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Joined: Aug 2011

anyone out there have CML chronic myelogenic leukemia

MC04's picture
Posts: 39
Joined: Dec 2007

Hi jko, I am a survivor, dx'd 2004 and still around. What can I help you with?

Posts: 1
Joined: Mar 2012

Hi! I was diagnosed in 2005, and have been taking Gleevac 400 mg. 1 x da. since then. So far, so good. However, I am worried about some minor changes in my white count. My oncologist has assured me that I am within the normal range, but the truth is, I don't really know enough about CML to feel reassured. I trust my oncologist, but he is not very forthcoming with information, even when I ask questions.

My oncologist has saved my life three times since I turned 42. Back then, I had medulary (sp.) type breast cancer on one side. Twelve years later, I was diagnosed with CML, then 5 years ago, breast cancer in the other side, different type. He called it a "garden variety". Instead of suffering through radiation again, I opted for a bilateral mastectomy.

I think my concerns are normal for me, after all of the above. I guess I just want to talk to those who have been through the wringer, like me. It helps me feel like I am ok.

Hope you are well, and stay that way! Ty.

beverly1957's picture
Posts: 5
Joined: Jun 2012

Hi, I was diagnosed in 1996 at the age of 39. In October of 2012 it will be 16 years. God has really been with me through the ups and downs, mostly downs. It's alright because things could have been different. There is always someone worst off than you.

I agree that most oncologist don't give information freely. My first medication was Interferon and Hydrea. After years of the previous medication. I told my first oncologist about a clinical trial for Gleevec,it was called STI571. He was able to get me in the clinical trial that he had no information on. I found the information on-line. I started taking 400mg and it was then increased to 800mg. It was no longer working because I had been on it for 10 years. I just recently began taking Sprycel.

Over the years I have gone through a lot. My faith has gotten stronger over the years. I still struggle. I'm thankful to be alive.

Oscar0914's picture
Posts: 32
Joined: Nov 2005

Me since Nov 2005.

Posts: 2
Joined: Oct 2011

I was diagnosed in December 2010. I am currently in hematologic remission, and on my way, hopefully to complete molecular remission, thanks to early diagnosis and Gleevec. Blessings to you in your own struggle with this disease.

Posts: 1
Joined: Dec 2011

I was diagnosed in December of 2005 with CML and I am currently in remission.

Posts: 2
Joined: Jan 2012

i have had cml

Posts: 2
Joined: Mar 2012

I'm an ex CML patient.
Diagnosed in 1987 . Age : 12 years
Stayed under control for 3 years , than decided to take the chance of a Bone-marrow-transplant. ( 1990 )
Had Chemo , Total Body Irradiation , Irradiation of the spleen.
Although i'm a Belgian, had my transplant in London , UK.
At that time only one ( 1) non-related-transplant had been done in Belgium.

Since then I have been quite well.
More easily than an non-survivor i'm having problems with normal colds, flu etc.
Last year double pneumonia , H1N1-virus , but came through quite quickly.

Otherwise no problems untill now.

Having a good contact with my English Bone-marrow-Donor

All the best to you all

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