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CML with Second Chromosome Translocation

Started by campanula , Apr 21 2016 10:00 PM

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23 replies to this topic

#21 Pin

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Posted 26 May 2016 - 05:55 AM

Wow, that's amazing progress! Congratulations, that must feel good

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

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#22 Dootch

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Posted 30 May 2016 - 03:01 PM

Campanula,

I also have a three way variant translocation t(9;22;12) (q34;q11.2;q13). I was diagnosed about 4 1/2 years ago and was started on Nilotinib 600mg daily. I also had a good initial response of about 0.6% - 1.3% (depending on the lab) after 3 months and I continued to have very slow and steady improvement after that. After a good initial response, then an increase to 800mg Nilotinib daily at 18 months, it took me almost 3 years after dx to obtain and maintain a 3 log reduction and MMR. Like Trey said, sometimes the response can slow and be different for variant translocations. I hope your response continues at a quick rate, however, if your response slows down (like mine did) it is very possible and likely you will get to MMR or better, it just may take some time.

Cheers.

Dootch

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#23 campanula

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Posted 30 May 2016 - 05:35 PM

Thank you, Dootch, for the encouragement - I'm so glad you were able to achieve and hold MMR. I will keep your words in mind as I move through this next phase. Do you see a CML specialist? I'm wondering if I should switch to one.

Dx 2/16: PCR = 59.4%

BMB showed second translocation.

400 mg generic Imatinib

5/16: PCR = 0.88%

8/16: PCR = 0.04%

11/16 PCR = 0.01%

2/17 PCR < 0.01%

2/17 BMB results: all translocations gone.

6/17 PCR = 0.03%

9/17 PCR = 0.01%

1/18 PCR = 0.01%

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#24 Dootch

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Posted 31 May 2016 - 08:36 AM

Yes campanula, I have a CML specialist and was also referred to another one (a regional CML specialist) for a second opinion when my response slowed. Both Doctors were not very concerned with my variant translocation and recommended to continue with the Nilotinib albeit a higher dose. I was also told, and now believe, that some people simply respond at a slower rate. Everyone is different.

It sounds like you really want to understand the details of your CML and therefore a specialist may be best suited to answer all of your queries. This forum is also an excellent source of information, wisdom and support.