Looking for feedback about yr leukemia

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Looking for feedback about yr leukemia

by Sayonarabeat on Sat Dec 09, 2006 12:00 AM

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Surviving and Living with Leukemia: Hello, I was diagnosed with leukemia on December 3, 2003, (AML M4eos), at the age of 24. I went into remission after my first round of chemo and had to continue with four more intensive rounds of chemotherapy until May 2004. September 2005, I was getting my monthly blood work check up and my White blood cells had dropped drastically to 1.4. I had to have an emergency bone marrow biopsy. First I was told I was clear, but then after the molecular test, FISH, came back, it showed there were 5% leukemic cells. My only option at that point was a bone marrow transplant. April 5, 2006 marked my new day 0. I now have male blood in me. The labs call to ask if I am a male. I am on month 7 post transplant. For years, I have been trying to graduate. And leukemia keeps putting it off, but I keep fighting it back. For my final project at my school, Eugene Lang College in New York city part of the New School. http://www.lang.edu, I am compiling information from people with leukemia who are surviving. You can be in the middle of treatment, post treatment or even pre-treatment. I would like to first put this on message boards and see the response I get. I have read a few books over the past few months on leukemia-patients, young patients, people who have watched their loved ones die from this disease, the 60 minutes News reporter who passed away recently, Ed Bradley. There is also Mary, from Peter, Paul and Mary who had a bone marrow transplant over a year ago. I have realized how little information is really out there for the patient and even for the world. I watched the 60 Minutes episode on Ed Bradley after he passed away and I was angry of the reporting. This is a journalistic video of someone’s life and there was not even five minutes to teach what leukemia was or how it affects someone. It usually is just said in passing, “an infection, the person could not fight.” But there is so much more than that. Some of my friends didn’t even know what a bone marrow was, didn’t even know they had this thing in their body called a bone marrow. It is important to teach and learn about leukemia but it is also really important to have more people’s voices heard who have had this disease. These personal stories are reassuring for the next person who is diagnosed in helping him or her get over their own fears or learn to control them. I see the research of finding cures for cancer important so people do not have to go through the things we’ve been through. But more than that, there are people going through this. We need to look inside ourselves to deal with the subjective feelings this disease gives and gave to us. That is exactly my focus. In ending, I want to use one of my favorite quotes from Carl Jung, “Who looks outside, dreams-Who looks inside, awakens” If you have the time, I would really appreciate these questions answered. You can answer on the message board or you can send them directly to me at: jfalkenstern@mac.com Also, if you are interested, I have a website: http://www.jfmedicalfund.org I thank you in advance. Questions: 1. When hearing your diagnosis, what was one of your biggest fears? 2. What did you do to deal with this fear? At this point, where is that fear in your life now?

RE: Looking for feedback about yr leukemia

by Tonyc on Wed Jan 03, 2007 12:00 AM

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On 12/9/2006 Sayonarabeat wrote:

Surviving and Living with Leukemia: Hello, I was diagnosed with leukemia on December 3, 2003, (AML M4eos), at the age of 24. I went into remission after my first round of chemo and had to continue with four more intensive rounds of chemotherapy until May 2004. September 2005, I was getting my monthly blood work check up and my White blood cells had dropped drastically to 1.4. I had to have an emergency bone marrow biopsy. First I was told I was clear, but then after the molecular test, FISH, came back, it showed there were 5% leukemic cells. My only option at that point was a bone marrow transplant. April 5, 2006 marked my new day 0. I now have male blood in me. The labs call to ask if I am a male. I am on month 7 post transplant. For years, I have been trying to graduate. And leukemia keeps putting it off, but I keep fighting it back. For my final project at my school, Eugene Lang College in New York city part of the New School. http://www.lang.edu, I am compiling information from people with leukemia who are surviving. You can be in the middle of treatment, post treatment or even pre-treatment. I would like to first put this on message boards and see the response I get. I have read a few books over the past few months on leukemia-patients, young patients, people who have watched their loved ones die from this disease, the 60 minutes News reporter who passed away recently, Ed Bradley. There is also Mary, from Peter, Paul and Mary who had a bone marrow transplant over a year ago. I have realized how little information is really out there for the patient and even for the world. I watched the 60 Minutes episode on Ed Bradley after he passed away and I was angry of the reporting. This is a journalistic video of someone’s life and there was not even five minutes to teach what leukemia was or how it affects someone. It usually is just said in passing, “an infection, the person could not fight.” But there is so much more than that. Some of my friends didn’t even know what a bone marrow was, didn’t even know they had this thing in their body called a bone marrow. It is important to teach and learn about leukemia but it is also really important to have more people’s voices heard who have had this disease. These personal stories are reassuring for the next person who is diagnosed in helping him or her get over their own fears or learn to control them. I see the research of finding cures for cancer important so people do not have to go through the things we’ve been through. But more than that, there are people going through this. We need to look inside ourselves to deal with the subjective feelings this disease gives and gave to us. That is exactly my focus. In ending, I want to use one of my favorite quotes from Carl Jung, “Who looks outside, dreams-Who looks inside, awakens” If you have the time, I would really appreciate these questions answered. You can answer on the message board or you can send them directly to me at: jfalkenstern@mac.com Also, if you are interested, I have a website: http://www.jfmedicalfund.org I thank you in advance. Questions: 1. When hearing your diagnosis, what was one of your biggest fears? 2. What did you do to deal with this fear? At this point, where is that fear in your life now?

Hello,

My name is Tony, and my wife passed away from AML Leukemia this past June. She had 2 bone marrow transplants and was hit with a lot

of chemo, but unfortunately she couldn't fight off infections. PLEASE
DO NOT GIVE UP, YOU ARE DOING GREAT, AND MUST KEEP THE HOPE ALIVE. YOU CAN BEAT THIS. rEGARDING YOUR QUESTIONS;

WHEN DIAGNOSED IT WAS WITHOUT A DOUBT HER BIGGEST FEAR,

2. SHE VOWED TO FIGHT A HARD AS SHE COULD AND NEVER GIVE UP,

RE: Looking for feedback about yr leukemia

by Tonyc on Wed Jan 03, 2007 12:00 AM

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Sorry about that,

PLEASE DON'T GIVE UP. IF YOU EVER NEED SOME ONE TO TALK TO, MY EMAIL IS --- Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----

My wife was 47 and our 28th Anniversay was 3 weeks after she passsed

I work with the Leukemia & Lymphoma Society ( and have for the past 4 years) to raise not only funds, but awareness to Leukemia.

Again.

PLEASE KEEP HOPE ALIVE AND YOU WILL BE FINE.

Tony

RE: Looking for feedback about yr leukemia

by Marjj4 on Sun Feb 25, 2007 12:00 AM

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Hi my 15 yr old son was diagnosed in june of 06 will AML. He had no symptoms.I just took all three of my children for routine blood work and it showed up. We where all very shocked and words can not discribe what my sons been through. We just finished his last chemo treatment and he is still 2 1/2 months later in the hospital fighting off typhlitis infection. He has not had chemo in two months and pray every day that we never see blast cells ever again in his blood work. We are in Robert wood Johnson hospital in new brunsick n.j. Very good hospital. i WOULD HIGHLY RECOMMEND IT TO every family out there. Thank you for listening to my story. any questions please email me. --Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --  . I know aml if it comes back, it comes back fast. But we pray and hope for the best.
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