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#76
Wed Aug 12, 2009, 01:27 AM
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Hi Lynn,
It is my understanding that cyclosporine is generally well tolerated. Of course, there are always exceptions. Be sure not to exceed 5 mg/kg/day. You may have been on a much higher dosage 11 years ago, as the toxicity wasn't as well understood then. Unfortunately, it takes at least 3 months before you will know if it is working or not. I've never heard of it lowering someone's counts before raising them. Best wishes!
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58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent 
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#77
Fri Aug 28, 2009, 05:46 PM
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serum sickness
I had 2 bags of platelets today and they went from Fri. 7 to 4 today. My white cells are 3. and neutrophils 900, red 8.1. I think I'm going to have to have the horse serum. The rabbit isn't working. Sept 22 will be 6 months of going to the hospital all the time. It's too much to handle. Now to go thru this tx again is bad, I really don't have the support I need to go through this again. I just can't keep going for transfusion and neuprogen shots all the time. I'm worse now than I was before the rabbit. I'm trying not to get too depressed. It's just a bad day, Lynn
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#78
Sat Oct 24, 2009, 12:42 PM
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serum sickness
I have been having brain bleeds and I'm over the 6 month period from the rabbit ATG. I saw my doctor and he said that if I have a BMT since they found a match, that I would have 40 % chance of survival because of my age. So I want to have the horse ATG instead. I've been waiting to hear from him about a date to go. I've been having numerous platelet transfusions and my platelets are around 3. They won't go up. All my counts are dropping without transfusions. I had a blood test and my liver was off, so I had a sonogram and it looked normal. I don't know what to do now.
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#79
Mon Oct 26, 2009, 09:17 PM
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First off get another opinion. How old are you Lyn? I am 56 and my age wasn't an issue. Check out this transplant option to it's fullest, don't lose a good match! Educate yourself, explore all the options. Search yourself and decide for yourself don't let anyone scare you, remember thet you are going for the best quality of life, don't let any one scare you. Stay POSITIVE!! Vera
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Vera, 56 yo female Dx RAEB II 10-08, 11-12% blasts. Normal chromosomes. Started Vidaza 10-08. . Improved Dx 3-09 MDS RA 2% blasts 8 cycles Vidaza! SCT transplant 7-1-09 at UCSF. Normal bone marrow and MDS free as of 10-09  ________________________________________________
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#80
Mon Oct 26, 2009, 09:39 PM
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I went back and read that you are in your 40ties, and that made me mad. Is this dr a transplant specialist? Have you had a consultation with one? You need to, Do you like this doctor?
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Vera, 56 yo female Dx RAEB II 10-08, 11-12% blasts. Normal chromosomes. Started Vidaza 10-08. . Improved Dx 3-09 MDS RA 2% blasts 8 cycles Vidaza! SCT transplant 7-1-09 at UCSF. Normal bone marrow and MDS free as of 10-09 ________________________________________________
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#81
Mon Oct 26, 2009, 09:44 PM
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Mistake correction
I'm sorry Lyn I was looking at hopefulls age I have some antibiotic eyedrops in my eye and it's hard to see,, so how old are you?
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Vera, 56 yo female Dx RAEB II 10-08, 11-12% blasts. Normal chromosomes. Started Vidaza 10-08. . Improved Dx 3-09 MDS RA 2% blasts 8 cycles Vidaza! SCT transplant 7-1-09 at UCSF. Normal bone marrow and MDS free as of 10-09 ________________________________________________
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#82
Mon Oct 26, 2009, 09:55 PM
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RE: serum sickness
I am new to this website and have been trying to read all of the posts. I wish I knew about this website sooner. LynnDel - my thoughts and prayers go out to you. I went through the rabbit atg as well and was very sick for about 3 months. My counts went up but not high enough to be transfusion free, so my Dr. now wants to go ahead with the horse ATG. I have to get desensitzed first because I had a reaction to the skin test. I can't even imagine what you have been through. I hope you have friends/family who can help you. Don't be to proud when it comes to help, I was for awhile and then realized I really did need it.
I am also getting another BMB and MRI this week so I'll be thinking of you. Good luck to everyone and keep your chins up!!!
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#83
Thu Nov 12, 2009, 10:00 PM
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It is with great sadness that I share this news. My dear friend Lynn (Lynn del) has died. We met here, on marrowforums. Her friendship and support have meant so much to me. I am so thankful for this site, for giving me the opportunity to have met Lynn. She was a strong and selfless person and she will be dearly missed.
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#84
Fri Nov 13, 2009, 10:57 AM
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Thanks for taking the time to let us know about Lynn. I know she was struggling with this disease for quite some time and had numerous issues as a result of it.
Marlene
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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 July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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#85
Fri Nov 13, 2009, 08:54 PM
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I am just so sorry to hear about Lyn... she has been on my heart for a while and I know she had a tough time. I don't really have much to say except that I am so sad to hear the news... I will remember her from this forum as a valiant person who never stopped trying in spite of feeling so sick.
JEZ
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JEZ, 50s, diagnosed AA Dec 2006, ATG one time, serum sickness resolved / took cyclosporine (Neoral) with delayed response but now with good labs/ recent kidney toxicity, so off of cyclosporine now and trying generic Imuran
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#86
Sat Nov 14, 2009, 03:15 AM
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Lynn del's passing
Thank you, dkimmel, for sharing this news. I'm sorry for the loss of your friend, Lynn del, but glad that you had the opportunity to meet and support each other through Marrowforums. If you have any contact with Lynn's family, please give them our collective condolences. The diseases we are dealing with can be harsh as Lynn certainly experienced, but the legacy of her posts and those of her supporters on this site will help countless others in the future.
With sympathy, Ruth Cuadra
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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