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sister diagnosed with AML today-need success stories or stories from parents/relatives

bigsister
Posts: 5
Joined: Sep 2008

My sister was diagnosed with AML today, and I'm being tested to check if I'm a suitable donor early tomorrow morning. She's only 20,and my family, including my sister, lives across the world, so I feel completely helpless. We're all extremely scared, and it would help us immensely to hear some success stories.

Thank you

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Your CSN Staff
Posts: 200
Joined: May 2008

Dear bigsister,

The easiest way to locate other CSN members with similar experiences is to type keywords (such as "AML," "AML success stories," "AML emotional support," etc.) on the search bar at the top of the home page. You can refine your search by clicking on the “Advance search” link listed underneath the search field. The major categories of content on CSN are blogs, discussion boards, “About Me” pages, etc. For example, if you are looking for a specific resource on the Resource Library, you can limit your search to resources only by clicking on the "resource" and "advanced search" button at the bottom of the "advanced search" box. Remember that you must be logged on if you want to post anything on a discussion boards, view personal pages, use the chat room, etc.

Cordially,
Your CSN Staff

tea and oranges
Posts: 1
Joined: Oct 2008

Hi, I just joined the survivors sight today. I am hoping I am doing this correctly. I am a 56 (old I know!) year old survivor of what used to be called Acute Childhood Leukemia. I had it in 1955-56 and don't remember too much of my treatments. I do know that Dr. Sidney Farber was my doctor (of the famed Dana-Farber) and my parents took me to Boston from our home in Chicago for treatment. I hope I have helped.

srisko's picture
srisko
Posts: 34
Joined: Apr 2008

Hi Bigsister,
I was diagnosed with ALL in 1990 when I was five and I'm 24 now. I was at Floating Hospital for Children in Boston for five weeks reciving chemo, Prednisone, and other meds. I went into remission after those five weeks but I still needed three more years of chemo, bone marrow tests, blood tests, and spinal taps. I've been in remission for 18 years and been off-treatment for 14 years and I'm graduating from college next year. The best thing you can do for your sister is be there for her. Maybe you can both try and find a coping mechanism together. Humor and art are my coping mechanisms. I made it through and I'm sure your sister will too. Sending thoughts and prayers to you and family,
Sarah

joannl
Posts: 1
Joined: Oct 2008

I was diagnosed with AML in 6/08, I went through 3 rounds of chemo and had a autologous stem cell transplant in Aug. 08. I had a bone marrow biopsy done a few days ago and have a "clean" finding with the suggestion to go enjoy my life. It is possible to get through the treatment, it is hard but I am so grateful that I again have a second chance. I am 51.
joannl

patbriones
Posts: 1
Joined: Mar 2009

She was diagnosed Oct 08, MD Anderson in Houston, went thru 2 rounds of chemo and transplant in Jan 09, spent another month in hospital and was released 2 wks ago in remission and clean bone marrow. She is on anti rejection and numerous other drugs. She has lost 60lbs and has not been able to keep any food down..they put her back in the hospital 2 days ago and she is refusing all visitors. She is 55 and has 3 children and 2 grandchildren. Her husband has been with her 24/7, but got sick and is at home. She refused to see her daughter today and my other sister actually just went in her room and says she is just laying there with her eyes closed, refusing to respond. We are terrified and do not know how to reach her. Please help if you went thru this phase of not eating. Thank you.

Chelsea6
Posts: 1
Joined: Feb 2009

Bigsister,
I just want you to know that it's ok to be scared. I was three years old when I was diagnosed with AML (which is not common). That was in 1991. I am now 20 years old and have had a clean bill of health for almost 17 years now. My little sister, who was 2 at the time of my diagnosis, was my bone marrow donor. She means that absolute world to me, not only because she was a match to me, but because she is the reason for who I am today. I initially was at Bronson Methodist Hospital in Kalamazoo, Michigan where I was diagnosed, but was transported to U of M where my parents decided to have me transported to the University of Minnesota at the Mayo Clinic. I received chemo for about 5 months or so on and off, and had a bone marrow transplant in december of 1991.
I want you to know that even though it's scary and you sometimes feel like you just don't know what to do, your family can make it through! Your sister is strong, and she needs you and your family more than anything right now. I believe in her, even though I don't even know her.

Good luck, and I hope that I was of some help to you and your family.

