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AA Aplastic anemia

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  #1  
Old Tue Jan 10, 2012, 08:16 PM
viperphil11 viperphil11 is offline
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Cytoxan or Horse ATG

Hello, my name is Phillip and im 20 years old. I have resently been diagnosed with AA. My doctors gave me two possible treatments which are Cytoxan and Horse ATG and I really dont know which one to choose and i need some info from people who have had one or these treatments. I would like to know the side effects and the effectiveness of the treatment you under went. Thanks.
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  #2  
Old Wed Jan 11, 2012, 01:53 AM
Hopeful Hopeful is offline
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Hi Phillip,

The standard treatment protocol for SAA for a 20 year old is:

First choice: Matched sibling BMT
Second: Horse ATG + Cyclosporine

Here is an excellent article that discusses the current guidelines for diagnosing and treating aplastic anemia:

http://onlinelibrary.wiley.com/doi/1...09.07842.x/pdf
__________________
52 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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  #3  
Old Wed Jan 11, 2012, 02:10 AM
viperphil11 viperphil11 is offline
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To Hopeful

Thanks for the reply. Since im an only child there is no sibling match for me so the ATG would be the next step.
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  #4  
Old Wed Jan 11, 2012, 03:56 AM
Hawaii Bill Hawaii Bill is offline
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Centers of Excellence

Hi viperphill11,

Many of us here recommend treatment or at least close consultation with doctors who have more experience with AA. Are you close enough to one of the centers of excellence for AA treatment? There is a link somewhere...

Based on what I've read of some others' experiences, being treated at a place where the doctors and staff are familiar with ATG treatment can really help!

At least you have found this forum BEFORE your treatment!!

Keep us posted!
__________________
Male, 56, dx Nov2006 VSAA (BMA:0%). Responded to ATG/CsA/Prednisone/Neupogen Dec 2006, but relapsed in June 2007. Counts are responding to using CsA 200mg bid alone since Jun 2008. Last PRBC tx: Jul 2008.
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  #5  
Old Wed Jan 11, 2012, 08:59 AM
Marlene Marlene is offline
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I suggest you get a consult with Dr. Robert Brodsky at Hopkins for the Cytoxan protocol. He's your best bet to get the latest stats on the treatment and can answer all your questions. Search on high dose cytoxan and you'll find some post on the treatment. HiCy has better outcomes when it is the first line treatment for AA. The outcomes are lessened when it is used after ATG has failed.

The best advice I can give you at this point is to explore all your options and then go with the one you are most comfortable with. So many things come into play when deciding on a course of treatment. And it is important to be treated by a doctor at hospital with experience with AA.

You will find that everyone has a different journey no matter which treatment they decide upon. And no one can predict how you will react or what your personal outcome will be.
__________________
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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  #6  
Old Tue Jan 17, 2012, 10:39 PM
dfantle dfantle is offline
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Centerws of Excellence Locations

Hi Bill, would you be able to reply with a list of the centers for excellence? I too am new to the site.

Thanks, Dena

Quote:
Originally Posted by Hawaii Bill View Post
Hi viperphill11,

Many of us here recommend treatment or at least close consultation with doctors who have more experience with AA. Are you close enough to one of the centers of excellence for AA treatment? There is a link somewhere...

Based on what I've read of some others' experiences, being treated at a place where the doctors and staff are familiar with ATG treatment can really help!

At least you have found this forum BEFORE your treatment!!

Keep us posted!
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  #7  
Old Tue Jan 17, 2012, 10:54 PM
dfantle dfantle is offline
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Hi Dose Cytox & Iron Chelation

Hi Marlene, couple questions.

Are you aware of any papers which have been published using the high dose Cytoxin protocol?

Also, I'm curious what your husbands FE level was before he started chelation therapy. I'm told my iron levels are close to needing treatment but were not there yet, at the last check in December.


Thank you, Dena
DX Heavy Chain Amyloidosis (AMY)kidneys June 2010 (no kidney damage), velcade dex Sept-Dec 2010, Auto-SCT March 2011, remission from AMY June 2011. AA since end June 2011 with transfusion dependancy. AA was likely caused by a lengthy B19 parvovirus infection from end June 2011-end Nov 2011. Horse ATG is current planned treatment likely in February.


