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Friend's prognosis?



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03/24/2008 17:22
Arienne
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I have a friend who has AML. She is very private about it. I had to drag it out of her. She has not even told her children she has relapsed.. I am trying to find out if I can get info from other's experience on how she really is.

She was diagnosed a few years ago, and went into remission. She had a relapse a little more than 2 years after being declared in remission. She has been sick again for several months. She is 46, and gets the symptoms of aching joints regularly and has also had bleeding in her kidneys that has been difficult to control.

Recently, it was deteremined that she was not responding to chemo once a week, so they upped her to twice a week. I do not know which drugs they are using, but I know she gets to feeling so badly that once in a while she will skip an appointment as she is still trying to lead a normal life and not let her kids know she is sick again.

How long do they typically try twice a week before they determine whether or not that is helping at all? If it isn't, then what? Her daughter is a great kid, and I hate that she doesn't know it is possible she could lose her mother by the end of the year so she knows to cherish each moment. But all that I can find to read tells me she is probably not going to get better this time.

Thanks to anyone who can provide more info. I would like to know if I should try to talk her into fessing up to her daughter before it is too late for them to plan some good memories.

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04/14/2008 07:03
lcoberley
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I think that her family knowing that she is sick is not going to make it any easier as far as the what is coming, but I do think that it will make them appreciate the time they have with her a lot more.

I know that if Taylor had not been sick that yes I would have spent time with her, but I probably would have only spent half the amount of time with her. Sometimes you just get caught up in your own life that you don't stop to spend time with your family.

Talk to her about her family tell her to think about them. If she does not tell them what is going on and she dies in a month, then her family is probably going to have regrets. If she is not going to tell them then she needs to spend as much time with them as she can.


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04/14/2008 07:15
Arienne
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I think she is getting to a point where she won't be able to avoid telling them. The chemo drug she was getting already made her sick enough she had to schedule carefully to not be around her kids for a while after. She is not responding to that one, so they are changing to a stronger drug that may not only make her more nauseous, but also may make her hair start falling out. I don't think her daughter will miss that change.

I agree that them knowing will make a difference as far as the time they spend together. Her daughter is a socially active teenager, so she doesn't spend much time at home. I am sure if her mother passed suddenly, she may resent her mother for leaving her behind to feel guilty about not spending more time at home.

Still, what are the chances this is an unnecessary worry, and that she will respond to the stronger drug and get better?



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04/14/2008 07:32
lcoberley
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AML is a very agressive cancer. I wish that it was not. We spent eight months in Dallas at Children's Medical Center. They had a whole floor at the hospital dedicated to blood cancers. In that eight months only two were diagonised with AML, Taylor and Morgan. Both died. Taylor was in remission for six months, Morgan only three. I will admit though that childhood leukemia and adult leukemia is very different. I only know of one person who I work with that her husband had adult AML.

I thought Taylor would beat it with all my heart, but I still spend time with her and I am glad I did. If they know she is sick and they spend time with her, yes they will be very worried and emotional, but if she dies they will not have any regrets. If she lives, they will still have those memories. No they won't all be good ones, but no one will be able to ever take the good ones away.

She may not realize it now, but she is going to need their support. Hiding it is only going to make her more stressed thus making it harder for her to fight it. It will eventually come out. It would be better for her to hear it from her mother then someone else. Hair loss is something that she is not going to be able to hide.

You know these people, I don't so you are going to have to think of what you think is best for them. I am only telling you what I think.


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04/14/2008 07:45
Arienne
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I am really sorry for what you went through. I appreciate you trying to help me find my way in this. Not being family, I feel like an outsider on this issue that has no business trying to influence. But it really just seems to me from what I read that this is likely her last summer. I know if my mother died, and it seemed sudden to me, then I found out she could have given me more warning to prepare, I would be angry and resentful, and then guilty. Her daughter is a really good kid, and doesn't need that kind of depression on top of losing her mother to affect the rest of her life.

