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Q: Any Leukemia Information Please!!
asked by: scatterbrain on October 31st, 2004
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My brother is 23 yrs old and we just found out tonight that he has leukemia. He's been pretty sick for the last month or so, never ending nose bleeds, back pain, pale and thin...I'm really scared, and I don't know anything about this? There's so much medical jargon when I try to look it up on the net, it makes things harder to understand. I guess they don't really know what "kind " it is yet, but they're giving him bone marrow tests tomorrow and starting kemo right away. Is this any indication that it's worse than they let on, or is this routine? Besides all that, what can I do to help? Is there a really good web site for clear information and support? Please help me learn about this!
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Stasios
replied on November 1st, 2004
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Responding With Leukemia Infomration
Hi, I totally know what you and your family are going through. The day I found out my father had leukemia, I posted a similar message. It is such a shock to the entire family to hear that an adult member of the family has leukemia! Where the hell did this come from and why our family. I want to help answer some of your questions. Like you, I posted a message on-line myself and found an internet support buddy whose father was also diagnosed with adult leukemia three years ago. She was a blessing, finally a person who could answer some of my questions. Please do not hesitate to e-mail me. And for anyone else out there who wants to talk, offer support, and/or share info about leukemia.
god bless, stacy
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scatterbrain
replied on November 3rd, 2004
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Thank you so much for responding. I've been crying for a couple days now and feel like some education on this will make me feel a little better. It seems like i'm dreaming all this, and i'm waiting to wake up and have it hit me really hard! Thanks for the support!

After some tests, they are pretty sure it's the childhood kind of leukemia. We're just waiting for confirmation on that. They have started kemo though. What side effects can we expect? I already know he will loose his hair and be weak, what else? Also, is it normal that he seems a little "disconnected"? He acts like it's not a big deal. Is this denial?
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Stasios
replied on November 4th, 2004
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All
My father was dignosed with all. It is more common in children as well. He was released from the hospital, after 5 weeks of chemo, only to stay home for a week and half and be admitted bac into the hospital. The doctors think he may have an infection. The good news is that they did another bone marrow biopsy and found he is almost in remisssion. The chemo is working!!! Yeah! But, if we could only figure out why he is so sick, short of breath, and has abdominal pain, things would be better.

Listen, your brother is 23 years old. He will be okay! Make sure your hospital is fimilar in treating leukemia. He will be in the hospital for 4-6 weeks getting chemo and then he will get out patient chemo form a few months. He most likeley will go into remission where they won't find any cancer cells in his blood or bone marrow. When this happens, your brother can lead a full life (with some precautions) again. Your brother is young, with young organs. He will be able to withstand the chemo. Hell, look at my dad, a 60 year old man! I'll pray for you and your family.
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scatterbrain
replied on November 4th, 2004
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Well that sure is encouraging. It's only been a week, and he's at a good hospital out of town so I haven't had the chance to talk to him until last night. He told me how they spoil him rotten and that everyones been super helpful. That made me feel better because he sounds like himself, spoiled little brat! Thanks again. Good luck to your dad as well!
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tweetej
replied on November 24th, 2004
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How Is Your Brother?
Was reading this post and wondering how your brother is doing? Better I hope.
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mark_marietta
replied on December 31st, 2004
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Going Through the Same Thing Now
I just found out yesterday that my neice, age 27, was diagnosed with leukemia. She was feeling fine until monday after christmas when she became short of breath and was experiencing chest pain. Her mother took her to the hospital where she was diagnosed in leukemia crisis. She was immediately sent to another hospital for treatment. Since then, her wbc has dropped to 17,000 (i am not sure what normal is). A bone marrow test was also done to determine what type of leukemia it is, although that has not come back yet. Try as I may, I still cannot make sense as to why this would happen to a young person. I know all the medical reasoning (i used to be in the medical field for 15 years before changing career paths), but still have many, many questions that I am seeking answers too. Of all the reading I have done on the internet, I cannot find any site that gives usual prognosis of those diagnosed. I realize this is a case by case basis, however, are there any sites out there that can provide good solid information to this disease? I understand what you are going through with your brother and will keep you and he in our prayers.
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mnixon
replied on January 12th, 2005
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Re: Going Through the Same Thing Now
mark_marietta wrote:
i just found out yesterday that my neice, age 27, was diagnosed with leukemia. She was feeling fine until monday after christmas when she became short of breath and was experiencing chest pain. Her mother took her to the hospital where she was diagnosed in leukemia crisis. She was immediately sent to another hospital for treatment. Since then, her wbc has dropped to 17,000 (i am not sure what normal is). A bone marrow test was also done to determine what type of leukemia it is, although that has not come back yet. Try as I may, I still cannot make sense as to why this would happen to a young person. I know all the medical reasoning (i used to be in the medical field for 15 years before changing career paths), but still have many, many questions that I am seeking answers too. Of all the reading I have done on the internet, I cannot find any site that gives usual prognosis of those diagnosed. I realize this is a case by case basis, however, are there any sites out there that can provide good solid information to this disease? I understand what you are going through with your brother and will keep you and he in our prayers.


