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  #26  
Old Sat Jul 20, 2013, 02:39 PM
curlygirl curlygirl is offline
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Hopeful, the doctors checked his Creatinine level yesterday and it's getting lower than it was on the ATG. It's down to 0.33. Also his urine is looking better. His bilirubin went up to 1.7 during the ATG and is trending downward; yesterday it was down to 0.8. So it looks like there was some hemolysis going on in the liver but it is resolving. So things are getting better. Thank you for helping me know what to ask at the appointment!

Last edited by curlygirl : Sat Jul 20, 2013 at 06:17 PM.
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  #27  
Old Mon Jul 22, 2013, 04:43 PM
Hopeful Hopeful is offline
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Hi curlygirl,

Glad things are getting better!

For my benefit...did I do the cyclosporine calculations incorrectly or is your son on a high dosage as part of his protocol?

Also, are his doctors checking his cyclosporine trough levels to avoid toxicity?
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50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #28  
Old Mon Jul 22, 2013, 08:03 PM
curlygirl curlygirl is offline
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Quote:
Originally Posted by Hopeful View Post
Hi curlygirl,

Glad things are getting better!

For my benefit...did I do the cyclosporine calculations incorrectly or is your son on a high dosage as part of his protocol?

Also, are his doctors checking his cyclosporine trough levels to avoid toxicity?
Hopeful,

You calculated it correctly! They are using the dosage outlined by Dr. Neil Young in the article ssdavi71416 (Scott) linked to "How I treat acquired aplastic anemia" - "We initiate CsA on day 1 to a target trough level between 200 and 400 ng/mL, starting at a dose of 10 mg/kg per day (in children, 15 mg/kg per day).79" So our doctors started at that level and are then going to check and taper it each visit. We go back again tomorrow.

What I find fascinating about all this is that I notice that my son gets hemolytic anemia when his ANC drops below 200. That's only happened twice: once in May and again on ATG. Usually he is around 400. That actually sounds hopeful because secondary autoimmune hemolytic anemia tends to occur in lymphoproliferative diseases. That means his hemolytic anemia is probably secondary to another autoimmune disease, in this case the aplastic anemia. So it gives me hope that he will respond well to the immuno-suppressants.

Thank you for checking up on us! I will let you know what our cyclosporine end dose ends up being and if there are any effects on my son's kidneys.
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  #29  
Old Mon Jul 22, 2013, 11:36 PM
Hopeful Hopeful is offline
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It sounds like your son is in good hands It's interesting that pediatric patients start at a higher cyclosporine dosage than adults!
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50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #30  
Old Wed Aug 7, 2013, 09:59 AM
curlygirl curlygirl is offline
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Hopeful (et al.),

I wanted to follow up on the Cyclosporine treatment, since you were helping me with it. My son stayed in the 260ish level for the last two weeks. Yesterday his level shot up above 400 so they are lowering the dose to 1 ml two times a day.

I really wanted to thank you for warning me about the WBC count and the prednisone. He weaned off the prednisone a few days ago and his WBC counts dropped from 6000-7000 back down to 2800. Oddly his ANC went UP with the WBC drop, because the 6000-7000 was 90-95% lymphocytes, which was higher than he had even going into ATG. So I think it was the prednisone bumping up the count. I think they were true white blood cells but not the type we wanted :-p So thank you for warning me. I didn't feel at all upset when I saw the 2.8 number because you had warned me to expect it.

His reticulocyte percent is above 1% though, which I'm taking as a good sign! It was sitting at 0.4-0.6% prior to ATG.

Thanks and Take Care!
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  #31  
Old Fri Aug 9, 2013, 09:20 AM
Sarah H Sarah H is offline
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Originally Posted by curlygirl View Post
Thank you, Neil! My doctors have decided that it is Aplatic Anemia and have recommended Cyclosporine and ATG. My son also tested slightly positive on a PNH test. The doctors were ready to start but then my son's numbers jumped into the 700s, so we put a hold on it thinking it may increase (as opposed to decrease). It was so sad when we went back in and found out he went from 780 into the 300s in three short days. My son was so excited that everyone else was excited (even the doctors) that he was getting better. Except for the first night in the hospital it was the only time he started to cry. He did seem under the weather again in the days prior to his ANC collapse and had the dark circles under his eyes again.

We did go to Hopkins where we got my older son tested to see if he was a match for a BMT (our hospital does not perform BMTs). When he wasn't, Hopkins talked about their High-dose Cyclophosphamide treatment. After looking into it my husband and I decided that we'd rather stick with the Cyclosporine/ATG treatment. Also, my son really likes his doctors and nurses currently.

