

Different doctors and different reports will use different definitions for responses. This is my favorite for SAA.

A CR is:
* off cyclosporine or equiv
* transfusion independence
* normocellular marrow
* normal counts for age/gender

A PR is:
* transfusion independence
* HGB increased by >3 or platelets increased by >20k (if previously below 20k)
* not CR

Hematological improvement is:
* may still be transfusion dependent but some significant improvement in counts for at least one cell line.

Non-responders have no change or decrease in blood counts.

I'm not sure what your son's initial values were, but if he is now transfusion independent, he has had some kind of response and that is good! It takes time for the marrow to recover. Hopefully, your son's counts will continue their upward trend

[Lisa V]

Like most people, I initially thought the 70-80% response rate cited for ATG meant full recovery. I soon found out it doesn't mean that. The impression I've gotten from subsequent reading was that anything above transfusion level qualifies as a response. What your son's doctor is telling you is somewhat higher than that, Edith.

A couple of things I've learned, however, are that a) the human body has a remarkable capacity to adjust itself and compensate for lower than normal counts, and b) that counts can continue to improve for years after ATG treatment. Ken's over 5 years out from his second round, and it's only been in the last 6 months that his Plts have been in the normal range. His WBCs still haven't quite gotten there, but they're getting close. Hgb has been good on its own for the last 3 years or so, but before that he was using Procrit to keep it there. It would be a mistake to look at any set of labs at a given point in time and assume that that's the way it's going to be from now on.

BTW, has anyone come across any statistics for complete remission after ATG? I don't think I've ever seen any figures for that, just "response".

[edithr]

Originally Posted by Marlene

they don't always explain the terms by which they measure success or failure of a treatment.

when you're first learning about this disease and the treatment options, I have a bit of selective hearing. Either they're not clear, or I hear want I want to hear.

OMG Marlene! I know EXACTLY what you mean! I thought it was just me being 50, and that I didn't remember what they said. Now I think they change what they say, or they clarify themselves as we go along.

[edithr]

Originally Posted by Lisa V

Like most people, I initially thought the 70-80% response rate cited for ATG meant full recovery. I soon found out it doesn't mean that.

Ha - I thought the SAME thing!

Originally Posted by Lisa V

A couple of things I've learned, however, are that a) the human body has a remarkable capacity to adjust itself and compensate for lower than normal counts, and b) that counts can continue to improve for years after ATG treatment. Ken's over 5 years out from his second round, and it's only been in the last 6 months that his Plts have been in the normal range. His WBCs still haven't quite gotten there, but they're getting close. Hgb has been good on its own for the last 3 years or so, but before that he was using Procrit to keep it there. It would be a mistake to look at any set of labs at a given point in time and assume that that's the way it's going to be from now on.

BTW, has anyone come across any statistics for complete remission after ATG? I don't think I've ever seen any figures for that, just "response".

I agree the body adapts with what it has. So how did Ken feel during all of this?

Originally Posted by Hopeful

Different doctors and different reports will use different definitions for responses. This is my favorite for SAA.

A CR is:
* off cyclosporine or equiv
* transfusion independence
* normocellular marrow
* normal counts for age/gender

A PR is:
* transfusion independence
* HGB increased by >3 or platelets increased by >20k (if previously below 20k)
* not CR

Hematological improvement is:
* may still be transfusion dependent but some significant improvement in counts for at least one cell line.

Non-responders have no change or decrease in blood counts.

I'm not sure what your son's initial values were, but if he is now transfusion independent, he has had some kind of response and that is good! It takes time for the marrow to recover. Hopefully, your son's counts will continue their upward trend

Hopeful, this is where I get really confused. His initial values were:

wbc 0.7
rbc 9.0
neuts < 500
Platelets 38,000

They did the bone marrow biopsy and it was < 20% cellularity, so they classified him as severe. They did not do ATG for about 5 weeks, and in that time his counts rose to generally:

wbc 2.0
rbc 9.0
neuts 800
platelets 80,000

They did another BMB just before the ATG, and it was "slightly less" than before. His counts are just above those numbers now, but it is too soon for an ATG response. His only transfusion was just before the initial BMB.