over the next few weeks and months your brain will be in overload and no information that you can get from any web site will prepare you appropriatly for what you are about to experience as each patient reacts differently to the chemo therapy however it will help and just a generalized web search on the paticular leukemia if it be all,aml,cll, or cml my four year old daughter is in her second year of chemo therapy and responding well chemotherapy treatment today again goes well. The normal range for wcc (white cell count) which you probably know by now is 6.0 - 16.0 I hope now that you should have the bone marrow and lumbar puncture results back that you may have been given some more information however I am quite happy to reply to any questions you may have if I may be able to help someone with the knowledge I now have I would be so happy all the best and the best advise I can give you is no matter what always stay positive in the end having still no real answers as to why our little beauty had to suffer this horrible disease staying positive throughout has been the only thing to get us through all the best chin up if I can be of any help write me all the very best for the treatment
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leu wife
replied on February 9th, 2005
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Understanding Your Pain
My husband was diagnosed with cml in 1998. For about a month we just cried and clung together as a family. We have 3 children. Every time we would start to fall asleep we got scared that it would be the last time we saw each other. Education is a key in getting a handle on your life. Looking back on it now it seemed silly to think that he would die that quickly but it a real fear. Count each day as a blessing and a gift and it will help you get through. The family has the disease almost as much as the one sick. Don't forget to take care of yourself too! You will be in our prayers and thoughts as you go through each day. I'm not saying the battle will be easy because you are in a battle. Just don't give up hope and keep a smile on your face and in your heart. Leu wife
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janet409
replied on March 21st, 2005
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Lots of Questions
My sister was diagnosed on aug. 2 and passed away on sept.20 from aml. I have lot's of question's and cant seem to find answers maybe someone can help. I was wondering if they check your liver, lung's, gallbladder and kidney's before starting you on chemo. My dad also died from this same awful thing 7 years ago we were told his liver couldn't handle chemo so he got blood tranfuse's for month's which kept him alive and doing fairly well. As far as I know no test where done on my sister what is normal here and does anyone know the answer. I have ton's of question's now but didn't think of any 6 month's ago when we should of I think we just wanted her well and we put alot of trust in her doctor which now we feel was a very big mistake. Some one please answer back.
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castleinfo
replied on July 7th, 2005
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Re: Lots of Questions
janet409 wrote:
my sister was diagnosed on aug. 2 and passed away on sept.20 from aml. I have lot's of question's and cant seem to find answers maybe someone can help. I was wondering if they check your liver, lung's, gallbladder and kidney's before starting you on chemo. My dad also died from this same awful thing 7 years ago we were told his liver couldn't handle chemo so he got blood tranfuse's for month's which kept him alive and doing fairly well. As far as I know no test where done on my sister what is normal here and does anyone know the answer. I have ton's of question's now but didn't think of any 6 month's ago when we should of I think we just wanted her well and we put alot of trust in her doctor which now we feel was a very big mistake. Some one please answer back.


a lot of people die from the treatment (far to many especially those older than 35... Treatment is usually worth it because you can be cured, unfortunatley if it doesn't go we'll treatment is possibly worse than just passing away... But its never pleasant even when you survive because then you think how long for ?
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tiredone
replied on July 9th, 2005
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Hi mnixon you said a normal wcc is 6.0-16.0.My dr said it should be 4.0-11.0 my 3 test have shown readings of 18.6,13.2 and the last one was 16.8,i think id rather go by you coz then im not to bad lol.Im in australia I wonder why the difference in whats a normal count,oh well.I hope your daughter is going good.Im about to go for a 2nd opionion coz my dr has admitted she doesnt know whats going on.Take care.
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Jasmin
replied on July 12th, 2005
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Have You Considered Complimentary Treatment?
My daughter (11) has received chemotherapy for aml last year, however, it relapsed now.

If I was clever then I truly believe it would not have relapsed. I have read a lot about cancer and leukemia and found lots of good information. Now, I am supporting my daughter with various herbal remedies and oxygen products. I can already see some positive effects already. I am hoping to actually cure her without bone marrow transplant which is said it is the only way to go now for her with no guarantee.

I would like to know if anybody else is using some supplements during treatment. Or, I do not mind sharing my own findings and fighting strategies.
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castleinfo
replied on July 13th, 2005
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Herbal Remedies For Aml
First let me say I am very sorry about your daughter.
But aml is a fast acting cancer that kills everyone who is not treated, people don't just suddenly recover from it.
It is very common to fail remission for aml after just chemo their are two reasons they don't do a transplant in the first place :
1) their aren't that many donars
2) it's a bloody awful thing to go through.
I had my transplant november 2003, i'm just getting over it, at many points I did not think it was worth it... But I was 29.. Now i'm better i'm very glad I did it.
One day they'll find a cure unfortunately for now we only have the transplant option.
Oh and the other option is to try and be happy and painless until the end.
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sarahl800
replied on April 5th, 2006
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Aml Leukemia
My son was diagnosed in feb 2005 and had 4 bouts of chemotherapy ending in june 2005 and is in remission now. He is doing very well so far but now having to go for various tests and having to cope with life after chemotherapy. This can be very difficult at times. This is the first time I have ever joined a forum before. Reading some of the messages from other people brings everything back to me. My son was 17 years old when he was diagnosed and is still hard to take in even too this day.
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