2nd ATG just 2 years after the 1st

[paulaespada]

Hello!


I've been out here.

My husband AA relapse was confirmed and he was hospitalized June 18th and had a 2nd ATG course.

I am dwelling with all this but very depressed.

Jorge is improving but a 2nd time is a 2nd time. No more illusions. This is an awful disease.

Leaving one day at a time but now we know that people may live longer... success cases most be rare.

I feel is just a matter of time. I don't believe in medicine miracles anymore.

[Hopeful]

Hi,

I'm so sorry to read of Jorge's relapse. Did his doctors try to salvage him with Cyclosporine alone at first?

I've read that people with good responses the first time around usually have good responses again the second time. I know that does not help with the discouragement of having to go through this process again, but it least it can give you encouragement that he will get stronger again.

How long was your husband on Cyclosporine? How quickly did he taper? Hopefully, the doctors will learn from this experience and will adjust things so that he will be one of the success stories of the future Stay positive!

[Marlene]

So sorry to hear this. There are many here who needed two ATG treatments and are doing well after. Keep the faith...Jorge is strong.

Marlene

[Laura]

Dear Paula,
So very sorry to hear the news! How is he tolerating the treatment? I echo what everyone else says.

Keep us updated.

Laura

[paulaespada]

Dear Hopeful, Marlene and Laura


Thank you for your posts.

I'm trying to catch hope but it's been very hard.

Your answer to my desperate post show me that there are people who still care.

[paulaespada]

Originally Posted by Hopeful

Hi,

I'm so sorry to read of Jorge's relapse. Did his doctors try to salvage him with Cyclosporine alone at first?

I've read that people with good responses the first time around usually have good responses again the second time. I know that does not help with the discouragement of having to go through this process again, but it least it can give you encouragement that he will get stronger again.

How long was your husband on Cyclosporine? How quickly did he taper? Hopefully, the doctors will learn from this experience and will adjust things so that he will be one of the success stories of the future Stay positive!

Everything happened so quickly!

In January his doctor told he was a "case of success". Cyclosporine was been taping since it began in June 2008 (I'm not sure if I understand tapping concept). As far I understand, it was been decreasing from 300 mg to 250 in the fisrt 6 months. Then, decreasig until January 2010 when it stopped.
In May, his platelets were dropping and his doctor want him to have another mielogram and bone biopsy which found AA again. Doctos decided ATG 2nd course. My husband asked if it was not possible to try cyclosporine again. His doctor explain that his bone marrow was so aplasic that it was better to go to ATG trying to avoid an uncontrolled situation. His Platelets count was dropping 20 every week.

Jorge went to ATG without problems.
His CBC is improving. Yesterday: Platelets - 104; Neutrophils - 1900; Hb - 9.6
Just after ATG his CBC was: Platelets - 6; Neutrophils - 200; Hb - 6

Doctor prescribed Neulasta to white blood cells development - this time Jorge has been receiving this shots every 2 weeks. But then yesterday he was almost desperate because he heard that these shots can lead to MDS.
Is it true?

He is still very tired, doesnt want to do nothing.
He is receiving psychological help but I see no improvement in his psychological state. Maybe because I am no help, also (I am receiving psychological help as well).


Thank you for trying to help when I was really down!

[Lisa V]

Paula, I'm sorry that Jorge has had to have a second ATG. It sounds like he started to relapse shortly after the cyclosporine was stopped completely. That is fairly common, and I agree with the doctor that starting cyclo again without ATG would probably not have helped.

I can understand why both of you are worried and depressed, but the good news is that this gives the doctors a chance to learn from the first round of treatment, and hopefully improve on it this time. That was the case for my husband, who is still doing fine four and a half years after his second ATG (which was a year and a half after the first one). He relapsed after the taper too, so we learned that it is probably better not to taper him off completely.

Ken was getting Neupogen (similar to Neulasta but not as long lasting) with the first ATG, but they didn't give it to him with the second one. Looking back, I'm not sure he really needed it the first time because for him his WBCs were always the least affected line. My feeling at this point is that for severe neutropenia (neutrophils 500 or below) the benefits of getting it do outweigh the risks, but once they get above that it's best to be cautious. I've always wondered if that is what caused Ken to develop his trisomy 8 mutation. Of course it may have been there all along and we just didn't see it because the sample was so small. It's hard to know.

At any rate, even though it was terrifying at the time, I'm now almost glad Ken had to have a second ATG because he's doing so much better now than after his first one! Hopefully the same will be true for Jorge!

[Neil Cuadra]

Paula,

There was a discussion about whether Neulasta can cause MDS in this forum thread and it would be nice to know if doctors have done more research or revised their thinking about it since then.

Every drug has potential side effects, so doctors and patients have to weigh the tradeoffs. The most common side effects of Neulasta are bone pain and muscle pain. Some patients experience headaches. Those are unpleasant side effects but probably won't stop somebody from taking Neulasta if they need it. There are also rarer side effects, such as making the disease worse.

It's unfortunate that patients have to choose between two bad choices. If a patient is dangerously low on neutrophils, uncommon side effects of Neulasta shouldn't be their main concern, because they are at much greater risk if they don't get their white count up.