Quote:
Originally Posted by Marlene View Post
I suggest you get a consult with Dr. Robert Brodsky at Hopkins for the Cytoxan protocol. He's your best bet to get the latest stats on the treatment and can answer all your questions. Search on high dose cytoxan and you'll find some post on the treatment. HiCy has better outcomes when it is the first line treatment for AA. The outcomes are lessened when it is used after ATG has failed.

The best advice I can give you at this point is to explore all your options and then go with the one you are most comfortable with. So many things come into play when deciding on a course of treatment. And it is important to be treated by a doctor at hospital with experience with AA.

You will find that everyone has a different journey no matter which treatment they decide upon. And no one can predict how you will react or what your personal outcome will be.
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  #8  
Old Wed Jan 18, 2012, 04:42 AM
Hawaii Bill Hawaii Bill is offline
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Hi Dena

http://www.marrowforums.org/resources.html

It's on the resources page. Scroll down to see the Centers that specialize in bone marrow failure disease. There's even a map.
__________________
Male, 56, dx Nov2006 VSAA (BMA:0%). Responded to ATG/CsA/Prednisone/Neupogen Dec 2006, but relapsed in June 2007. Counts are responding to using CsA 200mg bid alone since Jun 2008. Last PRBC tx: Jul 2008.
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  #9  
Old Wed Jan 18, 2012, 07:12 AM
Marlene Marlene is offline
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Here's what was published in Blood Journal. Also, do a Cytoxan search on this forum and it will bring up various threads on the subject.

http://bloodjournal.hematologylibrar...2136.full.html
__________________
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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  #10  
Old Wed Jan 18, 2012, 09:41 AM
Marlene Marlene is offline
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John started chelation approx 14 months after his treatment. His FE was at 4469 then. He started with IV Desferral, switched to Phlebotomies but then ended up going back on Desferral because his bone marrow couldn't handle the stress of the phlebotomies. He switched to Exjade when that became available.

He does not tolerate either of those med very well and switched back to smaller phlebotomies every other month and added in wheat grass juice. We haven't checked his FE in since last April so I don't know where it's at right now.
__________________
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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  #11  
Old Fri Jan 20, 2012, 10:27 AM
amberb amberb is offline
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Hi! I know you've gotten a lot of responses to this post, but this has been my experience... I had Horse ATG in July 2011 along with Cyclosporine. It really wears you out, I had absolutely no energy and it causes your WBC and ANC to drop. Because of the drop in the neutraphils I was on antibiotics, anti virals, and anti fungals as a precaution so I wouldn't catch any other airborne illnesses. Along with all the prophalactics, I had to follow neutropenic precautions which includes a special diet in which you can't have any fresh fruits or vegetables, under cooked meats, certain cheeses, and anything that isn't pasturized. I also stayed away from public or crowded places, if I did have to go to the store I would wear a mask. I also kept things very clean. I can't tell you how many bottles of Lysol spray and hand sanitizer I've gone through.
With the ATG there is the three to six month waiting period to see if it is working. By the third month my numbers had crept up enough to where I could come off the antibiotics, but still continue the diet and other precautions. I waited a full five months to decide that I wanted to repeat the ATG (all this time not working and got approved for disability). My bone marrow had gone from less than 20% cellularity to 80%, but it wasn't showing in my blood work. I had rabbit ATG on Jan 10th. So far I have shown an initial response, but they don't know if it is due to the ATG or the cortisone they give in conjunction with it. I am still on Cyclosporine. If the AA goes into remission they wait, I believe, at least 90 days to start tapering off the Cyclosporine.
I hope this can help some in making this difficult decision. It's rough. I had extreme fatigue, nausea, and vomiting for almost three months before starting to feel better, but it does get better. The first thing I did when they told me I could stop the neutropenic diet was go out and have a salad and a rare steak. My Drs have told me stories of patients who don't follow the diet carefully and eat out and end up getting a virus on top of everything and it really sets them back in their treatment. So my one bit of advice would be, if you go with the ATG, to be diligent about the precautions and resist the temptations of going out.
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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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  #12  
Old Fri Jan 20, 2012, 03:39 PM
Lisa V Lisa V is offline
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It sounds like you've had a pretty rough time with ATG, Amber. I'm sorry to hear that. People's reactions to it can be as individual as their conditions going into it. Some have difficulty tolerating it, while others, like my husband, pretty much sail through it. I am so grateful he has never become severely neutropenic.