Thank you for the response! It is great to have input and it makes me calmer to have people to trade ideas with. Please take care.
Their comfort with their medical staff is extremely important. My daughter was diagnosed with SAA March this year and had BMT April as her brother my 3 year old son was great match.
I have asked doctors and nurses not to mention ideas of getting better or going home or similar around 8 year old as they take everything on and get sad when it doesn't happen. They feel personally responsible for getting sick again or not getting better. They feel like it's their fault everyone is sad and stressed and if only they could do it right, they can get better and it will all go away. Which it won't of course.
We say 'when' or 'we hope' or 'let's just do what we need to do and just think about that'.
Lots of things about treatment are different in Australia, like there is only 1 hospital to get treatment in the whole of north east Australia! but taking care of a child is the same everywhere. They have to be helped to feel it's not their fault and no one is put out by them or they can't wish for things to change. They just need to focus on drinking their water, taking their meds, eating without being too fussy, telling the truth about how they feel, resting when they're tired and keeping busy when they feel well...those are things they can control.
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  #32  
Old Tue Sep 24, 2013, 05:40 PM
curlygirl curlygirl is offline
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Hello, everyone! I haven't posted on my own thread for a while but wanted to when things started looking up! My son hasn't needed a platelet transfusion since 29 August. They've been above 30 for three weeks. For the last two weeks his reticulocyte % was in the 3s and today was almost 5%. It's been two weeks since his last blood transfusion and his hemoglobin is still above 8. He had a little metamyelocyte in his white blood cells, too. He also had nucleated red blood cells in his blood back in mid-August. So there appears to be a good left shift in his cells (http://www.pathologystudent.com/?p=318). His RDW, which sat at in the 12s for most of his illness, shot up to 17 last week and 19 this week, which, thanks to Kevin (KMac), I also read can be a sign of improvement. So things are on the up and up!

His ANC continues to swing wildly. It's gone from 400 to 800 to 1300 to 650 to 900, all over the last three weeks. His neutrophils are definitely trying to make a comeback, though. Twice they've hit above 40%, which is higher than when he was diagnosed.

I'll make sure to post whether things go up or down. I of course hope they continue to go up, up, up! Thanks for everything everyone's taught me on the board and for the hope you've given to me and my family!
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  #33  
Old Tue Sep 24, 2013, 08:23 PM
Chirley Chirley is offline
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All sounds very positive. I love reading about metamyelocytes and left shifts etc.

Did you think that you would even know those terms let alone what they mean, 5 years ago?

It's all a learning experience.
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  #34  
Old Wed Sep 25, 2013, 09:54 AM
curlygirl curlygirl is offline
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Chirley,

I wouldn't have even thought 6 months ago that Aplastic Anemia even existed! I'm a research at heart and by profession, as I told my boss at work, this would all be a really interesting academic exercise if it wasn't real life. I'd rather not be reading it in real life but it's better to be as informed as possible. Thank you for responding!
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  #35  
Old Sat Nov 23, 2013, 11:53 PM
curlygirl curlygirl is offline
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Hello, all! As a short update, my son hasn't needed a platelet transfusion since late Aug and a blood transfusion since early Sept. His white blood cells haven't really gone up, and his hemoglobin was slowly declining, but now has been hanging out at 7.6 for the last 6 weeks. Wish it was more (and going up!) since you don't feel good when your hemoglobin is 7.6 but it's better than being below transfusion level! While I was reading about the anniversary of JFK's assassination, I happened to read about his "blood disorder", which now has a name (Addison's disease), so I was telling my son how one of our great Presidents had an autoimmune blood disorder as a child that made him very sick, but he grew up and became President of the US. That made him pretty happy, thinking that he could be President one day :-). Happy Thanksgiving!
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  #36  
Old Thu Nov 28, 2013, 02:21 AM
Heather8773 Heather8773 is offline
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Awe I love that story you told your son!
#heartwarming
God bless!
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Heather, wife of Ronald age 31; dx PNH 2012; Dx VSAA 2013; previously on eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets.
Now -pentam,vorconizole,valtrex, valcyte, actigall, multivitamin, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
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  #37  
Old Thu Dec 18, 2014, 05:08 PM
curlygirl curlygirl is offline
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Hello! I realize I post all over the place but I last posted on my beginning thread in Nov 2013. It's been 17 months since ATG and this week my son's numbers all hit low normal for the first time. WBCs have been normal for a while but it took longer for blood and platelets to catch up:

WBC = 5.9
Hemoglobin = 13.1
Platelets = 152

His platelets still swing wildly, up to 40k by appointment. And he still gets marrow growth "spurts". He'd have a jump in numbers every 3 to 4 months, then stay stable for a while or start to trend slightly down, then jump up higher. We could tell last week that his hemoglobin was probably higher because he had more energy consistently than he had in a long time.

