93 replies to this topic

[CML2012]

I would like to thank everyone that has replied to this post!!!  I am new to the board and I was just curious who was had CML and where you were.  We are really spread out.  I hope as people join the board they will continue to respond.  At the oncologist they tell me I am the youngest patient, but I am definitely not the youngest in this group.  It has been interesting to read each response.

[woodworker]

Hi Everyone,

I was DX August of 2009 at the age of 31. Started on Gleevec, switched to Sprycel, then to Ponatinib and now after the new FDA study release I am moving on to Bosutinib.

I live in SE Michigan.

Not sure what took so long for me to find this board but, I am so glad I did!

[0vercast]

Age 31

Diagnosed at age 30 after experiencing severe bruising that resulted from leg cramps.

St. Cloud, Minnesota

Tried Gleevec for 19 months, and now I've been on Sprycel for two weeks.

Joe

[AliceP]

Just diagnosed in November 2013 at the age of 65.  Started Sprycel on Nov. 27.  I'm female in Westchester County, NY.

So far I'm feeling ok except for diarrhea.  Hope that that will pass!  It's encouraging to hear from so many with CML and to hear your stories.

[p.a.m.]

Pat in SE Michigan also, Dx'd in Apr '07, 400 mg Gleevec until just recently when gleevec stopped working.  Plans are to move to Sprycel 100 mg to see if I can get remissions back.

[Floa7]

My son was diagnosed in Nov 2011, So I had some info on CML before I got diagnosed three months later, in Jan 2012. The oncologist said this was a rare disease. Not to rare to me, Within 6 months the 16 year old boy next door also got diagnosed. We are all in remission, now.

[CML2012]

Floa7 just wondering where you live?

[Floa7]

I live in Columbus, Indiana With a lot of Industrial plants in this town. We had a 100 year flood in 2008, millions of damage done, even flooded the hospital. I have always wondered if our well water got polluted with all the flood water receding and going down stream. The health department checked the water and found no bacteria, It was safe to drink. I called them again when we all got CML, The Health dept. said if they new what chemical to check for , they would. Also a 78 yr old guy died, in 2011, from CML a week after diagnoses, but he had other health problems and his age. He lived 5 houses from me.

I am also a 63 yr old Great Gramma this week.....

[pamsouth]

HI, FLOA7,

I live in Greenwood In about 30 miles north of you off of HWY 135.  I'M only about two miles from the county line into Indianapolis and about 2 miles west of HWY 37.

I was diagnosed in 2005 and I keeping thinking my CML came from two or three different things.  Before we moved here in the fall of 1999 All of us neighbors were spraying a lot of chemicals on our landscape and trees.  The lady across the street was diagnosed about the same time as me,.  I should have been diagnosed in 2002 but for some reason my primary doctor didn't follow up or tell my platelets were out range 100,000 high, something like that and my granulytes were off.  Instead she waited another 3 years until 2005 to run another CBC and my platelets were over a million and within 2 weeks were over two million, white cells were not terribly high.  I think white cells were around 15,000 at diagnoses and the highest they ever got was somewhere around 21,000.  Anyhow I flew to MDAnderson Tx, and he said I had this CML brewing for several years, so it makes it harder to pinpoint.  OH, and I have always seen my primary doc every years, so why did she wait three years to do another CBC when mulitple things were out of range, or at least should could of told me.  Since than I get a copy of my own labs from everyone.  I don't think some docs like that.  One nurse said it sounds like your looking for someone to sue.  I said mistakes are made and it is my life, and it seems most docs don't tell you a lot of things.  When i recently changed primary doc's I got a copy of all my medical history, there were a lot of things she didn't tell me.  Like in 2007 when I had my gall bladder out,  good good bladder just the bile duct tube quick working they say due to inflammation, seems my  kidneys and all my problems are due to inflammation.  Kidney doctor said eat low sodium.  Funny thing, when I left I thought my soidum and potassium have been boarder line or low since I have been on Gleevec.  I took a 2 month gleevec break and inflammation went down.  Now I take supplement that help alot with keeping down the inflammation.  Nurse said I had good veins this time, good hydration.  Plus my hands do swell anymore or turn white.  There you go some of those supplement do work.  Primary doc didn't mention I had free standing fluid in my stomach cavity, and a cluster of tangle blood veins, pushing against my pancretis, I think that was it.  I was shocked at the things she never told me.  I had to find out for myself that my kidney GFR wast stage 3.  I guess some people don't want to  know or my previous doc and nurse said I didn't need to know, nothing I could do.  But that is my choice not theirs.  

In 2000 when we had moved to our new place we had a lot of poinson ivy and I took high doses for a long time of steroids.  REcently I went to ortho doc for some spurrs on my thumb he said he could give me injections, but was afraid to because they affect your immune system.

So between spraying a lot of chemicals and the heavy doses of steroids, well I think it had to be one of those.  I'm still narrowing it down to the heave spray of lawn chemicals because my neighbor across the street was also diagnosed with leukemia.  I not sure which kind she had though.  Because we had moved when I heard about her diangoses and she had also moved and I wasn't able to locate her.

PamSouth, Greenwood IN

[lernerv]

I am female, was diagnosed in 2005 at the age of 52. Started on 400 Gleevec, then 600 Gleevec, could not handle side effects, switched to Sprycel but after 15 months had heart issues so changed to Bosutinib in April of this year, 300 mg and so far so good. Happily celebrated my 60th this year and feeling good. Val from San Diego

[pamsouth]

I was just a reading an article from National Cancer Institute on Bosutinib, aproved by FDA Set 4, 2012 and 500mg being the standard dose.  Just wondering why you are on 300mg instead of standard dose and what your FISH/PCR status is. 

http://www.cancer.go...o/fda-bosutinib

PamSouth

[lernerv]

Hi Pam, I seem to have always had strong reaction to side effects of all TKI so my Doc agreed to start me on 300 Bosutinib. My PCR is at .0032 and I have reached compete molecular remission after 6 months on drug. I can handle side effects so we will stay with this dose for now. I work 60 hour weeks and travel for a living so quality of life always an issue...as is for us all. Valerie

[Frogiegirl]

Diagnosed 6 weeks ago. 31 female live in Utah:) Tasigna 150mg twice daily

[rchinavare]

November of 09 our son was 14 when he was dx. with CML. He started Gleevec shortly after and within that year he was in remission. We live in Michigan.