Chelsea

buguhboo's picture
buguhboo
Posts: 6
Joined: Feb 2009

bigsister,

I was diagnosed with AML (type M0) Aug, 15th, 2008. I went through 5 rounds total of chemo, and just finished my last round in Jan. I feel great! I'm not on any medications at the moment, and everything seems to be fine. I spent 2 weeks in the ICU in Sept. 08, but dont remember much of it, due to getting an infection while I was neutropinic (no white blood cells). That was the worse part for me, besides finding out that I had leukemia in the first place. The emotional pain, for me anyway, seems to be the worse. It is a little harder now, cause I know that there is a 50/50 chance it will come back with in the next 2 years. And that means a bone marrow transplant... but that's a bridge I'll have to cross when I get there. How are things going as of now... We're pretty close to our diagnosis', and treatment.. Would love to hear how things are going. Keep your head up.. And just remember to have faith in God, cause he's the only one that can really help us. Doctor's can only heal the physical, but not the emotional.. remember that.. God bless!

SashatheSurvivor
Posts: 3
Joined: Jun 2009

Hey Buguhboo,

Our stories are scarily similar. I was diagnosed with AML on 6/08 and went through the 5 rounds of chemo. My infection was after the last round in November and I can't remember much about that week. I'm in remission for 7 months and have a 40% chance of relapsing within 2 years.

I have 4 kids, one of whom is 6.

Physically, I'm great but it's so hard to deal with the possibility of a relapse. But God is faithful.

doreenh1986
Posts: 6
Joined: Mar 2009

HELLO BIG SISTER,
I WAS DIAGNOSE IN APRIL 25,2008 WITH AML I WAS 22 YEARS OLD I WAS VERY AFRAID WHEN THEY GAVE ME MY DIAGNOSES. BUT THEN I THOUGHT TO MYSELF IF IM AFRAID IM ONLY GOING TO GET MY SELF SICK AND THATS NOT WHAT I WANTED TO DO.
WELL I STOOFD IN THE HOSPITAL OFF AND ON FOR ABOUT 8 MONTHS AND LET ME TELL YOU IT WAS THE HARDEST THING EVER BUT I GOT USE TO IT.
I UNDER WENT CHEMOTHERAPY TWO WEEKS AFTER MY DIAGNOSIS FOR 7 DAYS I WAS ON TWO DIFFERENT ONES. I REMEBER EVRYONE TELLING YOUR GOING TO BE SICK , WEAK AND LOSE ALOT OF WEIGHT BASICALLY THEY SAID I WOULDNT BE MY OLD SELF. DURING CHEMO I DID OK I WAS SICK ONLY THE LAST TO DAYS VOMITING AND FEVER AND SO ON. AFTER CHEMO WAS DONE I WOULD GET TRANSFUSIONS TO BRING UP MY BLOOD COUNTS AND I WOULD BE PERFECTLY FINE. I WENT THROUGH WITH CHEMO 1 WEEK EVERY MONTH FOR 8 MONTHS. I WAS IN AND OUT OF THE HOSPITAL BUT HAVING MY FAMILY THERE WITH ME ALL THE TIME JUST MADE THINGS ALOT EASIER FOR ME IT NEVER GAVE ME TIME TO BE BY MYSELF AND THINK OF ALL THE NEGATIVE THINGS OR WHAT COULD BE THE WORSE TO EVER HAPPEN TO ME.

NOW WE ARE IN MARCH AND I HAVE BEEN IN REMISSION FOR 9 MONTHS MEANING I AM CANCER FREE....
IF THERES ANYTHING THING ELSE YOU NEED HELP WITH OR WANT TO KNOW MORE I AM MORE THEN WILLING TO HELP YOU OUT... SEE GOD GAVE ME A SECOND CHANCE FOR A REASON :)

jayceeinbedford
Posts: 5
Joined: May 2009

I've just finished my second dose of chemo. I am at home, waiting for the my counts to go down and then get a shot of Neulasta to bring them up again.

I'm a 45 year old mother of three daughters that I hope never have to go through this. They are 25, 23 and 8. The 8 year old handles it pretty well. The others were scared.

Being able to talk to people that are positive and sending out prayers to me really helps.

The hospitals, insurance and this site have people you can talk to if you need professional help. I've asked for it from my insurance. I'm just waiting for them to call.

When I was diagnosed in March, all the doctors and nurses told me that there were three things that I HAD to do to get well:

Rest
Eat
Good Attitude.

Any time my brother thought I was going to start falling into a depression, he knocked me out of it.

I went to a cancer suvivor day celebration yesterday and the psychiatrist who gave the speech says that the good attitude has proven over and over to work.

I hope this helps you. Good luck to you both, my prayers are with you.

Janet
DFW, TX

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