He's still on 50 mg cyclosporine each morning and evening.

We went to get our Christmas tree last weekend and my husband took us to Home Depot and I asked why we were getting it there and not our normal place. He replied it was cheaper and that we got it there last year and I just didn't come (as in he was annoyed that I didn't come.) So I looked at the kids and actually said I couldn't remember why my younger son and I didn't go get the tree last year. Then a few minutes later I remembered that it was because my son had been in the hospital at the beginning of last December with his temporary relapse (in conjunction with a respiratory infection). So while I still usually have anxiety it was the first time that we both actually forgot about it.

Last edited by curlygirl : Fri Dec 19, 2014 at 03:35 PM.
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  #38  
Old Fri Dec 19, 2014, 12:47 AM
Hopeful Hopeful is offline
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Hi curlygirl,

I am happy to read that your son is doing so well! Have a wonderful Christmas
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50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #39  
Old Fri Dec 19, 2014, 02:31 AM
KMac KMac is offline
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Hi Curlygirl,

So glad to hear about your son's improvement! His counts really look great! My recovery has been slow and sporadic, but good, so much like you describe with your son.

Some of the nurses at my hospital have anecdotally observed that patients who get better slowly, actually seem to get better more thoroughly, and stay better. Not a scientific study on that, just an observation on their part, that I sure hope is correct and significant.

Merry Xmas!
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Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.
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  #40  
Old Mon Sep 7, 2015, 12:34 AM
curlygirl curlygirl is offline
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Hello, everyone! Thanks for following me so far! My son is starting to relapse. We dropped his dose of cyclosporine to 25 mg morning and evening and very quickly his platelets fell from 150k to 44k. They are now in the 30s. His Hemoglobin has fallen in the last 6 weeks from 12.7 to 11.0, and I'm sure is lower: he went back to school and has the light purple bruises across his legs. We've raised the dose to 150 mg of cyclosporine day and night (at this level his trough concentration is between 200-300) but the bruises are still there. Hoping for the best as we removed his port last November. His doctors and we were again disappointed - we were at the visit to actually take him off of cyclosporine completely - he had a tan from swimming all summer and looked fantastic. People still tell us how great he looks. I'm ready to go to BMT but his doctors and my husband want to try a 2nd dose of horse ATG and never go below 50 mg of cyclosporine day and night for the rest of his life. My son really wanted to go off the cyclosporine. HEveryone please think good thoughts that the cyclosporine will work - mainly because he had such a bad reaction to the ATG last time (hives, fevers, and then hypothermia) that I'd rather him not go through it again.
Thank you!

Last edited by curlygirl : Mon Sep 7, 2015 at 12:53 AM.
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  #41  
Old Mon Sep 7, 2015, 10:52 AM
Fana Fana is offline
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Hi curlygirl
I am so sorry to hear about your son's relapse.i can't imagine the pain you must be going throug.my son is one year post BMT this September he is also tapering his tacolimus so for so good.hope you also can make a good decision regarding his treatment.praying for your son.
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Fana,mother of asad age 8 diagnosed SAA 2014, trying to decide between ATG or BMT..decided on BMT and finally did it
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  #42  
Old Tue Sep 8, 2015, 12:32 AM
Hopeful Hopeful is offline
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Hi curlygirl,

I am so sorry to read of your son's relapse! Hopefully things will turn around on the higher dose of cyclosporine. I will keep him in my thoughts and prayers.
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50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #43  
Old Tue Sep 8, 2015, 05:28 PM
curlygirl curlygirl is offline
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Thank you, Fana & Hopeful!
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  #44  
Old Sun Mar 6, 2016, 04:31 AM
curlygirl curlygirl is offline
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Hello! It's been a few months since I updated and wanted to again.

