ATG/Cyclosporine

[trishgen2001]

My daughter had her 1st round of ATG about 4 weeks ago. She's currently taking a total of 350mg daily of cyclosporine. Her first blood test after the ATG seemed very promising-plat up to 30 from 10 when we left the hospital and ANC's up to 1700 from 400 and that was 3 days after treatment. Last week, her WBC was actually in the normal range (5.4), with plat @ 20 & RBC @ 2.93, Hemoglobin 9.5. This week I feel like we are starting all over again. Her WBC is down to 2.4, RBC is 2.65, Hemo 8.5, plat @ 24. Her ANC's have dropped back down to 600 from 1200 last week. If anyone who has gone through this treatment could tell me a bit about their response (how soon, how much) and experiences, I'd really appreciate the input. Also, if anyone has any suggestions on how to manage the extra hair growth caused by the cyclosporine. She is wanting laser hair removal-her Dr. is looking into whether this is actually an option for her or not. She's 16 and really getting bummed out about the changes in her appearance. This is very hard as she has been such a trooper through all of the tests, through the ATG treatment, and all the changes this stupid AA has handed her. Thankfully, we are off the prednisone (there's nothing like a teenager on steroids!!) as of last week, and I can see some of the "puffiness" going away already. Anyway, any response is appreciated!

[MaryAlisha]

I'm the caretaker of my 14 y.o. sister who was diagnosed in Oct 2007 w/ Severe Aplastic Anemia. The ATG didn't work for her. We are still taking cyclosporine. The hair growth I think increased some on her arms but not enough for me to even notice. Her hair is actually falling out from one of the meds. I was thinking it might be the cyclosporine. I may be wrong. It's not thin enough for anyone else to notice but it comes out alot while bathing. I would love to stay in touch with you since I don't know anyone else with a child w/ AA especially a teenage girl.

Is your daughter still going to school? My sister is homebound and this is the one thing that really gets her down.

We are super lucky as we heard last week that we have 4 potential bone marrow donors and should get a transplant sometime this summer. Are they looking for a match for your daughter?

Sorry to ask so many questions!

[MaryAlisha]

I wanted to share with you two meds that are really helping us space out her blood transfusions.

She is on Aranesp given 1 shot per week to help with red blood cell production. It didn't make her levels go very high but helped space out transfusions. It has helped us only have 4 red blood transfusions since she came to live with me Dec. 21, 2007.

We haven't had any platelets this whole time.

I was giving her two shots of Leukine for white blood cell production daily for the past 3mths. It's really helped. Her white blood cells increased immediately. They have moved these shots to every other day now.

[trishgen2001]

MaryAlisha,
Thank-you for your response. I would love to correspond with you. It will be so nice to have someone who understands what we are going through, and they are so close in age. I am so happy to hear that you have found a donor and I wish you all the best with it. Our plan is to (if this round of ATG) don't work, is to give her another round of the ATG/Cyclosporine treatment, if there is no response in the next few months. If we have to do that, we'll begin looking for a donor at that time. This is a very scary time for us. I find myself living for the next CBC results and praying for a miracle every week! Jessica is doing homebound as well. It was a couple of weeks after the ATG before she felt like doing anything, and by then school was almost out for the year, they only have a few more weeks to go. She's just going to finish up this year with homebound. She did join her French class for an outing earlier in the week and seemed to enjoy that. She always seems to perk up a lot when her friends stop by or she has plans to go do something with them. The whole social thing is so important for them at this age. We have only had to have 2 blood transfusions since this all started. Jess seems to handle the low hemoglobin very well, they are always amazed that she is still functioning with her low counts. If you're sister would like, and Jess agrees, maybe they could exchange email addresses? I think it would be good for them to have someone going through the same thing to talk to. Jess doesn't really talk about it all that much to us. We don't push, just try to stay open when she does. Her skin and hair both are very dry, i guess due to the cyclosporine, she noticed some hair loss, but not much at first and hasn't said anything else about it in a while.

[MaryAlisha]

Trish,
That would be great. I talk w/ Krisitiana about it too. She moved here after diagnosis so she doesn't know any girls here yet. I hope she will attend school sometime next year. I know how living week to week is. I'll post more later b/c I'm so exhausted from track practice for my 2 girls and then a meeting afterwards for the parents.

Nice to meet ya!

MaryAlisha

[trishgen2001]

MaryAlisha,
Sounds like you have your hands full!! How old are your girls? It's really hard to divide your time between all the things that need to be done! Jess had to have a transfusion this week, it only took an afternoon, but it feels like it put us way behind for everything else. But, my anal self is learning that everything no longer needs to be done right now and what she needs totally comes first! How is Kristiana doing with her homebound? I'm having a very hard time keeping Jess focused on her school work, she just basically refuses to worry about it, and with all this I really don't have the heart to nag her! The days she feels good and wants to go & do things, I say go,have fun. She's actually becoming pretty "spoiled" but that's something we'll deal with we know she's getting better! My e-mail is trishgen2001@yahoo.com if you would like to e-mail. I told Jess about meeting you here and about Kristiana she said she would like to e-mail her.Her Dr. hasn't mentioned using the Arenesp to us or the Leukine.She did mention neuprogen shots (maybe this is the same thing?, still learning all these terms) if her ANC's stayed low. Is this anything you all have used?

[MaryAlisha]

Trish,

Thanks for the email. I’ll let Kristiana know also and give her the email address. I think that maybe another type of shot they use. Those two are working for us. Krisitana is really focused on her work but she has no social life so that might be why. She does all her work pretty quickly in the week. Tomorrow is the last day the teachers are coming. We’ll have new ones next year since she is going to high school. I hope they are as good as these 2 were. They cared for her so much. I’m very anal too so we should get along. I do try to keep Krisitana on a routine as I do the other girls so it will be fair. She is very good natured, the best of all the kids, so I’m lucky. I have a 12 and 6 y.o. daughters who are both extremely spoiled. LOL My email is margarita@yahoo.com.

Another hard thing this summer is they aren't allowed to swim in pools or any fun stuff like that. Did you know this? The germs are so high in places like that and waterparks.

Do you have other kids?

I was supposed to go back to college but I have decided to put it aside for right now. I'm trying to find some online classes to do. My kids need to come first and that would be stretching it too thin. I choose to take on this situation not them.

I'll email you later!