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Drugs and Drug Treatments ATG, Cyclosporine, Revlimid, Vidaza, Dacogen, ...

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  #1  
Old Tue Jun 21, 2011, 01:22 PM
Darija Darija is offline
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Join Date: May 2011
Location: Los Angeles
Posts: 5
Immuno- Suppressive Therapy, First Timer. A.A. newbie.

Hello, I'm a first time poster, and an Aplastic Anemia newbie.
I am sure you have seen many posts and threads on ATG treatments, etc.
But I had some more questions, in hopes I can get any opinions, answers, or advice from anyone!
I am 26 years old, and have been diagnosed with A.A. about a month ago.
My siblings were unfortunately not matches for being donors for transplant, so instead of waiting idly by, my doctors want me to start Immuno-Suppressive Therapy tomorrow. I have read about people's reactions (both good and bad), and know that everyone is different, I just don't know what to expect.
What is serum sickness? and does anyone know if ATG will cause any problems later on down the road? I am hesitant to pursue this treatment because I feel healthy and energetic now (despite my severely low blood counts), and I fear leaving this treatment will make me much more worse off, because I seem to feel fine now.
Does anyone have any tips or advice for a more pleasant hospital stay during treatment?
I would appreciate any feedback whatsoever,
thank youuuu!
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  #2  
Old Tue Jun 21, 2011, 02:10 PM
Karenish Karenish is offline
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Join Date: Feb 2011
Location: Stafford, United Kingdom
Posts: 100
immuno suppressive tx

Quote:
Originally Posted by Darija View Post
Hello, I'm a first time poster, and an Aplastic Anemia newbie.
I am sure you have seen many posts and threads on ATG treatments, etc.
But I had some more questions, in hopes I can get any opinions, answers, or advice from anyone!
I am 26 years old, and have been diagnosed with A.A. about a month ago.
My siblings were unfortunately not matches for being donors for transplant, so instead of waiting idly by, my doctors want me to start Immuno-Suppressive Therapy tomorrow. I have read about people's reactions (both good and bad), and know that everyone is different, I just don't know what to expect.
What is serum sickness? and does anyone know if ATG will cause any problems later on down the road? I am hesitant to pursue this treatment because I feel healthy and energetic now (despite my severely low blood counts), and I fear leaving this treatment will make me much more worse off, because I seem to feel fine now.
Does anyone have any tips or advice for a more pleasant hospital stay during treatment?
I would appreciate any feedback whatsoever,
thank youuuu!
My advice to anyone is, try not to get too hung up on the internet, there are lots of scary negative stuff which although can be informative, can also make you worry and get stressed! I am 51 no match and because of my age bone marrow transplant would be the very last option. So here in the UK rabbit is the first line they use (atg) - for me personally serum sickness was not a problem, I had the shakes the first night (bit like flu - but i was laughing at myself in the mirror because I couldnt stop my teeth chattering, the nurses got my temperature down with paracetomol, i then came out in a rash which they got rid of with piriton. Then nothing really but a couple of rashes over the fortnight and a stiff jaw, with odd aches here and there, but truly nothing remarkable as they say. Boredom is the main thing, so take in a laptop, knitting, adult colouring in, dvd's which make you laugh and fruit juice....water can get very boring when you are stuck in isolation for a few weeks. But not grapefruit, that apparently does not work well with cyclosporin. Once you have had the treatment try not to get hung up on your counts....its a roller coaster, I had to switch off to it all because really, they arent interested until the third to sixth month after you have received your last dose. I had mine beginning of march so I am now in my third month and waiting for them to climb so i can become transfusion free! You may achieve them sooner, you may not, but try and go with the flow and keep thinking positive. I find it comforting to know that everyone is absolutely different to the other, some on here dont have any improvement in counts until the 6th month and then they steadily climb over a period of 18 months, some achieve full counts within a month (lucky them). There are risks of course with all treatments, but I will let your doc go through these, and remember what is the alternative? It is relatively new this treatment, and the research will change as the years go on, AA is a chronic disease, not terminal!!! it can be treated, might be a bit inconvenient going for lots of blood tests and having the treatment, but again what would be the alternative. Remember even the consultants are not 100% sure with this disease they too are learning as the figures of people surviving longer than say 30 years ago. If you do read any research papers, check the date!!! I remember reading one saying that life expectancy was 2 - 5 years, and then saw the date of the paper was 1979!!! doh! other than that, treat yourself to fresh air when you can, and abide to the rules regarding what you can and cannot eat - and as soon as your counts come above critical (which mine now have) start to enjoy your life again, but take a bit more care with hand hygiene, your eyes are the easiest way to pick up an infection, so keep those hands clean all the time!!! good luck and you may get more tips by reading the ~AA section on here. If i have missed anything I am sure someone will pitch in. xxxx good luck xxx
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  #3  
Old Tue Jun 21, 2011, 02:18 PM
Lisa V Lisa V is offline
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Join Date: Aug 2006
Location: Waimanalo, Hawaii
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I'll let someone who has experience with serum sickness answer the first question. Ken was lucky and didn't have any either time.

