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AA Aplastic anemia

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  #1  
Old Tue Mar 20, 2012, 09:40 AM
misscakes misscakes is offline
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Location: Savannah, Georgia
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Unhappy help?

had ATG the first week of january. it was the absolute worst experience of my life. had a heart attack-the Medical Emergency Team had to rush in to monitor me. had these horrible horrible headaches that left me sobbing for hours that often required multiple doses of morphine to allow me to sleep thru.
anywho, i know it can take up to 6 months to show improvement. but at this point i'm not sure i even know what improvement is! my doctor has never done ATG again and told me recently that he would never do it again. he cant answer any of my questions. we kept playing musical dosages with my cyclosphorine. first it was 300 a day. then my kidneys and galbladder stopped working so we cut it down to 250. then once i left the hospital they called and told me not to take it again for three days and then only take 100. then we moved it back up to 200. then two weeks ago we went back up to 300. then it started again with the horrible cramps, chest pains and return of the headaches. sooo...i stopped taking it. at my next doctor's appointment i told him i had stopped (i assumed he would be furious) but he just said "oh, ok. are you just not going to take it anymore?" i asked him if it was absolutely necessary and he said to be honest, he had no idea why i'm supposed to take it. that he had tried to look it up online and couldnt find any answers for me. he says he'll call a lady at emory in atlanta and get back to me but in the meantime just dont take it.
i see all the classifications of VSAA,SAA,MAA and i have no idea which one i am. and obviously my doctor is not familiar enough with any of it to help me out. right now i just feel exhausted all the time. i work 55+ hours a week and dont have energy for anything else. i'm beginning to feel like i'm wasting away. this past week i've just been on autopilot. my husband is worried about me. my bones hurt all the time.
i just dont see a light at the end of the tunnel anymore.
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Kimberly; AA patient; diagnosed 10/11; ATG 01/12 with cyclosporine
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  #2  
Old Tue Mar 20, 2012, 10:05 AM
Sally C Sally C is offline
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Hey Kimberly,
I am so sorry for what you have been through.
It sounds to me like you need to go to an AA specialist - Emory may be a good start although others may suggest somewhere else. AA/MDS are very complex diseases that even the specialists have a hard time dealing with.
I strongly suggest finding a hemotologist whose speciality is AA/MDS.
Best of luck to you.
God Bless,
Sally
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  #3  
Old Tue Mar 20, 2012, 10:27 AM
Marlene Marlene is offline
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Kimberly,

Find a new doctor today. Others who have experience with ATG will respond and will have suggestions for you. But you really need to be treated by a doctor with experience in treating AA.

The aches and pains are most likely a result of serum sickness from the ATG which can hit post ATG treatment. It is treated with steroids. Regarding the clyclo, it a pretty important component of the ATG treatment. If you cannot get to new doctor, your doctor should be consulting with Dr. Young at the National Institute of Health. At this point, it is time to find a new doc. Sounds like this one is leaving you high and dry.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Tue Mar 20, 2012, 12:33 PM
Neil Cuadra Neil Cuadra is offline
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Kimberly,

I suggest that you get an appointment for a consultation at the Mayo Clinic in Jacksonville, Florida, where Dr. Guillermo Ruiz-ArgŁelles and other physicians have experience treating aplastic anemia.

It's worth checking if your insurance already covers out-of-state treatment. If not, I think you should find out who to apply for pre-approval if you can show that you need an out-of-state specialist, so you'll know if it's possible and how the process works. But don't let it delay your getting a second opinion soon.
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Old Tue Mar 20, 2012, 12:51 PM
misscakes misscakes is offline
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thanks for all the responses

just feeling supported helps a lot. i just feel like i'm losing my marbles sometimes.

