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Just diagnosed with CML

Tracie_M
Posts: 1
Joined: Sep 2008

I think I'm still in shock. I was diagnosed with CML two weeks ago & couldn't believe it, so I went to two more doctors for a 2nd and 3rd opinion. Unfortunately, the diagnosis remained the same.

I am only 25 years old! I know that people much younger get this disease, but I'm just shocked, I can't believe it's true.

One of the biggest problems I'm having right now is telling friends & family. I haven't even told anyone at all. Not one person. I don't know how to tell people. I don't know what to say. Can someone please help me here? How did you share the news with your friends? I don't really have any close family, so that doesn't apply.

Thank you all in advance,
Tracie

proudmommy
Posts: 7
Joined: Jun 2008

HI TRACIE I TOO WAS RECENTLY DIAGNOSED WITH CML. I AM 27 YEARS OLD AND JUST DIAGNOSED IN FEBURARY 14, 2008 OF MY BIRTHDAY. BOY WHAT A B-DAY COULD YOU IMAGINE? THE BEST THING IS TO TELL FAMILY MEMBERS AND PEOPLE THAT ARE VERY CLOSE TO YOU CAUSE THEY WILL DEFINITELY BE A GOOD SUPPORT SYSTEM FOR YOU. WHEN I WAS FIRST DX I WAS REALLY SCARED. I DIDNT KNOW WHAT TO EXPECT. I EVENTUALLY CAME TO TERMS WITH IT AND I AM DOING REALLY WELL. I AM TAKING A FAIRLY NEW MEDICINE IT IS CALLED GLEEVEC AND RESPONDING REALLY WELL TO IT. IT IS A VERY GOOD DRUG FOR PEOPLE WITH CML. WHEN FIRST DX I TOOK AN ORAL CHEMO CALLED HYDREA. I HAD TO BE ON BLOOD THINNERS FOR A LITTLE WHILE BECAUSE OF THE HIGH PLATELET COUNTS. AS OF NOW I HAVE HAD 2 BONE MARROW BIOPSIES AND NEITHER ONE HAS SHOWED EVIDENCE OF LEUKEMIC CELLS. I WILL BE TAKING ANOTHER ONE NEXT MONTH CAUSE MY ONCOLOGIST IS REFERRING ME TO MD. ANDERSON JUST FOR FUTURE PURPOSES IN CASE I WOULD NEED A BONE MARROW TRANSPLANT I WOULD ALREADY BE IN THERE SYSTEM TO HAVE ONE. I AM A MOTHER OF TWO BOY AND GIRL SO YOU CAN JUST IMAGINE WHEN I WAS FIRST DX WHAT I WENT THROUGH IT WAS VERY HARD BUT I HAVE A VERY SUPPORTIVE FAMILY. TRACIE HANG IN THERE AND JUST REMEMBER NEVER GIVE UP GOD WILL NOT GIVE YOU NOTHING YOU CANT HANDLE. TAKE CARE AND GOD BLESS AND OH YOU CAN ALSO BECOME A MEMBER OF THE CHATROOM CSN SURVIVORS NETWORK AND BECOME A MEMBER AND CAHT WITH CAREGIVERS PEPOPLE THAT ARE IN TREATMENT AND ALSO PEOPLE THAT R IN REMISSION. IF U WANT TO I AM ALWAYS ON THERE IF I AM NOT WORKING. MY SCREEN NAME IS PROUDMOMMY. YOU ALSO CAN READ MY LITTLE BIOGRAPGY ABOUT ME AND MY DX. I HOPE I HAVE ANSWERED SOME QUESTIONS IF I HAVENT PLEASE FEEL FREE TO ASK ME MORE.

ryannikole
Posts: 3
Joined: Oct 2008

Hi Tracie, I'm Ryan. I am 24 years old and I was just officially diagnosed yesterday. I am completely terrified. I have told my mother and my boyfriend who are both as scared as I am but are trying to hold me together. If you would like to e-mail me, maybe we could share our upcoming experiences together.... it will probably be helpful to have a friend going through the same...

Ryan.parker27@gmail.com

cpasko45's picture
cpasko45
Posts: 2
Joined: Jan 2009

I was diagnosed just about 2 years ago. I am doing good. It is scarey and I still have anxiety about it but it has gotten better. I too couldnt believe it. I am 51 years old and was in the best shape of my life when I was diagnosed so I dont know why it happened. But I have learned to deal with it and think positive. If you want to talk feel free to email me. Cpasko45@aol.com

dfernand
Posts: 7
Joined: Aug 2009

Hi, I am 35 years old, mom of 4 kids and I was diagnosed with CML 10 months ago. I think I have taken it pretty well but my husband seems terrified but frustrated. Since I look fine when I am having night sweats or small amounts of joint pain, or even fatigue, my husband looks upset because I am not doing things around the house. Do I need to look sick in order to get some help from him and the kids? He keeps saying I need to join a support group to deal with this. I have accepted my fate and I think I have this cuz God was sparing someone ele who could not handle it, so he is allowing me to carry it for that person. I believe I will be okay. I will have my 12 month biopsy in October 2009 to see if I am in remission. I take Gleevec. For now the signals are mixed (some good news and some bad). How do we deal mith mixed test results? Will we die from this?

mcmarth123
Posts: 1
Joined: Aug 2010

Tracie -
Sorry to hear about your diagnosis. This happened to my daughter 5 yrs ago, when she was 23. She found out when she lost a baby. She too obtained many opinions it was so unbelievable. I want to address two things. How to tell people and what has happened with my daughter.
1) By all means, tell your closest 1 or 2 friends that you have been diagnosed by "x" doctors with a chronic blood cancer called CML. That you will probably live a long time. And that you know it is shocking and you are still in shock. If you have anything you can show them from any of the doctors, I would end all speculation by showing it. You don't have to tell anybody anything, but it is hard to handle the road you are on alone.
2) My daughter was told she had 1 yr to live and that there was no treatment. Obviously, that was years ago. She figured out the things that make her condition worse (exposure to germy things, like kids, not drinking water, excessive stress) and gets a blood transfusion when the funky red blood cell types get out of whack. And has a better life than most people.
Best of luck to you and please find somebody you can lean on.

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