As far as IST causing problems down the road, that possibility certainly exists. Any time you suppress part of your immune system you are increasing your susceptibilty to various opportunistic infections and diseases. That doesn't necessarily mean you are going to get them, however, and I think what you need to look at here are your options. With AA, there are no risk-free options, plain and simple.

Left untreated, the consequences are potentially far more severe. The odds of spontaneous remission without treatment are about 20%. Most doctors feel that you can get by with lowered T-lymphocytes (what the ATG/cyclo is designed to knock out) as long as your neutrophil count is high enough to take up the slack, but if your overall white count drops so low that you become neutropenic you are in far more danger. Of course this can happen during treatment too, but hopefully in that case it is just temporary, until the IST kicks in. By keeping the "bad" (auto-immune) T-lymphs in check, you allow the neuts to flourish (this is, of course, an oversimplification).

Additionally, if your platelets get too low, you risk serious injury or internal hemorrhaging. If your red count gets too low, you will not only feel very tired, you will be putting a strain on your heart. If you are being transfused, the complications that come with that (iron overload, building up antibodies) also have serious health consequences.

I'm not trying to scare you, just trying to put things into perspective. Some of this may be unavoidable no matter what you do. The fact that you feel fine now, and will probably feel sicker on medication, doesn't make it any easier. It's tempting to rely on that feeling, but it is misleading. If there were a better, safer option than ATG/cyclo, I'm sure everybody here would jump on it! Maybe someday there will be, but for now, I'm not seeing one.

Hope this helps. Good luck, whatever you choose to do.
__________________
-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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  #4  
Old Tue Jun 21, 2011, 09:44 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 670
Quote:
Originally Posted by Darija View Post
Hello, I'm a first time poster, and an Aplastic Anemia newbie.
I am sure you have seen many posts and threads on ATG treatments, etc.
But I had some more questions, in hopes I can get any opinions, answers, or advice from anyone!
I am 26 years old, and have been diagnosed with A.A. about a month ago.
My siblings were unfortunately not matches for being donors for transplant, so instead of waiting idly by, my doctors want me to start Immuno-Suppressive Therapy tomorrow. I have read about people's reactions (both good and bad), and know that everyone is different, I just don't know what to expect.
What is serum sickness? and does anyone know if ATG will cause any problems later on down the road? I am hesitant to pursue this treatment because I feel healthy and energetic now (despite my severely low blood counts), and I fear leaving this treatment will make me much more worse off, because I seem to feel fine now.
Does anyone have any tips or advice for a more pleasant hospital stay during treatment?
I would appreciate any feedback whatsoever,
thank youuuu!
My biggest regret is that my IST was delayed while my doctors debated my illness. You must keep in mind that in most cases, your body can't recover from SAA on its own. The sooner treatment is started, the less damage to stem cells, the better the prognosis. Without treatment, despite "feeling" healthy and energetic, you will eventually become transfusion dependent, which is not a good thing. IST is not a cure, but it can buy you time and help you manage your disease if successful. If you respond to the treatment, you won't be worse off. I was very active before treatment, and am still that way now. Keep a positive attitude, maintain a healthy and active lifestyle, and don't let the disease define who you are!

Good luck with the ATG!
__________________
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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  #5  
Old Tue Jun 21, 2011, 11:56 PM
Darija Darija is offline
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Join Date: May 2011
Location: Los Angeles
Posts: 5
Thank you so much for all of the advice and encouraging words. This really helps tremendously, I feel I can go into this now with a positive attitude and be hopeful that my body will follow with positive outcomes! here's to one interesting week... xo
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  #6  
Old Sat Oct 8, 2016, 07:00 PM
Windhorse1 Windhorse1 is offline
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Join Date: Oct 2016
Location: Boulder, CO USA
Posts: 6
Right there with you

Hi Darija,

I just got my AA diagnosis a couple of days ago, and started treatment yesterday. ATG and cyclosporine. So I'm brand-new, as well, and thank you for your questions...and the others for their answers. I'm 58, so not a good subject for transplant. Hoping the ATG & cyclo will work, but also wondering about activity levels, quality of life, and all the rest.

Still trying to figure out the best way to use this site, so I'll hit "reply" for now, and hope others can see this thread.

Hang in there, and nice to meet you!

Matt
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  #7  
Old Sat Oct 8, 2016, 07:41 PM
bailie bailie is offline
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Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Matt, welcome to the forum. Keep in mind that this is an older thread. Darija last posted in 2013 so you might not get a response. Also, age 58 is no problem for a stem cell transplant.
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #8  
Old Thu Oct 13, 2016, 05:46 PM
jjcanada jjcanada is offline
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Location: woodstock, ontario, canada
Posts: 3
Hi Matt

I had atg done in january of this year. Still on cyclosporine, but that's all right now. I am a part of the trial at the NIH, and i also had eltrombopag. They just quit that at the end of July.
I am 40, and I am just starting to feel better, and stronger. I had hoped to do a fitness challenge, but i had a fall on Saturday morning, and did some injury to my back. I'm on the mend, and hope to start back at it asap. I would say, my quality of life is pretty good right now. I am struggling a bit with depression, i think. But from what i hear, that's not uncommon.

take care,
Jackie
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