APML (a.k.a APL) info

[kiwi24]

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]

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.

[cminich]

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.

[kiwi24]

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

[chiledude]

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]

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