Newly AML Diagnosed 08/27/2010

hi.
hi im krysten. hi im krysten. i was diagnosed with AML M3 in december '09. i went through the same treatment as u did (3&7) then spent 3 more weeks in the hospital recovering from the chemo.

as for suggestions on getting through this is to just be positive. it is what it is. it sounds like u have a lot of support there with you. i do recommend checking out the chat. it is full of advice. it is a place to vent, complain, and just have fun. let me tell ya that it is an amazing place. it feels good talking to people who know what you are going through. if u have any questions and such feel free to ask.

good luck and ill be thinking of you!
krysten AKA, rathgirl

Hello
Hello Cassandra, I was diagnosed with Aml in 9/06, I can understand all the anxiety you are feeling. The one great thing that we both have is a great support group, and I think and feel that is key. there are so many people out there that can answer any question you have, ask your dr everything and anything that is what they are there for and if they dont know or cant help you have them point you in the right direction to get the answer/help your need. I know things are tough right now but you have to stay strong, I am one of the lucky ones that responded well to treatment and have had multiple negative bone marrow tests. the first year of treatment was hard, I was in the hospital more then home, my longest hosp stay was 8 weeks, which was over thanksgiving/christmas,new years, it stunk but my support group of family/friends and hosp staff is what kept me strong. There are lots of sites that can help you, carepages is where i meet some great people that have gone thru alot of stuff that I have and that you will. Be strong Cassandra, please write me any time you have a question or just need someone to chat with, we are all here to suport each other.

Spcifics about your diagnosis
Hello Cassandra, has your doctor been able to give you any specifics on your subtype? I noticed a couple of comments about APL, which is considered one of the most "odd" types of AML - however that is not all a bad thing.

I was dx in Nov 07 and have recently celebrated 3yrs of remission. While APL (or AML:M3) is the most rare of AML subtypes, it is also the most "curable". The survivor ship of APL is the highest of all AML's with today's treatment using ATRA.

The protocol used in my treatment was newly introduced at the time of my dx. It involved the 3/7 for induction, then 2 5wk rounds of Arsenic and ATRA before the 2 rounds of consolidation. Maintenance consisted of 1 year in combination with ATRA, MP6 (mercaptopurine), and MXT (methotrexate).

I don't know if this information applies to you or not without the specifics of your dx, however if it does I would suggest speaking to your doctor about the protocol I mentioned if you do have APL and are not using it. There may be factors on why your doctor would not put you on that specific protocol, however lack of knowledge should not be one of them. I got lucky, my attending OC is one of the leading experts of APL in the nation. Given how rare APL is, he is often consulted and has seen a lot of success using the timing of medication in method above.

Many Dr's won't use Arsenic as part of consolidation, only in a relapse and while that can be effective treatment, more success has been seen when given in consolidation with fewer relapse case. Initial treatment is difficult enough to deal with, I for one would rather choose a path that offered less chance of the occurrence.

I can find the exact name of the protocol if you would like, I know I have it in my notes here somewhere.

I hope your treatment is going well in any case. Be strong, be positive, endure, the challenge is great. Always remember, you are worth the fight for survival.