It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Leukemia Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 01-26-2005, 01:05 AM   #1
Junior Member
(female)
 
Join Date: Jan 2005
Posts: 13
chipples HB User
Acute Promyelocytic Leukemia

I was diagnosed with Acute Promyelocytic Leukemia 4 yrs ago. This is an environmentally caused leukemia. I would like to hear from others with this type of leukemia or if you know someone who has it as well.

Thank You

 
Sponsors Lightbulb
   
Old 01-30-2005, 10:12 PM   #2
Newbie
(male)
 
Join Date: Jan 2005
Posts: 2
aplnhouston HB User
Re: Acute Promyelocytic Leukemia

My brother-in-law was just diagnosed with APL on January 29,2005.I didn't realize it was an environmental cancer.What type of environment causes this?How was your APL treated?I just have so many questions and concerns.Any information you could provide would be very much appreciated.Anybody who can tell me anything they know about APL would really help.Thank you

Last edited by aplnhouston; 01-30-2005 at 10:14 PM.

 
Sponsors Lightbulb
   
Old 01-31-2005, 06:43 PM   #3
Newbie
(male)
 
Join Date: Jan 2005
Posts: 2
aplnhouston HB User
Re: Acute Promyelocytic Leukemia

Thank you very much for taking the time to reply,I really appreciate it.I think he is gonna start chemo in the next day or two.So how long did it take you to go into remission?How long have you been in remission,any relapses?Thank you for the prayers and you will be in ours as well.If you don't mind as he goes through his treatment if we have any questions I'll post on here.Thanks again.

 
Old 02-03-2005, 02:14 PM   #4
Newbie
(female)
 
Join Date: Feb 2005
Posts: 1
Rupe HB User
Re: Acute Promyelocytic Leukemia

I was diagnoses with Acute Promyelocytic Leukemia (APL) in May 2001. My local hospital didn't have the resources to treat APL, so I was sent to the Cancer Institute of New Jersey. There I selected to be a part of a clinical trial. I was admitted to Robert Wood Johnson University Hospital for induction therapy and was an inpatient for 30 days. I was treated with chemotherapy, daunarubicin, Ara-C, and ATRA. The next phase of the treatment was 10 weeks of IV arsenic trioxide (5 days a week with a week break after 5 weeks). Following the arsenic, I had two phases of hospital inpatient chemo as part of the clinical trial.The next phase was for one year of two oral medications along with ATRA.

I went back to work full time after only nine months of leave of absence. I have been free of leukemia for three and one-half years. The treatment was not horrible. I was given great meds for vomiting. I did have infections and my white blood cells at one point in the induction therapy went to 0. I got over the infections. I regained my strength. After November 2001 I drove myself to the Cancer Institute (1 1/2 hours, one way). I now have bone marrow biopsy only yearly now. I feel really well. My prognosis is very favorable for a cure. I highly recommend this clinical trail for those diagnosed with APL. It works. Please keep in mind, as the physician said to me, "All leukemia is awful, but if you have to get leukemia, ALP is the one to get." Approximately 90% of its victims are CURED!

 
The following user gives a hug of support to Rupe:
hueli (07-01-2011)
Old 03-16-2005, 06:16 PM   #5
Newbie
(female)
 
Join Date: Mar 2005
Posts: 2
alice23 HB User
Re: Acute Promyelocytic Leukemia

My boyfriend has APL since January 14th.He already ended his second round of chemo,and he is doing very good.I just want to ask if pacients with this will be cured for good,i mean if it is possible that my life and his life will be like before all this.I am very scared,i am opthimistic but also scared because i don't know too much about this type off leukemia.We are from Romania ,his doctor also told us that is the easiest form of leukemia but i am still scared,i just don't want nothing bad happened to my boyfriend.When we first went to a hospital he had 2700 wbc,hmg 11 and 20000 plateletes,so it was very bad but he is in full remision after the first round of chemo and his doctor told me that he has no more blasts in his blood.I just want to know from people who heared about APL if they know something about prognosis,or if pacients may be cured completely.Thanks.

