New here and diagnosed

[amandana]

Hello my name is Amanda and I was diagnosed with SAA in February, I underwent high dose cyclophosphamide treatment, Its been a very rough road and still recovering, I am new here and hope to hear from you as well.

[Neil Cuadra]

Hi Amanda. I'm sorry to hear that you're having a rough time of it. You'll find other SAA patients here who likely understand what you're going though.

Have your doctors been good about explaining things to you and letting you participate in the treatment plan?

Would you mind telling us what age range you're in, just to give us more context?

[Brendan]

Hey Amanda! Welcome to Marrowforums.

[Karenish]

Originally Posted by amandana

Hello my name is Amanda and I was diagnosed with SAA in February, I underwent high dose cyclophosphamide treatment, Its been a very rough road and still recovering, I am new here and hope to hear from you as well.

I was diagnosed Jan 11 - got ATG rabbit Feb - nothing major has happened yet, although doc did 2nd bone marrow biopsy and said there is a slight improvement in cellular activity so we are on a wait and see stage.

Fab that you are recovering and welcome to the club that nobody wants to join really xx

[amandana]

Thank you for the welcomes, I am 26 years old, Yes I was lucky to have had the opportunity to be seen by Dr.Brodsky from John Hoopkins, he gave us the options available for treating, but mostly went into the High dose cy treatment and his breakthrough with it at Hoopkins, he said in my case and medical history he highly recommended that I went with that treatment as ATG is more likely to have relapses and ongoing treatment. When I was diagnosed my celluar level was very low under 25. My history includes Iron deficiency I was diagnosed with when I found out I was pregnant with my daughter. I was on iron pills up until I got diagnosed with AA, which when i got sick I thought it was my iron never imagined I have SAA. We ended up choosing the high dose treatment, my doctors have been really amazing, and supportive to this day. Currently I am sitll recovering my celluar levels aren't fully back to normal yet, the plat and white take the longest which is still incrasing, but it does play a role in my immunity and whether I get sick I've had about 3 transfussions now since being discharged in august due to a cold I was fighting and also my diabetes. One side affect of the high dose is that my pancrease got damaged, I was diagnosed with type 1 diabetes in July, I am on a pump, its been difficult to learn how to manage my sugars, which has also put an affect on my celluar level and blood counts.

[Marlene]

Glad to hear you are doing well. All those drugs are very hard on your system. Most think the cytoxan is the worst but many find the anti-biotics and anti-fungals are much harder on body. John was on them for about 4 months and they really messed him up. Many of the drug studies done on safety with anti-biotics and anti-fungals are usually short term studies, usually for 28 days. So they really don't know the side effect/adverse reactions with long term use at therapeutic doses. The good thing is that many issues resolve or improve once you are off all meds.

John's whites recovered first, then red cells and his platelets are still below normal.

[aprilgrape72]

Hi there Sweetie. My name is April. I too have Aplastic Anemia. It suck's BIG time. I never know what My platelets are going to do next. But it's good to have a good suport group. I'm new to this site too. Maybe we can keep in touch? My platelet's are 49;000, My RBC 9.6, and My WBC is2.5. My doc said it's time for a transfusion. YUCK! Anyway, please E-Mail Me. I would like to help You any way I can. aprilgrape72@yahoo.com is My address. I look foward to hearing fromyou. Always, April