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Old Fri Mar 21, 2008, 11:20 AM
Jbsx19 Jbsx19 is offline
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Join Date: Jul 2007
Location: Florida
Posts: 29
Hi Trish,

Glad to hear you are being strong and researching. Contact AAMDS also and have a package sent to you which contains 1st rate booklets to explain everything about the disease and treatment options. My case was very swift indeed, I was diagnosed May 9th,2003(healthy the 8th and 0 platelets and white cells ,Hemoglobin like 5 on the 9th in the ER)BMB that day.They kept me in ICU to support me until all the contacts and testing on my sister could be done. She is 1200 miles away ,but a complete match.(I have 1 sibling with a 25% chance of matching..crazy,huh?)Anyway, flew up Mon,had BMB Tues.They admitted me right then..I had to decide between BMT and ATG/CYcl clinical trial. They did not have a trial at that time that went right to transplant at NIH. I had the best Dr on each side of the fence as to what treatment to do.They don't like to transplant after 40. In order to stay at NIH, I opted for the ATG and then they would do the transplant there if the ATG didnt work.I started ATG on May24th (4 day infusion)..no really bad side effects. A little flu like,chills,etc. I had a nose bleed that wouldnt quit that was the worst. Had to go to the ENT there to cortorize it. You have to understand that at NIH, that's what these nurses and NP's do is bone marrow.I think they may know as much as the DR's there. Honestly, it's a different medical world than your local.I had a nurse,literally, by my side all 4 hours of the ATG for 4 days.The nursing is 1 on 1. You get your own nurse for a 12 hr shift.I was assigned a whole team to take care of me and answer all questions(a nutritionist,therapist,activities(like crafts),massage,etc..etc...)I developed some serum sickness that even baffled Dr. Young,my hands and feet peeled,my white cells started to come up within a few days, i still couldnt hold onto to platelets at all(had to get HLA matched platelets)and only need very little red cells. I had a central line in my neck the whole time I was there,once I decided to do the ATG.I could shower everyday,walk around,at NIH they prefer you to dress ,do laundry,go to the cafeteria(with a mask if needed), no laying around in your PJ's.I responded very quickly and by June 9th my ANC was 900 (enough to go home). They infused HLA platelets the morning of the 10th and my husband picked me up and we drove home to FL,with a suitcase of drugs. Yes, I stayed up there for a month by myself, I needed my husband home to work and take care of the kids and house. My platelets were 28K on my ride home (they called to tell me). I got home, was tired,weak.and alot of bone pain Cyclosporin and Mycophenolate are immunosuppresives (along the same idea of chemo but not)I did Cyclo for 6 mos and MMF for 18 mos.Not fun side effects, but not hateful.Neupogin shots every 2 or 3 days(my husband gave me) and Pantemedine treatments once a month(breathing in of the drug to protect lungs from fungal pneumonia)Blood work every 2-3 days for a while. Back to NIH at 3,6,9,12 and 18 months. I went into full remission and never needed blood products again one I got home.It's been 5 years and my platelets are at 302K last week.I did enter another trial after to see if they could harvest my own stem cells(CD34) aftr remission, but I cannot> I had 0 CD34 cells to harvest after a week of Neupogin shots. They can't explain it at NIH,either. Sometimes you just have to accept what is and not look for an explanation.

When you call NIH, talk to OLga at NHLBI..I will be going up for my BMB on May 6th.I have her direct number if you need it. I will be glad to help you in anyway I can.My point in all of this, is that if you are unfortunately lucky enough to be diagnosed with something that will get you into NIH, why wouldn't you take that opportunity and be treated by the place who does this., and help them gather information for research at the same time.This is what they do there...treat bone marrow disease...not fit you into some oncology unit or lump you with cancer patients. A whole different world, honest!!

I can also deeply feel your pain with this being your child..it was me that was sick..not my child..That's a whole different ballgame when you are a parent.My 27yoa niece is losing her battle with a brain tumor,as we speak...I really do understand.

Email me and I will gladly give you my number if you need to talk.

Be strong..and hope I helped in some small way.

Judi...Jbsx19@aol.com
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Judi 46yoa VSAA diagnosed May 2003 ATG/Cyclosporine/mycophenolate treatment complete remission ukn cause. I believe caused by stress while on an antibiotic or an allergic reaction to the antibiotic. I also had ITP about 20 years prior.
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