1) My son got strep twice over New Year's. Really it was one time but Amoxicillin didn't cure it so we had to get a second dose of antibiotics of Augmentin. His numbers always take a big jump on Augmentin. The excitement was that WBC went from 3.5 (bad), to 10.1 (also bad, for different reasons), to 5.5 (good). Also, on Augmentin his platelets went to 119k - a new high after falling to 35k after trying to taper the cyclosporine. At the same time I feel that: 1) Between ear infections and strep his only big jumps have been after Augmentin, and 2) the entire purpose of my original post - where he had 8k platelets, then made 70k on his own, then fell to 6k, was when he was on Erythromycin after he started wheezing - makes me think he needs a long term antibiotic. Has anyone else's numbers improved on an antibiotic? His numbers stay the same on cyclosporine but don't "go" up. I'm starting to get thankful for when he gets an ear infection because I can expect the jump in his numbers. I wish someone would just try putting him on 3 weeks of an antibiotic just to see what would happen but I can't get his hematologist or pediatrician to try it. His hemoglobin got down to 9.4 but is now back up 10.1.

2) He has one heck of a wart on his foot from the long term cyclosporine (it came back immediately upon restarting full strength cyclosporine). It is huge. I tried the salylic acid for 6 months and have now moved on to Vicks VapoRub, which is helping. It starts to die but then he takes a bath and the wart regenerates amazingly huge with water. Really, it's like a gremlin, I wish I could post a picture. We have an appointment with a dermatologist on Thurs but most treatments are contraindicated on immunosuppresive drugs. Does anyone have any advice?

Thanks! I hope you're all doing well!

Last edited by curlygirl : Sun Mar 6, 2016 at 09:33 AM.
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  #45  
Old Tue Mar 8, 2016, 06:27 AM
Cheryl C Cheryl C is offline
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While on antibiotics my WCC will rise but this will be followed by a drop once the antibiotics are finished. I think this is typical.

I'm so sorry your little boy is suffering infections. It's hard enough for an adult but must be very difficult for kids. My thoughts and prayers are with you.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #46  
Old Mon Mar 14, 2016, 01:41 AM
Hopeful Hopeful is offline
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Originally Posted by curlygirl View Post
Hello! It's been a few months since I updated and wanted to again.

1) My son got strep twice over New Year's. Really it was one time but Amoxicillin didn't cure it so we had to get a second dose of antibiotics of Augmentin. His numbers always take a big jump on Augmentin. The excitement was that WBC went from 3.5 (bad), to 10.1 (also bad, for different reasons), to 5.5 (good). Also, on Augmentin his platelets went to 119k - a new high after falling to 35k after trying to taper the cyclosporine. At the same time I feel that: 1) Between ear infections and strep his only big jumps have been after Augmentin, and 2) the entire purpose of my original post - where he had 8k platelets, then made 70k on his own, then fell to 6k, was when he was on Erythromycin after he started wheezing - makes me think he needs a long term antibiotic. Has anyone else's numbers improved on an antibiotic? His numbers stay the same on cyclosporine but don't "go" up. I'm starting to get thankful for when he gets an ear infection because I can expect the jump in his numbers. I wish someone would just try putting him on 3 weeks of an antibiotic just to see what would happen but I can't get his hematologist or pediatrician to try it. His hemoglobin got down to 9.4 but is now back up 10.1.

2) He has one heck of a wart on his foot from the long term cyclosporine (it came back immediately upon restarting full strength cyclosporine). It is huge. I tried the salylic acid for 6 months and have now moved on to Vicks VapoRub, which is helping. It starts to die but then he takes a bath and the wart regenerates amazingly huge with water. Really, it's like a gremlin, I wish I could post a picture. We have an appointment with a dermatologist on Thurs but most treatments are contraindicated on immunosuppresive drugs. Does anyone have any advice?

Thanks! I hope you're all doing well!
Hi curlygirl,

I would definitely get the growth on his foot checked out right away. It could be that his body is trying to fight an infection, but because of the cyclosporine, it is not able to ward it off. However, maybe the antibiotics are helping his immune system fight the foot infection, but they are not given for long enough??? Just thinking out loud here...

I know that when my daughter had a skin infection, the dermatologist prescribed a month (!) of antibiotics to get rid of it, and it did take that long! So perhaps that is all your son needs to help his foot heal and his counts to recover??? It would be worth consulting with a dermatologist.

As another data point, when I've been on antibiotics for an infection, I never saw a rise in my counts.
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50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #47  
Old Thu Mar 17, 2016, 08:44 PM
curlygirl curlygirl is offline
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Thank you both very much! It was indeed a wart, just a very large one. We ended up trying to freeze it off. It doesn't look infected now but he does have a large blood blister where it was. I've been putting neosporin on it. He had another much smaller wart his finger and we froze that one off too. The finger isn't looking near as bad so at least we caught it early. It turns out that warts are a hazard of cyclosporine, who knew? I will keep a watch on it and take him back in if it looks infected or if it starts to hurt. Thanks, again!
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