Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
I'm so very sorry to hear that your husband was diagnosed with AML, but glad that he has come through the 1st round of chemo well with great numbers.
My circumstances are somewhat different to your husband, so I'll just give you some backgd info. Leading up to my experience with azacitadine. I was diagnosed in June 2012 with FLT3 AML at age 39yo, had induction then 1 consolidation chemo, then a related donor BMT in sept 2012. Relapsed in feb2013 and salvaged with FLAG chemo, Sorafenib & my 1st donor lymphocyte infusion (DLI). Impending relapse (falling chimerism) in July 2013-salvaged by Sorafenib, a 2nd DLI and azacitadine. We decided to continue on the Azacitadine for at least 24 cycles (2years). This was an arbitrary number chosen by my specialist but he thought if it could keep me in remission for 2 years that would give me my best chance for survival and possible cure. Apart from more chemo (which carries significant. Toxicities, & which had already failed to kill the leukemia cells), Azacitadine was my only other viable option at the time that we could access (albeit privately and off label use). There were a few studies at the time suggesting its usefulness in cases of relapsed AML esp. In people who may not tolerate more chemo or a BMT eg. Elderly. I believe that in the studies the azacitadine was only used for 4 cycles with a watch & wait approach ie. another 4 cycles if you were showing signs of relapse again. We decided we'd keep it going continuously rather than a watch & wait approach.
Here in Australia, Azacitadine is funded and approved for use in relapsed AML (if blast count is less than 30%). It's also used in MDS (myelodysplastic syndrome) to help prevent secondary transformation to AML. So there is some history for its use with relation to AML and I can see why they have suggested it in your husband's situation, and to keep it going for 1 year.
I just recently completed my 20th cycle of Azacitadine (it's almost 2 years!). When I was told I'd need to stay on it for 2 years, it was disheartening and scary not knowing what effect it would have on me. I have it as an outpatient (which is the great thing!) 7days out of every 28days (so about 1 week every month). You can have it as a subcutaneous (into the fatty tissue) injection or intravenously esp. If you have a central line in for convenience. I'm told the subcutaneous route can result in a lot of bruising over time, so if you don't have a lot of fat around like me, it's probably not the ideal route. Fortunately I had a permanent line to administer it through. Saved on lots of needles! It is very quick to give if subcut, and only about 30-40 mins including time to flush the line if given I.V. I did vomit badly after my 1st dose, but now I just take zofran an anti nausea med (1 dose is enough for me) when I have the chemo dose and I'm fine. I just feel a little bit tired during the weeks I have the chemo but I can still get up and do things. It does drop my counts a bit which sometimes are slow to go back up but they do eventually. I have 2 Gcsf injections at the end of each cycle to help my neutrophils recover a bit faster to reduce the likelihood of me picking up infections. I also have monthly intragam infusions (immunoglobulins) to help reduce the number of infections I was coming down with too.(mainly respiratory for me). However, I may be more prone to infections than yr husband bec. of the reduced immunity state caused post-transplant.
My specialist says he has a patient whose been on aza for over 3 years now for MDS. If your husband does really well with it, an option later down the track may be to increase the interval between chemo cycles, to give the body a bit longer to recover inbetween cycles. That is where I am at the moment - we are increasing to 6-8 weekly cycles.
I've had a wonderful specialist who has been willing to go out on a limb for us and try some innovative approaches. We think it might be helping to keep me in remission, by keeping whatever leukemia cells I might still have, to a low enough level, that my immune system (graft vs leukemia effect from the transplant) is able to clear the rest. In a sense debulk/ decrease the leukemia cell load that my immune system has to deal with.
I hope this information helps and has not overwhelmed you too much, but I wanted to give you as much as possible. I hope it helps allay some of your fears about the drug. I do hope it helps tremendously in your husband's situation. It does offer you a much better quality of life than standard inpatient high dose toxic chemotherapy, which is the best thing I can say about it & the fact that it may be helping to keep my leukemia at bay. Wishing your husband will be on the course to a full recovery too. Hope xxx
Here are a few discussions about Vidaza
http://www.dailystrength.org/c/Acute_Myelogenous_Leukemia_AML/forum/16695316-vidaza-maintenance
http://www.dailystrength.org/search?q=vidaza&t=discussion&community=Acute+Myelogenous+Leukemia+%28AML%29&s=30
http://www.dailystrength.org/c/Acute_Myelogenous_Leukemia_AML/forum/20311631-evolving-view-aml
Praying for you and your hubby
Julie
There have been several papers written about use of azacitadine in many different situations. This also includes the treatment of AML in elderly people who may not be suitable for intensive chemo or BMT. Because azacitadine is less toxic than standard conventional chemo it is sometimes considered for use in older patients who may not tolerate or be eligible for intensive chemo or BMT, as it may help.
I hope it does work miracles for your husband xxx