 
Old 03-16-2005, 07:59 PM   #6
Newbie
(male)
 
Join Date: Feb 2005
Posts: 4
penn65000 HB User
Re: Acute Promyelocytic Leukemia

Quote:
Originally Posted by alice23
My boyfriend has APL since January 14th.He already ended his second round of chemo,and he is doing very good.I just want to ask if pacients with this will be cured for good,i mean if it is possible that my life and his life will be like before all this.I am very scared,i am opthimistic but also scared because i don't know too much about this type off leukemia.We are from Romania ,his doctor also told us that is the easiest form of leukemia but i am still scared,i just don't want nothing bad happened to my boyfriend.When we first went to a hospital he had 2700 wbc,hmg 11 and 20000 plateletes,so it was very bad but he is in full remision after the first round of chemo and his doctor told me that he has no more blasts in his blood.I just want to know from people who heared about APL if they know something about prognosis,or if pacients may be cured completely.Thanks.
I have APL, diagnosed October 2004. I've been through induction (idarubicin and Vesanoid/ATRA) and two rounds of consolidation (ATRA+idarubicin first, then ATRA+mitoxantrone second). The third round will be idarubicin and ATRA. I was in remission after induction (though I haven't gotten the PCR back yet).

The most recent protocol, which can be found in the journal "Blood," had a 90%+ disease free survival ("cure") after 5 years. They also studied a few hundred patients. ARA-C was thought to be unnecessary with APL. I would ask your oncologist to consider the protocol in Blood Journal researched by Martin Tallman (at Northwestern in Chicago) and a Dr. Sanz in Spain -- the PETHEMA Group. This protocol, the 1999 version, has 5 year data with over 90% chance of cure. This is the protocol I'm getting, but it is NOT the protocol yet widely used in the U.S. (I supposed the study has to have time to be digested by the Oncologists -- fortunately mine, at Columbia Presbyterian in New York, was up-to-date on the latest, proven protocols).

Search the internet for "APL and Tallman and Sanz" and you'll see the studies. You can purchase the 2004 article in Blood Journal for $25.00.

Best of luck. Things should be okay!

 
Old 03-17-2005, 07:47 AM   #7
Member
(female)
 
Join Date: Dec 2004
Location: Ma
Posts: 57
AngelBaby189 HB User
Re: Acute Promyelocytic Leukemia

My uncle was just diagnosed with this last week. he is currently up in a hospital in Boston, Ma. He is under going kemo. I feel so awful for him i cant beleive this has happend. It started out with what he thought was a chest cold. Went to the doctors to gets some meds and they didnt work. So after a few days he went back to get something stronger. He tried that but it still didnt work. Mean while his gums got really swollen it was hard for him to eat anything. He went back to the doctors a 3rd time and requested blood work to be done. After doing the tests they came back and told him his white blood cell count was really really high. They told him to go to a hospital in Boston,Ma to go to the emergency room. He went there and they ran tests to confirm that he does have Acute Promyelocytic Leukemia. The poor thing is undergoing Kemo right now. He wil be in the hospital for 30 days until he gets better. Do people always lose there hair from kemo? Went does it start to fall out? How quick or fast does it come out. He is worred he will lose his hair. He is only 25 years old. I dont know why this happend to him or to anyone.

 
Old 03-29-2005, 12:50 PM   #8
Junior Member
 
Join Date: Jan 2003
Location: Des Moines, IA
Posts: 40
randym431 HB User
Re: Acute Promyelocytic Leukemia

I dont know much about APL, but a friend of mine just got CML. Benzene is said to be the cause of that too. And the smoke from cigs contain benzene (guess smoking IS really bad for you).
CML is one of the leukemia's that there are a few "magic bullet" drugs to treat.
Hope APL has simular hope.

