Have I made the right choice??

[Srbmsr900]

Hello everyone.
I was recently diagnosed with aplastic anemia. As per procedure, my siblings went through the hla typing test and fortunately, my brother happened to be my 12/12 match. However, instead of pursuing the transplant route, we chose hATG therapy. Right now, I anxiously awaiting response.
I've read a few articles about the how transplant as a second line therapy is less effective. Have I committed a mistake.?? I'm extremely distressed. I'll be thankful for the responses.

[Marlene]

Sorry you have to deal with this disease. It's difficult to know which treatments will give the desired outcome. Your age, the severity of your AA and your overall health all play a role. It would be great if they could predict it but they can't. Did they give you a reason for recommending hAGT as you first line therapy?


The upside to getting hATG first is that if it does not work, you still have the transplant to fall back on.

[Hopeful]

Hi Srbmsr900,

I was in your situation almost 12 years ago with a perfect sibling match. I went the horse ATG route as well. I do not regret that decision at all now and am living a full life. I'll admit that I was nervous at first while waiting for some kind of a response. How many months has it been for you?

Be patient and positive. Take care of yourself. Rest and eat well.

Don't be in a hurry to get off cyclosporine.

Best of luck!

[Srbmsr900]

Originally Posted by Marlene

Sorry you have to deal with this disease. It's difficult to know which treatments will give the desired outcome. Your age, the severity of your AA and your overall health all play a role. It would be great if they could predict it but they can't. Did they give you a reason for recommending hAGT as you first line therapy?


The upside to getting hATG first is that if it does not work, you still have the transplant to fall back on.

I'm 22/male. I was suffering from pneumonia, therefore, the doctor was a bit apprehensive about the transplant. It's been 15 days post atg. My blood counts before and after are as follows

On 4th May
Hb- 8.1
Neutrophil - 1.12
Wbc-2.25
Platelet - 37

On 19 may
Hb-10.70
Neutrophil - 2.36
Wbc-4.48
Platelets - 92

I think I'm a quick responder. Let's hope it stays this way.

[Srbmsr900]

Originally Posted by Hopeful

Hi Srbmsr900,

I was in your situation almost 12 years ago with a perfect sibling match. I went the horse ATG route as well. I do not regret that decision at all now and am living a full life. I'll admit that I was nervous at first while waiting for some kind of a response. How many months has it been for you?

Be patient and positive. Take care of yourself. Rest and eat well.

Don't be in a hurry to get off cyclosporine.

Best of luck!

Hey hopeful,
First of all, congratulations on achieving sustained remission. Hoping it lasts for lifetime.


remission. Its been half a month since atg. My blood counts are as follows
On 4th May
Hb- 8.1
Neutrophil - 1.12
Wbc-2.25
Platelet - 37

On 19 may
Hb-10.70
Neutrophil - 2.36
Wbc-4.48
Platelets - 92

I think I'm a quick responder. Let's hope it stays that way. How has your treatment been for last 12 years. Any bumbs down the road?

[GoodDay5150]

I am not a medical doctor, just a 10 + yr patient w/ PNH pre and post allo transplant. I know that sometimes AA can go into remission and then return as PNH years later. (Remission after being treated w/ ATG.) I am not aware of the exact statistics, but I have met a few people who have experienced those results. I have met a few different doctors who have had differing opinions than those of my transplant team, so you may get different answers from different dr's. There are many excellent resources avail online including NORD, as well as some others. We all wish you well in your treatment plan.


Mario

[Hopeful]

Hi Srbmsr90,

Were you transfusion dependent before the ATG? It does seem like you are responding quickly. I wonder if it is because the doctors are treating it aggressively vs. watch-n-wait. You have youth on your side as well!

Are you taking cyclosporine?

Do they have suspicions on what may have caused your AA?

[DanL]

Hi Srbmsr90,
I am sorry about the diagnosis, but as others have mentioned you have one crucial element on your side: youth. Young people tend to respond to most treatments better than older patients, and depending on general overall health are better candidates for treatment and transplant due to fewer comorbidities. There is mixed evidence about treatment with ATG prior to transplant. The keys are that you find doctors you trust and get to know your possible hospitals, doctors, and nurses that would be taking care of you should transplant be necessary.

