93 replies to this topic

[Tom1278]

I'm 34, I was diagnosed at 33 and I'm on 400 mg Gleevec.  I'm in the DC Metro area.

[momruns]

Greetings,

Dx 2/2011 age 52.  Currently on 4th drug, have never acheived response.  Today I am on Icusig, will have main blood test end of Sept.  With this drug they are going to try to stop the med after 2 years of 0.00   so I have a mission.

Loreta

[hannibellemo]

CML 2012, the reason for the drop may have been cutting out the ibuprofen, but many of us take various anti-inflammatory meds for our aches and pains. More likely, the reason for the large drop is the additional length of time your TKI had to work on the disease process. Mine went from 98% to 71% to 4% in about the same time period on Gleevec. (I was taking prilosec all that time, too)  I bet many of us on here had the same response.

Don't be hard on yourself and think that taking something for pain was the cause for a slow initial response - that is pretty normal for many of us!

Congratulations though, on the international scale 1% is complete cytogenic response, you're almost there! Do you know if your lab uses the international scale?

Pat

[Jamar]

42 male, 38 at time of diagnosis. Living in AZ when diagnosed currently living in Chicago.

[bagdaddi]

44 year old male, 42 at time of diagnosis.  Memphis, TN.

[story]

Hi all, first post, have been a long time follower. I am a 54 year old guy from Story City, Iowa. Diagnosed 5/4/2011. Have been taking Tasigna from the beginning. I have the typical mild side effects, mostly skin and peripheral hair issues.  I have been PCRU since 11/2011. I am forever thankful for Dr. Druker and his work to bring us TKIs.

[Pin]

I'm a female, diagnosed at 29 years in June 2011 and I live in Australia.

[Joy_in_Phoenix]

38 female diagnosed 3 months ago, Phoenix Az Tasigna user

[janne]

Diagnosed at age 54 in 2008. Took Gleevec two years. Was diagnosed early in disease, but Gleevec was still difficult. I made adequate progress but had difficulty being compliant with drug and working full time. Switched to Tasigna. PCRU for one year. Tasigna much better. Live in Montana.

[pamsouth]

Diagnosed July 2005 at the age of 57 (female) with CML.  Have been on Gleevec the entire time.  Am staying at (FISH/PCR) CCyR level between 1 % to 13 %.  Currently on Gleevec 300 mg due to other chronic illnesses such as low GFR, Kidney filteration in Stage 3.   Live just south of Indianapolis Indiana.  Recently tried to switch to 50mg of Sprycel, for just a few days, but had horrific toxic side effects.  Just don't care at this age, 65 years, with other health issues, to be jumping around on TKI's.  Hopefully wills stay the duration on 300mg of Gleevec unitl there is a cure or God calls me home.

Pam

[djm]

I was diagnosed May 5, 2012. 42 years old and hail from Michigan, about 45 minutes north of Detroit. Currently on Tasigna 400mg twice a day. My PCR back in June was 0.121%. Hoping to be officially at MMR when I see the doc next week for my 3-month blood draw.

[JMGrad]

Was 2 weeks away from my 36th birthday when I was diagnosed in Jan 2012! Talk about a birthday present...  Started on Gleevec but had a BAD reaction and was switched to Sprycel. I live in San Antonio.

[FalseAlarm]

I'm 23 years old (male). I was diagnosed 6 months ago in AP, currently on Tasigna and I live in Malaysia.

[KerriD]

Hi there,  I am Kerri , I live in Kansas City with my 2 sons ages 14 and 11.  I was diagnosed in August 2011 at 47 and put on Tasigna.  I am turning 49 this weekend and I have been PCRU since  Dec 2011.     The hardest thing about this disease for me is the stress of dealing with it....waiting for results, staying employed to keep insurance etc....  I really struggle with admitting I might be limited in some capicity.  Alot of people in my life dont even know that I have CML.....I dont want to be treated differently because I have CML ... at the same time I struggle with being exhausted frequently and I have pretty serious memory issues...my onc thinks that is due to stress rather than Chemo Brain.  Who knows...

[Rissa]

My diagnosis was confirmed in May, 2011 at the age of 42.  I'm a female and I live in Maryland.

[CindyS]

I'm 56, female and was diagnosed August 5, 2011 at age 54.  I live in Prescott Valley, AZ.

[pamsouth]

@ KerriD,  You would really be hard pressed to find any; doc / oncologist/ hemotologist, health care, that would admit to any tocity or side effect coming from these drugs. 

Some because of the money others because they think you have no other choices, so they are being kind.  But I am finding perhaps I have more choices than I originally thought, just have to fight thru the medical community.

PamSouth

[sonia]

I am sorry for all you who are so young to have this disease.  My mom is 66 and was diagnosed with CMML in 2009.  She had her enlarged spleen removed years ago since she had very low platelets and has not taken any medication for the Leukemia so far.  She now has very enlarged lymph node in the neck area.Waiting to see what it is.  This year my sister has also been diagnosed with Chronic Lymphocytic Leukemia at age 40.  I thought it was bad enough to support my mother through CMML and now we are told that my younger 40 year old sister has it too.  I am now so worried that it is genetic.  My doctor will not send me for any other tests since my blood work is normal. I bruise easily and have a swollen neck. I want a test to see if my spleen is enlarged but my Doctor says I should stop surfing the internet.

[pamsouth]

Sonia,  do what your gut tell  you.  It's your body, your life!!  If you really want to get check out, you might have to go to a few doctors, until you get the right one.  Doctors are also regulated by insurance guidlines, so sometimes their hands are tied, and all they can do, is shurg it off,  hoping you don't worry yourself to death.  In any event get all your check ups and blood work done, to keep an eye on it.

Good luck, Pam

[tiouki]

Hi all,

23 year old male, was diagnosed 2 years ago, I live in France (Paris), and take 100mg sprycel

Pierre