Simone - Sounds like a plan. Keep us posted. Will send anti-hives vibes your way.
Ranting -- possibly bad news at 21 months
Started by
Dom
, Jan 08 2016 07:05 PM
26 replies to this topic
#21
kat73
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Posted 13 January 2016 - 02:50 PM
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#22
hannibellemo
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Posted 13 January 2016 - 04:21 PM
Simone,
I had to laugh, you give me so much credit. If we could still go back and find our old posts you'd see that if it wasn't for this group I would have been a total basket case. Talk about a whiner, my picture in is the dictionary!
Hope all goes well.
Pat
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
#23
kat73
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Posted 13 January 2016 - 06:54 PM
Next to mine, Pat!
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#24
Dom
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Posted 28 January 2016 - 09:06 AM
Well, my test results came in. Mixed bag.
First, the pcr dropped to 0.07, so my last results were ...
5/2015 ... 0.16
8/2015 ... 0.03
12/2015 ... 0.55
1/2016 ... 0.07
All results are for b2a2 transcript. The oncologist believes that the one in December 2015 is such an outlier, that it can be safely ignored. The last one is not as good as it should be, I'd prefer something less than 0.03, but it is still low. (That's not CCyR, is it?)
As far as the kinase mutation, there was not enough blood drawn for a decent test -- never heard of that happening before. But my oncologist says he doesn't feel the urgency for it anymore, so we'll try again in 2 months, at my usual appt.
I'm breathing easier.
First, the pcr dropped to 0.07, so my last results were ...
5/2015 ... 0.16
8/2015 ... 0.03
12/2015 ... 0.55
1/2016 ... 0.07
All results are for b2a2 transcript. The oncologist believes that the one in December 2015 is such an outlier, that it can be safely ignored. The last one is not as good as it should be, I'd prefer something less than 0.03, but it is still low. (That's not CCyR, is it?)
As far as the kinase mutation, there was not enough blood drawn for a decent test -- never heard of that happening before. But my oncologist says he doesn't feel the urgency for it anymore, so we'll try again in 2 months, at my usual appt.
I'm breathing easier.
Diagnosed in February 2014. Started Imatinib 400 in April.
2014: 3.18 0.91
2015: 0.22 0.16 0.04 0.55
2016: 0.71 0.66
(Started Imatinib 600 in April 2016)
2016: 0.42 0.13 0.45
2017: 0.17 0.06 0.10 0.06 0.34
#25
scuba
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Posted 28 January 2016 - 11:49 AM
There is no difference between your 0.03 result from August and your current 0.07 result. The PCR testing process is just not that accurate at these levels. The 0.55 result is almost certainly a reporting error (i.e. probably not even your blood result - could be someone else's. It happened to me a couple of times).
Any result below 0.1% IS scale is an outstanding result in terms of progression free survival. 0.1% is the definition of both complete cytogenetic response and major molecular remission. At 0.07 you are below the major molecular remission threshold. You are already at CCyR*
You don't need a kinase mutation test. You are and have been responding to treatment.
(*technically CCyR is confirmed with a FISH test yielding a zero result not PCR. FISH test counts the number of CML cells under the microscope. A zero count is the definition of complete cytogenetic response. It correlates "roughly" to PCR of 0.1%).
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
#26
Dom
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Posted 28 January 2016 - 03:25 PM
Thanks for the info, Scuba. I thought I had last CCyR, but I guess not.
Diagnosed in February 2014. Started Imatinib 400 in April.
2014: 3.18 0.91
2015: 0.22 0.16 0.04 0.55
2016: 0.71 0.66
(Started Imatinib 600 in April 2016)
2016: 0.42 0.13 0.45
2017: 0.17 0.06 0.10 0.06 0.34
#27
Lucas
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Posted 28 January 2016 - 04:41 PM
Dom, you're doing great. As scuba said 0.07 and 0.03 are basically the same result and the 0.55 must be an error. we always have to follow the trend, and not a particular result ( i know, it's easier to say). good luck!
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