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Newly AML Diagnosed 08/27/2010

cassandramariea
Posts: 1
Joined: Sep 2010

My name is Cassandra, I was diagnosed on 08/27 of this year. Been thru the week of Chemo (3 & 7). I am just writing to see if there is anyone out there that has been thru this that can share. I was told that my bm biopsy came back as Leukemia with dysplasia. They subtype I was told didn’t fit in with the traditional subtypes, it’s not a “good” one but not one of the bad ones. I’m somewhere in between. I’m not 100% sure what that means. However the doctor did say I would probably have to get a stem cell transplant. He doesn’t think that the chemo alone will keep me in remission, but the stem cell will ensure remission. I know my husband is having a really hard time taking all this in and well honestly so am I a little. This is why I’m reaching out. I want to know if anyone has had a similar diagnosis and what they went thru. I’m still in the hospital recovering from my 1st round of chemo… I’m only 2 weeks in. I do have a wonderful supportive family, friends and colleges at work. Which I am sooo thankful for! Any suggestions on what helped you get thru would be nice. I look forward to hearing from everyone!! Thank you in advance.

rathgirl's picture
rathgirl
Posts: 147
Joined: Jun 2010

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

gmh146
Posts: 1
Joined: Sep 2010

Hi Cassandra,

My husband was just diagnosed in July with APL, so we understand your feelings completely. Its hard not only on you the person undergoing the treatment but also your family.
Hang in there, try to keep a positive attitude and always be there for each other. I am glad you have a familial support system in place, that is very important.
We wish you well as you continue with your treatment, please keep us posted on your status. You and your family will be in our prayers.

Sincerely,
Laurel & Jerry

imankles
Posts: 2
Joined: Oct 2010

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.

nanstevekemp's picture
nanstevekemp
Posts: 4
Joined: Dec 2010

I was just recently diagnosed 10-27-10. I just finished my first Post Remission treatment, thank God. Maybe you can tell me what I am in for the next few rounds. How are you feeling? How was consolidation? Did you need the bone marrow transplant?

ReubenC
Posts: 16
Joined: Feb 2011

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.

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