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Sister with AML - 1st round chemo didnt work - they say its aggressive

tiggermafia
Posts: 8
Joined: Feb 2010

my sister was diagnosed 1week 6 days ago with AML. the doctors moved very quickly and within 3 days of her diagnosis she was on chemotherapy.. she is 19 so the 1st round i assume was very strong.. they did a blood test yesterday and they didnt like what they saw and said we need to do more chemo as soon as her WBC is up and a bone marrow transplant is in her near future.. im so confused to all of this.. she is young and extremely fit... they said that we wont know her subtype until it grows....which also confuses me.. i just want her to get better.. she is so positive and strong right now but just not knowing what every day can bring is so hard.. we have done cheek swabs to see if we ( 3 sisters) are matches.. and that also takes 2 weeks so the waiting is also very difficult.. she is mixed ( caucasian and african-american) so they say that in the donor listing it may be hard to find someone... i know im looking too far ahead but i cant help it..
has anyone been in a similiar situation or can offer any advice at all ?

Luna6517's picture
Luna6517
Posts: 11
Joined: Feb 2010

tiggermafia,

I'm sorry to hear about your sister's illness. All I can tell you is that I am a survivor of AML, diagnosed when I was 11. My brother was my bonemarrow donor, and I am now over 11 years post-transplant.

There is a good chance that at least one of you will be a match for her, and related bonemarrow transplants have a pretty good rate of success.

Also, I obviously don't know what her doctors are telling you, or what they're looking for, but I can tell you that I underwent 3 rounds of chemo before my BMT. I've honestly never heard of only going through one round of chemo.

I wish I knew more, but I wish you and your family all the best.

mtbikernate
Posts: 31
Joined: Feb 2010

Hope things go well. AML is always aggressive. It hits hard and fast, and you have to hit it back harder and faster.

When I learned I had AML, I had a bout of flu that wouldn't go away about a year ago. Within days, I visited my local ER, got a diagnosis, was transported ~3hrs in an ambulance to Houston, and was placed into a drug-induced coma at MD Anderson.

I had my induction round of chemo while I was in a coma. 18 days later, after I was awake from the coma, I also got an intrathecal dose of chemo (directly into my spinal cord). I received a total of 7 regular rounds of chemo plus the intrathecal dose, and I will be getting a few doses of 'maintenance' chemo in the coming few months.

I went into remission sometime in April of 09.

I was also a very fit and healthy person. Trim build, mountain biker, hiker, canoer, and in the middle of a master's degree in environmental science.

It takes time to get the genetic tests done on the leukemia to find subtype. I ended up with type M2 and translocation between chromosomes 8 and 21. I was lucky...the form I got was common and treatable.

tiggermafia
Posts: 8
Joined: Feb 2010

hiya
thanks so much for the reply.. so much has happened since feb 6, crazy how every day brings something different but she took the first round of chemo really well and just finished her 2nd round.. my other sister is a full bone marrow match too which is great news as that is on the horizon apparently due to the aggressiveness of it all.. diid u have to go through with a bone marrow? my sis is only 19 but has been amazing about it all...which is really quite remarkable.. since u have been in remission, do you feel any different? any more tired or anything like that from before?

mtbikernate
Posts: 31
Joined: Feb 2010

I have not needed a bone marrow transplant...so far, anyway. I periodically felt tired while undergoing treatments because the chemo drugs made me severely anemic requiring regular transfusions. But, the more that happened, I noticed my body adapting to the anemia and it would take lower and lower red cell counts to make me tired.

I finished my full chemo in November, and I feel normal, aside from losing some strength and endurance due to muscle atrophy from my extended coma. But, I can go and work out in the gym, get my heart rate going, and all of that now. And aside from lifting lighter weights and running shorter distances, it's fine.

Now I am getting occasional "maintenance chemotherapy" which is supposed to be pretty low dose stuff...but it made me nauseous and I vomited early this afternoon. I gave up trying to do school work after that and just came home to watch tv and lay low.

I got my diagnosis at 28. I am 29 now. Since your sister is young, her doctors will probably hit her as hard as possible with the chemo drugs. Do you know which meds she's getting? I was on the FLAG protocol, which included fludarabine, cytarabine, gemtusiab (sp?) and mylotarg. I am part of a study looking at survival of that particular drug combination at MD Anderson in Houston. Those are the meds I finished with in November. The stuff I'm taking now is vidaza. I was also the most common subtype, M2. There are several subtypes depending on which cells are affected.

tiggermafia
Posts: 8
Joined: Feb 2010

thanks for the quick reply!
My sis is right now in the USA but we are frm the caribbean so i went up there the day we found out, was there for 9 days and had to come back home ( my parents stayed up obviously) so while i was all over the doctors finding out everything while i was there with her, i knew all the meds etc her first treatment (cytarabine, donnarubin and another one) but she did the 2nd round when i was home so i dont know exactly what treatments she was getting.. i go back on tuesday for a week ( very excited to see her again!!) and will find out more.. she was on a clinical trial but due to a mutation they took her off of it.. we dont know her subtype as yet still..its taking so long i find!!

im sorry about how you are feeling this afternoon.. i hope you feel better!!!!! are you able to then even though you are still on the maintenance chemo, function pretty much as you did before? i just dont want to give her a false timeline of how long this could be ... if you dont mind me asking, how long did it take for your hair to grow back? she had gorgeous blonde hair and she shaved it last week as it was bothering her as it was falling out and she seems "ok" with it, she has a good wig and has scarves and is making it work for her but just wondering how long it takes.. or if even the maintenance chemo affects it as well etc.

thank you again for your response!!! i appreciate it!

mtbikernate
Posts: 31
Joined: Feb 2010

sounds like she's getting something different than me.

the maintenance chemo I was getting (vidaza) made me feel pretty rotten for several hours. It'd be okay for a couple hours after the injection, but once it came on I'd feel bad for a few hours. I don't know how functional I'd be, but taking a nap was easier on me. Then after that time period, I was able to go to classes this evening (I am only taking one class, and it's scheduled one night per week for like 2.5hrs). but I got my last dose today. ugh, I didn't like that one, but apparently nausea/vomiting on day 1 is rare for that drug.

I lost most of my body hair, but only about half the hair on my face/head. I have thick hair on my head anyway, so only people who knew me could tell I'd lost any. I started growing it back before my chemo was done, even. the chemo started to affect me a couple treatments in, and so the time between treatments lengthened a bit. That's when I stopped losing hair and started growing it back. The texture was different, though. My hair was sorta straight and fine, but it came back coarse and curly. But even just a couple months after finishing the regular chemo, my hair was back to straight/fine. I don't know if/how the maintenance chemo will affect my hair.

The hair thing can be pretty variable. Some people lose almost all of it. Some people (like me) lose some mostly evenly. Others lose it in patches and just shave the rest off to be done with it. Some don't lose any.

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