i went to emory to see dr. langston as requested by my doctor. they did a second bmb there. still didnt give me much information or explanations. the one thing she did say was that i needed a transplant but she wouldnt do one because i have 2 young children and who would take care of them while i recovered. so it just kinda seemed like ATG was delaying the inevitable. they were just trying to hold off until my children were older. and who is she to make that decision anyway? i have a husband and family that would jump in. and no matter how many times i tried to call her to ask questions, she never called back. i feel like this whole situation has been flubbed at every opportunity.
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Kimberly; AA patient; diagnosed 10/11; ATG 01/12 with cyclosporine
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  #6  
Old Tue Mar 20, 2012, 01:12 PM
Marlene Marlene is offline
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When I did a search on her name it appears her interest is in bone marrow transplant. You need a doctor who can help you manage your current issues now. It doesn't appear she is interested in doing that and your existing doctor doesn't seem capable. Check out Neil's suggestion. You or your husband can call them. You don't need to rely on your current doctor.

You can also contact NIH directly. I don't have the contact info but there are others who have been to NIH for treatment and can help you.

You really do have to advocate for yourself. Your husband and family can help you navigate this.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #7  
Old Wed Mar 21, 2012, 10:36 AM
Sally C Sally C is offline
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Hi again Kimberly,
As I have posted many times I am a firm believer in the National Institutes of Health in Bethesda, Md. While my husband has MDS - and I firmly believe they saved his life - they also are on the cutting edge of AA.
I do not have the AA contact but will give you our contact for MDS - they all work together and she can give you the contact information.
They are so extremely accessible - sometimes I'll e-mail them and have an answer in 5 minutes.
Also please feel free to contact me via e-mail for any general questions regarding NIH. shcalvert3@aol.com.
Good luck and God Bless,
Sally

Barbara Weinstein RN BSN CCRP
NHLBI/ Research Nurse Specialist
Building 10 CRC Room 5130
10 Center Drive
Bethesda, MD 20892
phone: 301-594-4180
fax: 301-594-1290
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  #8  
Old Wed Mar 21, 2012, 12:36 PM
Dick S Dick S is offline
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First, find yourself a new doctor that knows what he's doing, your's apparently doesn't.

Sally C posted you a good contact at NIH.
Another good contact closer to you is:

Moffitt Cancer Center in Tampa
Attn. Jennifer @ 813-745-5413

Their head Hema/Onc is Dr. Alan List one of the developers of Revlimid for MDS.
Good Luck and we'll hang in there with you.
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Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.
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  #9  
Old Wed Mar 21, 2012, 03:19 PM
amberb amberb is offline
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I agree with one of the other postings. Being in Georgia you're close enough to go to Mayo. I am a patient there and have had two rounds of ATG. The Drs and staff there are so compationate and they have hotels there on the campus of the hospital. I personally see Dr. Richard Joseph, but they all work together in the hem/onc departement. If he doesn't know something, he'll talk to one of his superiors. They really are great and they will do everything to make sure you are comfortable and they take time to answer any questions you might have. Good luck, I hope things start to look up for you!
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Amber, age 24, diagnosed w/ SAA and treated w/ horse ATG 7/11, rabbit ATG 1/12, on cyclosporine. Started Desferal infusion for iron overload 7/12.
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  #10  
Old Wed Mar 21, 2012, 06:06 PM
Karenish Karenish is offline
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I concur with all the rest. Your doctor has not followed the protocol which is available to everyone on the internet and most top haemotology consultants are aware of it. here in the uk it is normally......
doses of anti viral, bacterial, body scans etc to make sure you have nothing lurking in the system before they start. then you take drugs to make you completely immune suppressed, then there should be a tiny trial dose of the atg, with the crash trolley in situ incase you have anaphylatic shock...if the trial dose causes no problems they then continue over a period of ?5 days (cant remember) then after that regular transfusions until you respond....and continue with some steroids and cyclosporine which is given dependent on your weight...you then wait about 3 weeks to make sure you have no more serum sickness (which is a bit like flu, aches pains, high temp and rashes) once this time period is over you are sent home with your meds to recuperate at home and to wait for marrow to reboot.......mine took 10 months but they normally like it to occur within the 6 months.. It certainly sounds like your doc is not at all sure what they are doing. Please take the advice of others. xx good luck xx but use all the support on here it work wonders, you CAN get through this, keep as positive as you can. xx
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