Member
Posted 23 April 2012 - 04:14 PM
Hi Everyone,
Just got the word back and my mutational analysis done at Mayo was negative for mutations. Hoping I can get off this PCR plateau and hoping the negative analysis means my genome is stable.....! I started the increased dosage of Tasigna a week ago. I wonder if it will do anything? Who knows...
New Member
Posted 23 April 2012 - 07:58 PM
That's good news Josh! I hope it gives you some peace of mind.
Traci
Advanced Member
Posted 23 April 2012 - 09:06 PM
Great news! Good luck with your numbers. I hope they start heading downward again.
Marnie
Advanced Member
Posted 23 April 2012 - 09:33 PM
Hijacking a bit, hey Marnie, how the heck are ya?
Advanced Member
Posted 23 April 2012 - 09:42 PM
Awesome news Josh - That is great to hear! 
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
Guest_billronm_*
Posted 23 April 2012 - 10:13 PM
Hi Josh,
Congratulations, hopefully your numbers will go down real fast now. It sure is rough waiting for test results,over and over isn't it? Take Care Billie
Advanced Member
Posted 24 April 2012 - 07:58 AM
The better of two evils, but not 100% satisfying! I can understand how you must feel. In one sense you are relieved you do not have any mutations and that is really good news, but you still have it in your head that you are not responding that well and it is frustrating you. I think you are responding pretty well and over time things will improve. Beyond mutations some drugs just work better in some people than others do so if things don't improve response wise, a switch to Sprycel is still certainly an option. Hopefully these results give you some peace of mind that while you may be responding slower than you like, you don't have something tricky going on.
Advanced Member
Posted 24 April 2012 - 08:58 AM
Hi Josh,
Negative is always a good result, but as Lucky said the frustration continues because of where you would like to be with response. Best of luck with your treatment and hopefully your numbers will soon be headed downward. Positive vibes headed your way.
Advanced Member
Posted 24 April 2012 - 09:14 AM
HI, Pam. . .been under the weather a bit. Home from work today hoping a day off will help.
Advanced Member
Posted 24 April 2012 - 09:15 AM
Feel better soon Marnie, sending get well thoughts your way.
Member
Posted 24 April 2012 - 01:20 PM
Hey Guys,
Thanks for all the comments. Lucky, you hit the nail on the head. The "why" is always hard to figure out. Maybe this dosage increase will do something, or maybe I have an element of being primarily resistant? Who knows, really. I was diagnosed with a pretty high disease burden. WBC, 289,000. My pcr at dx was only 1.1 though, I guess, which I find odd. This might as far as I ever get with response. I've emailed a lot of the pros and they've all given me different responses. Drucker basically said "CCyR is fine with me and I find that responses improve over time". Who knows what my future will be. I never in my life would have predicted getting leukemia at 27, but life is most certainly a gamble I guess. I do pray that I get over this "hump", only time will tell I guess.
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