I hope it doesn't sound mean, but I hope she does start losing her hair for her children's sake. Then I won't have to make a decision whether to try to influence her or not.

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04/14/2008 09:08
lcoberley
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I think I would feel the same way too. I would defiantly want to know what is going on.

I don't know all of the stats on adult AML so I don't know what her chances are. I do know what AML can do to someone. I don't think saying that you hope her hair falls out is mean. She is going to have to face this.

My uncle (Taylor's dad) tried to ignore what was going on with Taylor. In the first month or so she looked just like she always did. But when she began to lose her hair I really think it changed him. It was like, this is really happening. I think he was more emotional then, then he was the day we found out she was sick. It is just one of those outwards signs that she really was sick.


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06/11/2008 23:24
seastar941
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your friend needs to tell her kids. i am a kid with cancer and i can remember when my mother had breast cancer. she was very open with everyone about it but after i was diagnosed all i wanted to do was be normal. well that didn't work for long. i tried not to tell my friends; i didn't want them to worry! then i realised they cared as much for me as i did for them and i felt it would be a betrayal of their trust to not say anything. they deserved better!!!

shes got to let her kids know. if she dies how will they remember her? the wonderfull mother who didn't let them know she was dieing? or the wonderfull mother who was open and honest strait to the end? which would you like her kids to think of as their role model? and they will think on it, one way or another. when they grow older and have to make difficult decisions on their own, they will think back upon what their dear mother chose, weather she is still alive or not.

lastly, i think it is important to never be afraid. weather it is telling your children you may not see them to college or going to every single chemo session, i think you need to be brave and strong and do the very best for everyone around you. i know she will feel rotten. her legs will be lead and her bones sensitive as liquid. she will not be able to walk, bend, or even stand up after a fall without consiterable pain. she will take naps frequently and never feel awake. her sences will be dulled and her brain a huge mushy mess. but shes got to keep up the chemo. its her only chance. if she loves her family, she should go if only for them.

please, please get her to tell them. stress the importance of chemo. make her face reality. she will and can die without the treatements! as i friend this is hard; maybe try explaining things to her husband? hes sure to be thinking along the same lines anyhow, and i'm sure hes scared crazy for her.

give them all my best and i'll be praying for her.




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06/12/2008 05:20
Arienne
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Thank you for posting. You offered some very wise advice. It bothers both my husband and I that she won't tell her kids, especially now. She is starting another round of chemo next week, and it does make her terribly sick. But I am afraid it will not help. The tests after the last round showed that she is down to only producing 25% of good cells and 75% bad. This is after 2-3 months of staying at 50/50.

Also, she does not have anyone but her kids. No husband to help her through this, nor any other family. That is why I think this (probably last) summer with her kids is important that they know to make it what they want it to be so they don't have regrets and guilt after she is gone.

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06/12/2008 06:05
lcoberley
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It must be really hard on her going through this alone. Maybe if she told her kids they would be able to give her strength.

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06/12/2008 06:28
Arienne
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Not only that, I know it would make losing her easier on the kids. She thinks she is sparing them misery by holding off as long as she can. But she has so many other health problems in side affects from treatments that I am afraid something will happen that she will simply suddenly die one day (she has been having several brain hemmorages lately), and it will be a complete shock to her kids.Then when they find out she had known she was dying for months and didn't tell them, I wouldn't be surprised if they end up very hurt and angry.

My Grandfather had a lengthy deterioration, and though it was difficult to know he was suffering and knew he was dying, it did give us all time to make sure we saw him more often and let him know how much we love him and whatever else we needed to say to him or do for him to make his parting easier on us, and time to get used to the idea that we would have to go on without him soon. As hard as it was to lose him anyway, I know it would have been so much worse if it was sudden and unexpected and we didnt have time to say goodbye and whatever else we needed. I know I would have been hurt and angry if he didn't tell us because he didn't want us worrying and give us the time for this.

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