93 replies to this topic

[CML2012]

I am 43 years old and female. I was 42 and 5 months when diagnosed with CML. I live in Charlotte NC. I am curious about the age, age of diagnoses, gender and general location of others with CML?

[Dana]

I am 45 years old and was diagnosed 10 years ago at 35 yrs old.  I live in Tulsa, Ok.  I just started my 3rd drug.

[deskybar]

Hello, this is my first post here. I am newly diagnosed as of Aug. 15 2013. I am a 28 year old male and live in Peoria Az. I have  been on Tasigna and allopurinol since.

[LivingWellWithCML]

I was also 42 years and 5 months old when I was diagnosed -- weird! (Atlanta)

[hannibellemo]

Welcome, CML2012 and deskybar, I think you will find good information and great support here! I was diagnosed in 2008 at 57, female, and I live in Iowa. I was on Gleevec for 9 months (liver toxicity) and have been on Sprycel 100 mg for 2.5 years and 50 mg. 1.5 years. I'm MMR.  I'm evidently a lawyer's worst nightmare because, as you can see, I tend to give more information than I am asked! 

Pat

[cleocans]

I am a 40 year old female.  I was diagnosed two years ago at 38.  I live in SW Oklahoma.

[LLawrence]

I was 42 at diagnosis 1 year ago. I am on Tasigna and live East of Raleigh, NC.

LL

[TeddyB]

37 when diagnosed, from Norway.

Teddy.

[Susan61]

HI:  I live in N.J., and was diagnosed 15 years ago this Dec. at the age of 50.  I am 65 years old.  Been on Gleevec since Oct. of 2000, and prior to that I did Interferon with Ara-C shots everyday before TKI drugs were available.

     I also would like to welcome you and Deskybar to our group.  We have some long time people here as well as other newbies like yourself.

    I like what Pat wrote, because it helps you to see how this disease is different for everyone, but yet so treatable.  You have more than one choice for a TKI drug, so if one is not right for you then you can go on another.  When I was diagnosed all we had was Gleevec.  I wish you both well, and we are all here to help anytime.

   By the way I am doing fine.

Susan

[Antilogical]

Female.

Pittsburgh, PA (USA).  GO STEELERS!  GO PENS!  GO PIRATES!

CML confirmed 02/2012.

Age 59 at diagnosis.

Treated with 400mg Gleevec.

PCR-U at 9 months.

[mariebow]

Hello, I was 58 when I was diagnosed Jan 2012, I am CCYR or undetected. I take 150mg of Tasigna twice a day.  I know I had it at least a year before, because I was hospitalized for food poisoning and severe dehydration and white blood count was 86 compared to the normal WBC range of 4 to 11 I believe.  I live in East Texas, close to Tyler TX.

[hannibellemo]

Congratulations, Marie! If you are undetected you are CMR or PCRU (most often used on this board). The hierarchy goes like this (for those new to this): CHR (complete hematologic response), CCyR (complete cytogenetic response), MMR (major molecular response), CMR (complete molecular response or PCRU, PCR undetectible).

Way to go!

Pat

[mariebow]

Yes, hannibello Thanks

[Mayra]

Welcome to the group!  I was diagnosed Dec. 2012 at the age of 35.  I'm 8 months in and am CCYR.  Less than 1/2 percentage for MMR.  This group has been fabulous.  They helped me so much when I was first diagnosed.  Best of luck!

[IGotCML]

44 year old male, diagnosed December, 2012.  D/FW, TX.  I am using Tasigna 150mg twice a day.

[Teresabourgeois]

Howdy and welcome!  I'm a female . DX at age 51, 2011.  From south Louisiana.  Started on 100 mg Sprycel, now on 40mg.  Geaux LSU!!

[CML2012]

Thanks hannibellemo for the definitions ..... I am still learning. Thanks to everyone for the feed back. I just feel like there is no one close by with CML.  However the doctors and nurses tell me there are others but that I am their youngest. I am just trying to better understand this disease. I was at 53% for the PCR for BCR/ABL when diagnosed. Two months later at 41% and five months after being diagnosed at 1.69%. The reason for the bigger drop during the later three months was no ibuprofen. I have another PCR test in September which will be the eight month mark. We are hoping for 0%. Not sure what that will mean or what is next. I take 400 mg Gleevec each day. Please continue with age of diagnosis, gender and location. I appreciate any and all feedback!

[Otigon]

29 years here, diagnosed in April 2013. I'm in Houston

[ChrisC]

Dx'd @ age 57, 459K WBC, in Oct. 2008. Was seven months on/off Gleevec, four months on Spycel then PCRU @ 11 mos. post-dx. Two years @ PCRU, now almost two years still-PCRU yet on no medication (with permission). Lived in Bay Area in California for 10 years prior to dx, but worldwide earlier in life; still live in the Bay Area

[chriskuo]

The median age at diagnosis is 64.  I was diagnosed at 63.  Our posters tend to be younger than median.