So why is he still classified as severe? It seems to be based solely on his BMB.



Lisa, I'm going to the conference Saturday, I will ask your question about complete remissions stats. I'm a math nerd and love statistics.

[Lisa V]

Originally Posted by edithr

I agree the body adapts with what it has. So how did Ken feel during all of this?

That's the thing, Edith, he felt fine through all of it. When he was first diagnosed his Hgb was 6.4 but he didn't even feel tired. He's an active guy (we have a plant nursery/farm, so lots of physical labor), and it hadn't slowed him down at all. The only reason we even caught it is because he started having retinal hemorrhaging which was causing blurred vision. We went into the ER for that, and they discovered his Plts were only 8k too. He'd been bruising a lot, but since he was building a rock wall he didn't think anything of it. The ER doctor couldn't believe he was even walking around with counts like that, but when I talked to the hem/onc later, he said that it had probably been developing over the course of several months to a year, and that that subtle decline had allowed his body to adjust somewhat, whereas if his Hgb had dropped that low all of a sudden, he probably wouldn't be able to stand up!

The only thing that made him feel sick were the side effects from the meds (plus getting C. diff. in the hospital).

[edithr]

Lisa, I see in your sig line that Ken is still on cyclosporine. By "still" - how long, exactly, has he been on it? And what dosage or dosage/weight? How often does he go for blood work? Does it put a stress on his kidneys? It seems to be stressing Eric's, he drinks at least 64 oz a day but the docs keep pushing for more, and now that it's hot out even more!

[Lisa V]

Originally Posted by edithr

Lisa, I see in your sig line that Ken is still on cyclosporine. By "still" - how long, exactly, has he been on it? And what dosage or dosage/weight? How often does he go for blood work? Does it put a stress on his kidneys? It seems to be stressing Eric's, he drinks at least 64 oz a day but the docs keep pushing for more, and now that it's hot out even more!

This should explain most of it, Edith: http://forums.marrowforums.org/showthread.php?t=1995

He has to drink lots of water too. It was hard for him at first, but he's gotten used to it, and carries a bottle of water with him wherever he goes. It's a nuisance, but water is cheap and readily available, and it sure beats the alternatives!

He was initially given 900 mgs/day following his first ATG, but that proved to be way too much (he weighs @ 160 lbs.). We've tinkered with it several times over the years, and he's now down to 150 mg/day. Possibly not a therapeutic dose, but that's all his kidneys and BP can tolerate. Maybe he doesn't really need it at this point, but based on our previous experience with relapse, we don't want to make any sudden moves. I've read that up to 30% of patients have to stay on cyclo indefinitely to maintain remission, so I'm guessing he's one of them. Not ideal, but you do what you have to do.

[Hopeful]

Originally Posted by edithr

Hopeful, this is where I get really confused. His initial values were:

wbc 0.7
rbc 9.0
neuts < 500
Platelets 38,000

They did the bone marrow biopsy and it was < 20% cellularity, so they classified him as severe. They did not do ATG for about 5 weeks, and in that time his counts rose to generally:

wbc 2.0
rbc 9.0
neuts 800
platelets 80,000

They did another BMB just before the ATG, and it was "slightly less" than before. His counts are just above those numbers now, but it is too soon for an ATG response. His only transfusion was just before the initial BMB.

So why is he still classified as severe? It seems to be based solely on his BMB.

The criteria for severe aplastic anemia are two of the three in a hypocellular marrow:
* Absolute neutrophil count less than 500
* Platelets less than 20k
* Absolute reticulocyte count less than 60,000 /uL

It's interesting that his marrow had such a big recovery before they did the ATG. I agree, he seems to be more moderate than severe, based on the above criteria.

As an aside, I was told that my counts would improve before I saw an increase in my bone marrow cellularity. That proved true for me.