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My oncologist told me this was an environmentally caused leukemia. The 2 known causes are exposure to the atomic bomb or an exposure to benzene. There may be other causes but these 2 are known. I have always been told and heard from many that this is a "good" type to get. The cure rates are much higher with this type. I believe when I was diagnosed they said it was a 60% chance of success.

There is a website called benzene.org. Hopefully that can better explain the chemical to you. I got some info on APL from the leukemia lymphoma society too. But they seem to always place APL under AML. APL is a subtype of AML. I personally wish they would list it on its own rather than wrapping it up with another type as far as getting info goes.

At the time I was diagnosed my clinic and hospital had not seen a case of APL in many years. But when i was diagnosed about 6 other people came in suddenly with APL. And then, again it dropped off leaving this "cluster" group of us who got sick.

In my mind, and this is without proof as yet, we all must have been exposed somewhere. Maybe we have a tie somehow, some place we all were, some place we all visited, or maybe an area we all worked at or lived.

I recently discovered there had been a major chemical spill across the road from a place I worked at many yrs. And also they had been dumping tons of this stuff in a creek nearby as well. I have someone now researching if this could be a possibility. Hopefully they will try to contact those diagnosed when I was and maybe find a link amongst us even if this were not the exact cause.

The benzene link may be something you might ask about. Or possibly see if there is a "cluster" of people. This is a rare type of leukemia from what I've been told so you may want to do some digging.

I went thru many rounds of ara-c and idarubycin intravenously. I was also put on an oral agent called ATRA. Also known as TRETINOIN OR VESANOID. All the research I have done shows that doctors are not truly sure how long to keep a person on ATRA.

I have heard of people going on and off ATRA for weeks at a time, I have heard do one straight year only, etc. It varies. My doctor kept me on it 4 yrs. He felt as long as I could handle the side effects it was better to play it safe and stay on.My side effects personally were extreme leg cramping where my legs felt pulled and twisted about. I was nauseous and tired. I had painful nasal sores. But I think the side effects vary. I thought the side effects were worth staying on.

The intravenous chemo was the worst for me. I was in the hospital weeks at a time for IV chemo, transfusions, or blood infections. I was throwing up 24/7 and I hurt so bad. I was using tons of morphine to escape the pain but people react differently to chemo.

One thing I might suggest. My doctor put in a Groshong catheter in my chest. This particular catheter had 2 ports to it. Meaning, there was ultimately 1 tube in my chest that split in 2 at the outside. Anyway, my point is, I learned to love that thing. It is designed to administer chemos or other drugs just like an IV. The 2nd port they could use to draw blood. That saved me a lot of pricking. There are many types of catheters and some can be "permanently" placed in the arm as well. I'm not sure I explained that too well so ask the doc more about it. But its like an IV.

I hope I was able to give you some answers to work with. And I am truly sorry to hear of another soul caught offguard by a terrible disease. I'll pray for your family to be strong and your brother in law to be even stronger.

Any more questions? Feel free to ask away.

Oh..one more thing. When I was diagnosed they did a bone marrow test to determine my type of leukemia. I did not fare well with that. Down the road, my doc decided to do a different type of test. A blood test. This is a special test that looks for the genetic marker indicating the leukemia is still there. They send this test up to Vancouver, BC Canada. I think it is called RAR/PCR. They test me every 6 months or so this way and it takes weeks to get the results.
[QUOTE=chipples]My oncologist told me this was an environmentally caused leukemia. The 2 known causes are exposure to the atomic bomb or an exposure to benzene. There may be other causes but these 2 are known. I have always been told and heard from many that this is a "good" type to get. The cure rates are much higher with this type. I believe when I was diagnosed they said it was a 60% chance of success.

There is a website called benzene.org. Hopefully that can better explain the chemical to you. I got some info on APL from the leukemia lymphoma society too. But they seem to always place APL under AML. APL is a subtype of AML. I personally wish they would list it on its own rather than wrapping it up with another type as far as getting info goes.

At the time I was diagnosed my clinic and hospital had not seen a case of APL in many years. But when i was diagnosed about 6 other people came in suddenly with APL. And then, again it dropped off leaving this "cluster" group of us who got sick.

In my mind, and this is without proof as yet, we all must have been exposed somewhere. Maybe we have a tie somehow, some place we all were, some place we all visited, or maybe an area we all worked at or lived.

I recently discovered there had been a major chemical spill across the road from a place I worked at many yrs. And also they had been dumping tons of this stuff in a creek nearby as well. I have someone now researching if this could be a possibility. Hopefully they will try to contact those diagnosed when I was and maybe find a link amongst us even if this were not the exact cause.

The benzene link may be something you might ask about. Or possibly see if there is a "cluster" of people. This is a rare type of leukemia from what I've been told so you may want to do some digging.

I went thru many rounds of ara-c and idarubycin intravenously. I was also put on an oral agent called ATRA. Also known as TRETINOIN OR VESANOID. All the research I have done shows that doctors are not truly sure how long to keep a person on ATRA.

I have heard of people going on and off ATRA for weeks at a time, I have heard do one straight year only, etc. It varies. My doctor kept me on it 4 yrs. He felt as long as I could handle the side effects it was better to play it safe and stay on.My side effects personally were extreme leg cramping where my legs felt pulled and twisted about. I was nauseous and tired. I had painful nasal sores. But I think the side effects vary. I thought the side effects were worth staying on.

The intravenous chemo was the worst for me. I was in the hospital weeks at a time for IV chemo, transfusions, or blood infections. I was throwing up 24/7 and I hurt so bad. I was using tons of morphine to escape the pain but people react differently to chemo.

One thing I might suggest. My doctor put in a Groshong catheter in my chest. This particular catheter had 2 ports to it. Meaning, there was ultimately 1 tube in my chest that split in 2 at the outside. Anyway, my point is, I learned to love that thing. It is designed to administer chemos or other drugs just like an IV. The 2nd port they could use to draw blood. That saved me a lot of pricking. There are many types of catheters and some can be "permanently" placed in the arm as well. I'm not sure I explained that too well so ask the doc more about it. But its like an IV.

I hope I was able to give you some answers to work with. And I am truly sorry to hear of another soul caught offguard by a terrible disease. I'll pray for your family to be strong and your brother in law to be even stronger.

Any more questions? Feel free to ask away.

Oh..one more thing. When I was diagnosed they did a bone marrow test to determine my type of leukemia. I did not fare well with that. Down the road, my doc decided to do a different type of test. A blood test. This is a special test that looks for the genetic marker indicating the leukemia is still there. They send this test up to Vancouver, BC Canada. I think it is called RAR/PCR. They test me every 6 months or so this way and it takes weeks to get the results.[/QUOTE]
hello,
my husband is apml sences 10th feb 20005. he got CR after 1st camo plus ATRA,
after that our doc stopped ATRA . on 6th of this month he finished his 3 rd camo of matoxanto and etoposide.can u tell me that what would be the effects of not taking ATRA with camo? or what r the chances of recurence of apml . still we do not get any reasen of this diseases. he is 45 yr old.
i impressed of ur knowladge.pl let me know if u can send me more details of ATRA . thank u .





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