just want to thank trey for the best advice. i was dxd with cml=ph and mds. i was on 100 mg sprycel. trey advised me my mds was due to the drugs. so i tapered off and slowly went down to 40 mg. i have a bmb every 3 mos and a cbc monthly so i was able to monitor my stats.ok just had a bmb and i am undetectable on all 3. yeah for me. so a big thank you to trey and you all for the support
Posted 25 January 2014 - 10:29 PM
That is great news Sarah. So many different things can happen when meds are adjusted or changed. Trey always gives us good advice too.
Posted 26 January 2014 - 09:04 PM
Good to hear you are doing well after all you have gone through. For others to understand, Sarah's Onc said she had MDS along with CML. That was because she had Trisomy 8. But Trisomy 8 can result from TKI therapy. So I had told her she likely had a TKI induced Trisomy 8 instead of MDS. That is something several people here have.
Sarah also has a 3-way translocation 46,xx,t[9,22,15][q34;q11.2;p11.1] whereby along with the regular 9 and 22 translocation her chromosome 15 is also involved. These 3-way translocations sometime cause the TKIs to take longer to work. Sarah has been through a lot, and I am glad to see her coming through it all so well.
Posted 28 January 2014 - 05:11 PM
That's great news Sarah, thank you for the update!
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
Posted 10 February 2014 - 01:09 PM
thank you for explaing it. i am so glad i listened to you.
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