APL

Laurabell

Hi,I'm 23 and I was diagnosed with APL in Sept 04. I had three rounds of chemo. and am now on Atra for 1 wk on and 1 wk off for one year. I am doing pretty well. I wondered what symptoms other patients have had from Atra? I know I have severe headaches, but my dose got cut in half, and now it seems okay. Although I have this constant pulsing in my ear and it's sooo frustrating. I wondered if anyone else had a noise in their ear from the ATra? I'm also curious to hear from anyone who has had APL, since I am worried all the time that it will come back. Does anyone know the rough percentage of a chance of a relapse? I've heard so many numbers...

MiraT

Hi Laurabell, sorry to hear about your diagnosis but I'm glad to hear that things are generally going pretty well. I have AML. APL of course is a subtype of AML, but that's not what I have so I don't know a whole lot about APL. I have read that it tends to have a better prognosis than the other subtypes of AML, which could be for a lot of different reasons. I would encourage you to check on the Leukemia Lymphoma Society website (lls.org) for more information about ATRA. They also have a discussion board with very helpful people on it, it's a great resource. I am sure that the ACS also has a lot of information available either on this site or if you call them. Good luck with everything! Keep fighting the good fight.

Mira

Laurabell

MiraT said:

Hi Laurabell, sorry to hear about your diagnosis but I'm glad to hear that things are generally going pretty well. I have AML. APL of course is a subtype of AML, but that's not what I have so I don't know a whole lot about APL. I have read that it tends to have a better prognosis than the other subtypes of AML, which could be for a lot of different reasons. I would encourage you to check on the Leukemia Lymphoma Society website (lls.org) for more information about ATRA. They also have a discussion board with very helpful people on it, it's a great resource. I am sure that the ACS also has a lot of information available either on this site or if you call them. Good luck with everything! Keep fighting the good fight.

Mira

Thanks for the info:) I will check that out!
-Laura

niavas

hi, im 24 and just relapsed with apl in december. Unfortunatly our type of cancer has a somewhat high rate of relapse, the positive however is Apl is highly treatable, I was unresponsive to Ara-c and idarubisin the second time so my hemotologist placed me on Arsenic trioxide i was one of the first in my state to use it. and it work with low side effects. 2 years ago when i was first diagnosed, it was still in clinicals here. so they have new stuff comming out all the time, hope this helps
Jenn

Laurabell

niavas said:

hi, im 24 and just relapsed with apl in december. Unfortunatly our type of cancer has a somewhat high rate of relapse, the positive however is Apl is highly treatable, I was unresponsive to Ara-c and idarubisin the second time so my hemotologist placed me on Arsenic trioxide i was one of the first in my state to use it. and it work with low side effects. 2 years ago when i was first diagnosed, it was still in clinicals here. so they have new stuff comming out all the time, hope this helps
Jenn

Hi Jenn, I sent you an email as well but not sure if it went through. I'm so sorry to hear that you had a relapse. If you don't mind me asking how did you find out that it had come back? And have you heard the chances for relapsing with APL? YOu said they are high? Because I've heard so many different things. Also, have you been taken ATRA? If so, what side effects have you experienced? Thanks so much for all you info.!
-Laura

Genet

Hi Laurabell. I am turning 23 in May and was also diagnosed with APL in Aug.02. It was tough. I was in the hospital for a month and a half. Had 3 rounds of chemo and then was on ATRA, 6MP, and Methotrexate for the last 2years. As of Jan. 1st of this year I have been off everything and as of today am in a full remission!!! My doctor has told me that it is NOT likely for it to come back. He said 1 in 10 usually relapse, but its not likely. The only side effects that I got from the ATRA were insane migranes. They were so intense that I couldnt do anything and nothing helped them go away. I wish you all the luck in the world and will be thinking of you often. Keep me informed.

Laurabell

Genet said:

Hi Laurabell. I am turning 23 in May and was also diagnosed with APL in Aug.02. It was tough. I was in the hospital for a month and a half. Had 3 rounds of chemo and then was on ATRA, 6MP, and Methotrexate for the last 2years. As of Jan. 1st of this year I have been off everything and as of today am in a full remission!!! My doctor has told me that it is NOT likely for it to come back. He said 1 in 10 usually relapse, but its not likely. The only side effects that I got from the ATRA were insane migranes. They were so intense that I couldnt do anything and nothing helped them go away. I wish you all the luck in the world and will be thinking of you often. Keep me informed.

Hi, Genet,
Thanks so much for responding to my posting. It's good to hear from other young people who have been through the same experience. I am so happy to hear that you are doing great. I also just had my first bone marrow checkup since finishing all my treatment and I am still in remission. So that was great news. My doctor also said that he thinks it is unlikely that it will come back. It's very comforting to hear, yet I still worry a lot. But I'm adjusting and trying to stay positive. I feel soo happy and lucky to have made it through this. Now I am on ATra until August. Then I'll be finished for good, with bonemarrow checkup every 3 months for the next few years. Do you hvae these? Anyways it's great to hear about you, and stay in touch! Let me know how your doing.
Thank you!
Laurabell