I don't mean to dismiss Jorge's concern, but he or you should talk to the doctor frankly about how long the advantages of taking Neulasta will outweigh the disadvantages. If he doesn't have to take Neulasta for long, there's less risk, so getting out of danger is the goal.

[paulaespada]

Originally Posted by Lisa V

Paula, I'm sorry that Jorge has had to have a second ATG. It sounds like he started to relapse shortly after the cyclosporine was stopped completely. That is fairly common, and I agree with the doctor that starting cyclo again without ATG would probably not have helped.

I can understand why both of you are worried and depressed, but the good news is that this gives the doctors a chance to learn from the first round of treatment, and hopefully improve on it this time. That was the case for my husband, who is still doing fine four and a half years after his second ATG (which was a year and a half after the first one). He relapsed after the taper too, so we learned that it is probably better not to taper him off completely.

Ken was getting Neupogen (similar to Neulasta but not as long lasting) with the first ATG, but they didn't give it to him with the second one. Looking back, I'm not sure he really needed it the first time because for him his WBCs were always the least affected line. My feeling at this point is that for severe neutropenia (neutrophils 500 or below) the benefits of getting it do outweigh the risks, but once they get above that it's best to be cautious. I've always wondered if that is what caused Ken to develop his trisomy 8 mutation. Of course it may have been there all along and we just didn't see it because the sample was so small. It's hard to know.

At any rate, even though it was terrifying at the time, I'm now almost glad Ken had to have a second ATG because he's doing so much better now than after his first one! Hopefully the same will be true for Jorge!

Lisa

Your post brought great hope for me and Jorge.
Yes, we must tell Jorge's doctor that if renal function if fine as it has always been, go on with ciclosporine is better.

Indeed I have no words to tell you how grateful I am for your post.

You helped us very much.

Can I ask you which cyclosporine dose is your husband on?

Blessings!

[paulaespada]

Originally Posted by Neil Cuadra

Paula,

There was a discussion about whether Neulasta can cause MDS in this forum thread and it would be nice to know if doctors have done more research or revised their thinking about it since then.

Every drug has potential side effects, so doctors and patients have to weigh the tradeoffs. The most common side effects of Neulasta are bone pain and muscle pain. Some patients experience headaches. Those are unpleasant side effects but probably won't stop somebody from taking Neulasta if they need it. There are also rarer side effects, such as making the disease worse.

It's unfortunate that patients have to choose between two bad choices. If a patient is dangerously low on neutrophils, uncommon side effects of Neulasta shouldn't be their main concern, because they are at much greater risk if they don't get their white count up.

I don't mean to dismiss Jorge's concern, but he or you should talk to the doctor frankly about how long the advantages of taking Neulasta will outweigh the disadvantages. If he doesn't have to take Neulasta for long, there's less risk, so getting out of danger is the goal.

Thank you very much for your answer.
I will read more about Neulasta.
And me and Jorge must find courage to discuss treatment. Doctor is not easy in speaking, in spite he had improved it after Jorge relapse.

[Lisa V]

Originally Posted by paulaespada

Can I ask you which cyclosporine dose is your husband on?

Paula, for the last 3 1/2 years, he has been taking 175 mg of Gengraf per day (100mg in the morning, 75mg in the evening). He weighs about 175 lbs, so about 1 mg/lb of body weight? This is somewhat less than the maximum therapeutic dose, but he can't tolerate any more for very long without it affecting his kidneys. He has to drink LOTS of water too, which was hard to get him to do at first, but now that he's seen the results he's gotten used to it.

They initially started him out at 900 mg/day, which was much too high, and he had lots of unpleasant side effects. Over the next several months we gradually lowered it to 200 mg/day, but when he went in for his second ATG they briefly raised it to 300 mg/day during his treatment. They were also able to give him much less prednisone than they had the first time, since they had a better idea of how he would respond to it. As a result, his recovery time was much quicker the second time around.

[paulaespada]

Originally Posted by Lisa V

Paula, for the last 3 1/2 years, he has been taking 175 mg of Gengraf per day (100mg in the morning, 75mg in the evening). He weighs about 175 lbs, so about 1 mg/lb of body weight? This is somewhat less than the maximum therapeutic dose, but he can't tolerate any more for very long without it affecting his kidneys. He has to drink LOTS of water too, which was hard to get him to do at first, but now that he's seen the results he's gotten used to it.

They initially started him out at 900 mg/day, which was much too high, and he had lots of unpleasant side effects. Over the next several months we gradually lowered it to 200 mg/day, but when he went in for his second ATG they briefly raised it to 300 mg/day during his treatment. They were also able to give him much less prednisone than they had the first time, since they had a better idea of how he would respond to it. As a result, his recovery time was much quicker the second time around.

Lisa

We'll have an idea.

1st and 2nd ATG, Jorge has maximum of 300 mg (150 twice/day).
Now he is on 200 (100 mg twice/day).
Before ending it he was on 50mg/day.
Jorge weights about 160lb.

During fisrt mounths Doctor has cyclosporine serum dosage every 2 weeks to determine if it's on a right or toxic level.

Thank you for the input