 
Old 03-30-2005, 08:11 PM   #9
Junior Member
 
Join Date: Nov 2003
Location: Ohio
Posts: 47
Jenn4USA HB User
Re: Acute Promyelocytic Leukemia

QUESTION IF YOU CAN HELP PLEASE; My father was diagnosed with AML, last year, which he died of about 8 weeks later, they felt that his leukemia was a result of Agent Orange Exposure in Vietnam? Is this the same type of environmental cancer you are referring to?

 
Old 04-29-2005, 03:47 PM   #10
Newbie
(female)
 
Join Date: Apr 2005
Posts: 3
sjdmal HB User
Re: Acute Promyelocytic Leukemia

My husband's APL has returned for the 4th time. He has had it in 97, 99, 01 and then, after nearly 4 years, again just a month ago. He has done a ton of different chemo treatments over the past nearly 8 years including many listed on this board. He was most recently treated with ATRA and that protocol put him into remission in 01. Unfortunately, it didn't keep him there. He is now being treated with arsenic although it was supplemented with one dose of Mylatarg (spelling). I don't think he was exposed to environmental hazards that caused this but one never knows. Is anyone on this board being treated with arsenic? I have read that APL is very treatable and curable. Any help and support would be very much appreciated. We are very worn out with fighting this awful disease and need support to get thru it this time.

 
Old 05-11-2005, 07:28 AM   #11
Newbie
(male)
 
Join Date: Apr 2005
Location: MumbI
Posts: 2
bcjoshi28 HB User
Re: Acute Promyelocytic Leukemia

hi,
i m indian . my husband is apml patient . he got his cr after first camo.just now he competed his 3rd camo. i like to ask few things regarding atra. his doc has stop atra after 1st camo.what would be the effect of it ? or what r the chances of relapce?
if u can guide us . i pray for ur good healh. thank u very much.

 
Old 05-11-2005, 11:15 AM   #12
Newbie
(male)
 
Join Date: Apr 2005
Location: MumbI
Posts: 2
bcjoshi28 HB User
Re: Acute Promyelocytic Leukemia

Quote:
Originally Posted by 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.
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 .

 
Old 06-12-2005, 08:38 PM   #13
Newbie
(male)
 
Join Date: Feb 2005
Posts: 4
penn65000 HB User
Re: Acute Promyelocytic Leukemia

That doesn't sound quite right. I have APL, and from what I've heard it shouldn't come back after treated (unless there are other genetic abnormalities). Perhaps you should check at Memorial Sloane Kettering (Dr Mark Heany is an expert), and make sure you're getting the right treatment. Or try Dr. J. Gregory Mears at Columbia. Both are doing good work, with Dr. Mearns using the Pethema protocol (developed last year and over 90% cure rate). ATRA/Idarubicin then consolidation with Ida, Mitoxantrone, and Ida. Then pills for two years.

 
Old 06-12-2005, 08:40 PM   #14
Newbie
(male)
 
Join Date: Feb 2005
Posts: 4
penn65000 HB User
Re: Acute Promyelocytic Leukemia

See my reply to this on next page.

 
Old 06-13-2005, 01:26 PM   #15
Newbie
(female)
 
Join Date: Apr 2005
Posts: 3
sjdmal HB User
Re: Acute Promyelocytic Leukemia

My husband had leukemia four times, in 97, 99, 01, and 04. They were all APL. So you can get recurrences - could be because of genetics in that the chromosomal abnormalities kept switching back, creating the leukemia again and again. He has been treated by mylotarg and ATRA. Most recently, he was treated with arsenic.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Is acute lymphoblastic leukemia hereditary? kasi316 Leukemia 6 07-11-2011 09:29 PM
My Father Has Acute Myeloid Leukemia! Whats Does This Mean!!! acuteleukemia08 Leukemia 10 12-31-2010 12:15 PM
Acute myelogenous leukemia (AML) Yessan Leukemia 8 12-28-2010 01:57 PM
acute myeloid leukemia, m1 with blood clots in both legs family12 Leukemia 0 12-30-2007 09:21 AM
Acute Leukemia kee4u Leukemia 3 09-29-2005 01:05 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 08:20 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!