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Diagnosed today, starting Tisigna tomorrow


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#41 tiouki

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Posted 05 February 2012 - 05:11 AM

Hello SharaT, I also hope you don't have CML, but you can get CML even if you are young, I'm 22 for instance, and I know some people who got it at 16.

For diagnosis you need a bmb to see if you have the mutant "philadelphie" chromosome.

If it eventually turns out that you actually have CML try not to panic by now the treatments are very effective, some people like me even don't have any side effects and life expectancy should be normal 

good luck !

Pierre



#42 Trey

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Posted 05 February 2012 - 10:21 AM

Although a BMB is necessary for a proper and complete diagnosis and to identify any high risk factors, a 95% diagnosis can be made with either a FISH or PCR.  With a WBC over 25K, leukemia is a virtual certainty. 



#43 lrock

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Posted 08 February 2012 - 05:10 PM

so quick update, wbc has gone from 38 to 11 in a little under 2 weeks.  But, I broke out in a full body rash and got really dehyrated so I had to go to the onc today and have iv fluids (my other option was admission to the hospital, boo) and I've got to go back tomorrow for round 2.  they are checking blood and urine for staph infection or rocky mountain spotted fever or any other weird stuff it could be.  Also took me off my Tasigna for a couple of days to see if the rash is a side effect or allergic reaction.  anyway, that's where we are right now. 



#44 Judy2

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Posted 08 February 2012 - 05:50 PM

Hi Leigh,

I hope you get your rash straightened out. I got a terrible rash from Tasigna, my chin and the area between ny eyebrows was swollen so now I'm on to Sprycel and dealing with blister like bumps. It's a  long road but hang in there, everyone says it does get better.

Judy



#45 eshimpa

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Posted 08 February 2012 - 07:02 PM

If you have more questions, please ask. I was diagnosed about 4 years ago when pregnant with my second child. I have been on Gleevec and currently on Tasigna. I am doing well, in MMR but not at CMR (Complete Cytogenic Response) so medically I am at a "sub-optimal" response. I have seen Dr. Cortes at MD Anderson.

Emily






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