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Newbie Dx both CLL and CML....?


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#1 stevenknox

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Posted 23 April 2011 - 10:17 PM

Hello All,

New to the  site.  Been living with CLL since dx in 2004, still in W&W, with the WBC now up around 180k.  Until recently, counts had only slowly crept up, then suddenly more than doubled in about 6 months.  However, they was no increase in nodes, and  the platelettes had increased, along with some spleen swelling.  Oncologists ran another set of FISH and Flow tests to figure out what was going one, and perhaps get the baseline for the CLL treatment regimen.  Found some of the original CLL bad prognostic markers had disappeared, but the CLL was still there.  However, CML had made and appearance also??  Oncologist  and I, plus the oncology staff at my medical center were quite surprised.  Anyway, seems I am somewhat of a medical oddity now.  After much head scratching, it was decided to try and treat the CML first, and perhaps  see if the CLL wasn't as advanced as thought.  Have just started the imatinib (Gleeve) for the CML, but still doing nothing for the CLL.  Have had no noticeable reaction to the imatinib.  Going in for a recheck in about two more weeks.  Still feel well, and remain active, even flying my glider and riding bikes.  Question is, has anyone else had the particular combination of two leukemias, and what were the treatments offered?

Steve

age 64

CLL dx 2004

CML dx 2011



#2 CallMeLucky

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Posted 25 April 2011 - 12:37 PM

Hi Steve,

I have nothing to offer other than to say I am sorry you got a double dose of this crap and wish you well in your treatment.

All the best...


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#3 tia

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Posted 25 April 2011 - 03:37 PM

Hi Steve,

I am sorry you are dealing with these...while I dont have much information I just wanted to say my Dad lived with CLL for 20 years with no treatment later on he developed MDS that progressed to AML.  We were told they are two separate issues.  I still feel like there was more to it.



#4 Trey

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Posted 25 April 2011 - 08:13 PM

Rare, but it does happen.  What sub-type of CLL do you have (including translocations)?

http://www.ncbi.nlm....pubmed/21368508

http://www.annclinla...t/full/38/4/405






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