My understanding of the cytoxan protocol, however, is that everybody becomes severely neutropenic because it basically obliterates your immune system and waits for it to regenerate on its own. This tends to be a longer and more difficult process than ATG, so any difficulty with ATG should not be seen as weighing the scales in the other direction.

The main attraction of cytoxan, of course, is that it offers the possibility of a complete cure rather than just remission. I say "possibility" because, as we have seen, even people who have had transplants can relapse. The advantage of cytoxan alone without transplant is that you avoid the GVHD issues, but without any donor cells to fill in the void, you are going to be vulnerable to infection for some time. Naturally, they're not going to send you home shortly after treatment the way they may with ATG. Expect to be in hospital isolation for a while.

None of this is meant to recommend one treatment over another, just some things to think about. There are pros and cons to each one, and the best thing to do is talk to the doctors that would be doing each procedure and go with what feels right for you.
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-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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  #13  
Old Sun Aug 26, 2012, 01:28 AM
amandana amandana is offline
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I can't and no one can advice you of which treatment you should take that is a personal decision that you have to make, because everyone is different and no one AA patient is the same.

I was diagnosed with SAA in February of 2011 after 2 year battle with Iron Deficiency. Before diagnosis I became transfusion dependent on iron, platlate and white count were low for about three months they fluctuated and dropped I kept going in for transfusions.

Before diagnosis I got very sick, I was weak, and also fighting the flu at the same time I eventually went in to my doctor for a checkup I got send for complete blood work as well as a marrow biopsy to check my cellulite and to rule out leukemia or other blood disorders which my symptoms pointed too. The next day my doctor called and he said I had to go in and start treatment as soon as possible and was diagnosed with AA.

I received ATG treatment, the hematologist that I had which was in New York at the time of diagnosis. He gave us the options of both ATG and Cytoxan being a new promising treatment he explained that I should look into both which my husband and I looked into getting a consult with Dr Brodsky which I was very lucky to have had the chance to see him and he explained the protocol and giving my history of iron anemia and some previous health history with heart problems and my dependency on transfusions he felt that I would be a good candidate for the treatment and because of my age.

With Cytoxan treatment itís similar to a BMT without the actual transplant he explained that the possibility of a cure is because the body is confused and attacks your bone marrow so they say with the cytoxan treatment itís like a computer and it jump starts the system and reboots it like a computer to re build the new marrow and grow cells so it eradicates the lymphocytes data I guess you can say to attack our cells it erases that memory so it stops attacking the marrow. Dr Brodsky is very knowledgeable and being his the lead of the treatment he would be your best information source.

As for the GVHD issues, Cytoxan comes with its own complications because it is a very high dose its virtually toxic to our system but at the same time does the job that could potentially lead to a ďcureĒ and full remission rather than continued ATG treatments with no possibility of a remission. I read some studies on it and in the initial trials they have showed that Cytoxan treatment that the prognosis within I think 1 year after treatment is much higher then continued ATG treatment with a full remission within I think 5 years after treatment where ATG was very low. Keeping in mind that prognosis is also based on age and time of treatment of a patient with AA from time of diagnosis. Dr Brodsky had explained that someone younger would have a much higher chance of remission from Cytoxan treatment then someone whoís older because they can recover faster.

My decision to take cytoxan treatment was personally best for my situation and prior health issues, as well as my age being a big factor as I was 25 at the time of diagnosis. But as I said the Cytoxan comes with itís own complications, It made me very sick which is expected since they eradicate all of your marrow and cells, so you build new, I received growth factors and transfusions to start rebuilding cells but did not see any growth until about a month after treatment.

I also developed severe pneumonia infection which they had to eventually put me into a coma because I couldnít breathe on my own and developed sepsis which turned to acute respiratory distress syndrome. I was in the hospital for six months total and four of those in an induced coma. I had neutorpenia for 9 months after treatment was diagnosed with severe neutropenia my ANC was below 500 at the time that I developed pneumonia. My cellulity was less than 25% at diagnosis which now last I checked was at 75% which it has now been 17 months since treatment. Among those complications I got diagnosed with Type 1 diabetes in July of 2011 which is my current new lifetime battle along with my recovery from AA.

I really hope this helps you in your decision remember that either treatment is your best bet for a recovery in the long run just keep positive and think about what is best for you. I am here anytime if you need be.
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