APML (a.k.a APL) info

kiwi24 · Posted: Mon Jul 28, 2008 4:29 pm Post subject: APML (a.k.a APL) info

Hi there,

I am a New Zealander diagnosed with APML (a.k.a APL) leukemia in Jan this year. I have been through 4 rounds of chemo and am in full remission (YAH!). I am about to start on maintenance chemo which I am told will be for about 18-24 months of taking drugs.
As APML is fairly rare I have not spoken with any-one with it and would like to, all the leukemia patients I have met have had AML which appears to have a different treatment protocol. I especially would like to know about the long term affects.

Thanks

brainman · Posted: Mon Jul 28, 2008 8:57 pm Post subject: Re: APML (a.k.a APL) info

Hi kiwi24. I am very sorry that you have this rare for of Leukemia. I am not sure we currently have anyone with that specific type of Leukemia. My father died due to complications of ALL so at least to a degree I know what you must be going through. We have many members who are familiar with AML, CLL, CML.... the whole alphabet of Leukemias. Now we can add APL to the list.

You are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

cminich · New User Joined: 17 Apr 2007 Posts: 7 Location: Owasso, OK

My husband died of APL at age 38. He went through one round of chemo and chrashed 3 days into his next round. He was in remission when he died. There are alternatives to chemo. There is quite a bit of info on the Leukemia site:
http://www.leukemia-lymphoma.org/all_page?item_id=8459

If I can help any, let me know.
_________________
Cindy Minich
cindy_minich@yahoo.com

kiwi24 · Posted: Tue Jul 29, 2008 3:37 pm Post subject: Re: APML (a.k.a APL) info

Thanks for your kind words and the internet link. I will continue my research and contact you if i need info.

chiledude · New User Joined: 27 Apr 2009 Posts: 4

Hi Kiwi,

I had APL too and had a bunch of questions.

In summary: if you make it past induction and consolidation, you can relax. Maintenence is really not that bad (depending on what ATRA does to you). Maintenence is basically to reduce your odds of relapse. Odds of relapse are hard to calculate because they are so low.

As far as long term side effects: low WDC, low platelet count, low sperm count. None of them are really a big deal.

Out of curiosity, are you taking Vesanoid or the generic ATRA? How much does it cost there?

kiwi24 · Posted: Tue Apr 28, 2009 4:21 pm Post subject: Re: APML (a.k.a APL) info

Thanks for the info, it is always in the back of your mind wondering if it will return. As much as I try to get on with my life, it nags away at you.

I get Vesanoid ATRA, and we are lucky here in NZ we don't have to pay for cancer treatment through our public health system (except in our taxes of course), so my treatment has been free. I would hate to think how much it actually costs.

Thanks for your reply and keep in touch.

KiwiChick

	Cancer Forums Forum Index -> Leukemia Forum	All times are GMT - 5 Hours
Page 1 of 1

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others