Most doctors follow a version of a risk/reward analysis to determine whether immediate transplant is preferred over more conservative and conventional treatment. Their goal, not to be morbid, is to maximize your lifespan with the greatest likelihood of longevity. I waited almost 4 years for my transplant for MDS because of this matrix, my relatively young age (I was 36 when diagnosed with MDS whereas the average age of diagnosis in the US is close to 70), and because I trusted the team of doctors and the fact that their average BMT nurse has 8 years of BMT experience. They are your front line of protection during transplant and and subsequent hospital stays.

You are blessed with an ideal donor and believe that you probably made the right choice. I am not a doctor, but I am a 7 year allo-transplant survivor who has experienced and lived through just about every complication a transplant patient can have, from GVHD to relapse, to sepsis several times, pneumonia 3 times, cdiff, VRE, cataracts, 3 joint replacements and a slew of others. I have been the luckiest unlucky patient, yet I stand because of the team of doctors and trust that it can and will all improve with time.

Transplant carries relatively high risk compared to ATG, and some patients go years or even decades without the need for additional treatment. Take your meds, as somebody else mentioned, come off of the immune suppressants slowly, ask lots and lots of questions, especially why are we doing it this way, and what are the risks of this way vs that. Report all side effects, no matter how insignificant they seem, and feel free to seek out alternatives if the side effects are too much to bear.

Trust yourself, keep all appointments, ask questions, find the best Dr and team for you, and good results should follow.

Sorry for the long post

Dan

[Srbmsr900]

Originally Posted by Hopeful

Hi Srbmsr90,

Were you transfusion dependent before the ATG? It does seem like you are responding quickly. I wonder if it is because the doctors are treating it aggressively vs. watch-n-wait. You have youth on your side as well!

Are you taking cyclosporine?

Do they have suspicions on what may have caused your AA?

Yes. I was transfusion dependent. Had 9 rbc and 60 platelets. My recent blood reports I dictates that my hb is 10.7, anc-1.08, platelets - 75.

[Srbmsr900]

Originally Posted by DanL

Hi Srbmsr90,
I am sorry about the diagnosis, but as others have mentioned you have one crucial element on your side: youth. Young people tend to respond to most treatments better than older patients, and depending on general overall health are better candidates for treatment and transplant due to fewer comorbidities. There is mixed evidence about treatment with ATG prior to transplant. The keys are that you find doctors you trust and get to know your possible hospitals, doctors, and nurses that would be taking care of you should transplant be necessary.

Most doctors follow a version of a risk/reward analysis to determine whether immediate transplant is preferred over more conservative and conventional treatment. Their goal, not to be morbid, is to maximize your lifespan with the greatest likelihood of longevity. I waited almost 4 years for my transplant for MDS because of this matrix, my relatively young age (I was 36 when diagnosed with MDS whereas the average age of diagnosis in the US is close to 70), and because I trusted the team of doctors and the fact that their average BMT nurse has 8 years of BMT experience. They are your front line of protection during transplant and and subsequent hospital stays.

You are blessed with an ideal donor and believe that you probably made the right choice. I am not a doctor, but I am a 7 year allo-transplant survivor who has experienced and lived through just about every complication a transplant patient can have, from GVHD to relapse, to sepsis several times, pneumonia 3 times, cdiff, VRE, cataracts, 3 joint replacements and a slew of others. I have been the luckiest unlucky patient, yet I stand because of the team of doctors and trust that it can and will all improve with time.

Transplant carries relatively high risk compared to ATG, and some patients go years or even decades without the need for additional treatment. Take your meds, as somebody else mentioned, come off of the immune suppressants slowly, ask lots and lots of questions, especially why are we doing it this way, and what are the risks of this way vs that. Report all side effects, no matter how insignificant they seem, and feel free to seek out alternatives if the side effects are too much to bear.

Trust yourself, keep all appointments, ask questions, find the best Dr and team for you, and good results should follow.

Sorry for the long post

Dan

Thank you, DanL. I wonder if you have elaborated on your journey uptil now. I'll be pleased to read it.

[Hopeful]

Hi Srbmsr90,

I hope your counts are continuing to trend in the right direction!

In the past, I have read that there is a tendency to stop cyclosporine at 6 months for early responders. This can lead to relapse, so be cautious and don't taper if your counts are still rising.

Best of luck to you, and let us know how it is going!