How long to wait for cyclosporine

[KimO]

It's now been about a month since Shauna relapsed. The docs had to wait a week of that to make sure we had a "trend" before restarting Cyclosporine. She's now been on it for about three weeks and the drop seems to have stabilized --- platelets dropping from 150 -- 92 -- 75 -- 47 before and then 44 -- 41 since. Hgb is holding steady in the 11 ish range but ANC is down to .6.

The doctor said Thursday that he was going to give her one more week before recommending we repeat ATG. I'd like opinions on whether it's too soon to declare the cyclo not working. She had only been it 2.5 weeks at that point. He did have to back her down to 200 mg 2x a day from 300 mg 2x a day because the trough value was too high.

Thoughts anyone?

[Lisa V]

It does sound as though it's slowing down, Kim. My feeling would be to keep in mind the possibility of another ATG, but not actually schedule it unless Shauna becomes transfusion dependent again. If she is able to stay above tx levels, I don't see the urgency to move forward, although if she continues to hover at very low levels, it would be something to consider.

On the other hand, it sounds like her ANC may be a bigger problem than txs. Has the doctor said anything about giving her Neupogen to try and raise it? If that worked, it could buy her some time to see if the cyclo alone will turn it around.

[Hopeful]

This is a very difficult decision because, as you know, 3 weeks is not enough time to see if Cyclosporine alone can turn things around. It is very encouraging that she will respond again to some form of IST because her platelets have stopped their precipitous drop.

You could approach this as if she were newly diagnosed with AA. In that case, if she remained MAA, you would watch-and-wait with Cyclosporine. If she became SAA or transfusion dependent, you would move to ATG.

SAA is defined as marrow less than 25% cellularity and 2 of the following:
* neutrophils less than .5
* platelets less than 20k
* absolute reticulocyte count less then 40

She clearly is not SAA right now. So, I would agree with LisaV that it seems early to jump to ATG and that a watch-and-wait approach with Cyclosporine is better. Especially, since she is young and a potential transplant candidate in the future, should she decide. Repeat ATG exposure implies more transfusions, which is not ideal for transplant candidates.

I wonder if neutrophils decline at the start of any IST therapy, Cyclosporine included? I remember mine bottoming before rising when beginning ATG.

Has she been able to stick-it-out at school throughout the Cyclosporine therapy?

[KimO]

Thank you Lisa and Hopeful for your informative replies. I agree that the ANC is probably the most worrisome thing at the moment. Classes are scheduled to start on Wednesday at UW but she went to school for over a year on cyclosporine after the first ATG treatment. It's not fun but it can be done. She can't, however, continue if she has to repeat the ATG. She'll have to withdraw from school and come home for treatment. She has two quarters left (UW is a 3-quarter per year system) so we can potentially get her treated during one quarter and she can still graduate this spring (assuming a positive response to ATG). I think the doctor thinks we are foolish to even try to consider school in her treatment plan, but killing a kid's dream doesn't do good things for them as a patient. When the patient is an adult it gets even more tricky. Our prayer is that the numbers start to turn around this week. If not, we'll pray for wisdom as to how to help her deal with this stupid disease without totally derailing her life.

[KimO]

Good news! Platelets are up this week from 41 to 54. ANC increased from .6 to .9. Hgb dropped from 10.9 to 10.0 but Hgb was the last thing to respond after her ATG. Cautiously opptomistic that maybe the cyclosporine is at least going to buy her the time she needs to finish school! It will be interesting to hear what the doctor thinks about these numbers when she sees him this week. He's out of town until Monday.

[Hopeful]

That's great news, Kim! A 13k jump in platelets in a week sounds like a pretty positive sign to me! Hope she continues to improve.

[Lisa V]

Keep fingers crossed! Sounds like a good sign to me too. A few more CBCs should make it more clear.

[KimO]

Numbers are in for this week. Platelets jumped from 54 to 79, Hgb remained at 10 and ANC is still relatively steady at .8. Hoping the doctor agrees with us now that we need to watch and wait.

[Ryan Jay]

Things are sounding much better, especially that platelet jump.

This disease can be so maddening at times. You'll see two lines jump up and a third line fall a little. I try not to let little number fluctuations get to me too much. Yesterday, my platelets fell from "29" to "28" from a week ago. I still got a little wound up. But then I looked at a lab from late August when they were at a "3" and I was still transfusion dependent.

Your situation earlier this fall seemed a little more distressing.

Keep fighting!!!!

[KimO]

It looks like "wait and see" is paying off. Platelets have climbed pretty quickly from a low of 41 to 173 this week (over a six-week period). That number is astounding to me as they haven't been that high in about a year. ANC has increased from .6 to 2.2. We're still waiting for Hgb to come around, it's been hanging at 9.5 - 9.7 for the last three weeks. That was the last line to respond after the ATG as well. We're so thankful and relieved that perhaps we can avoid ATG at this point. Thank you Lord!!

Hawaii Bill you were right that sometimes a relapse can be reversed by CsA alone!

[Ryan Jay]

I'm getting close to remission levels after 2 1/2 months.

Those look like really nice numbers. The hgb tends to lag a bit.

The key is the neutrophil count. If that's above 1,000, you're in good shape.

Keep up the good numbers!

Ryan

[Hawaii Bill]

Hi KimO:

I'm so glad to hear that you got your counts back with the CsA alone! It was Dr Paquette of UCLA that gave me this option and I will be forever grateful to him for saving me from another round of ATG (even though my experience with it was mild compared to many posts on this forum).

Aloha!!!

[dmscott65]

Congratulations to those of you who are responding so well. Dr is still very cautious, but pleased with my progress. HgB is improving and stable around 8.9-9.0. Platelets have climbed to 90. I'm excited about that!! Neutrophils were above 1400.
I have a question. What is CsA?

[Neil Cuadra]

Originally Posted by dmscott65

I have a question. What is CsA?

It means the immunosuppressant cyclosporine (brand name Sandimmune).