I year on Tasigna. Is this OK progress?
Posted 08 October 2015 - 10:08 AM
10/01/2014 100% Diagnosis
01/02/2015 0.06% Tasigna
04/08/2015 0.01% Tasigna
07/01/2015 0.01% Tasigna
10/06/2015 0.02% Tasigna
Little worried that I hit the 0.06% really fast but then stalled out and now increasing a little. Should I be concerned?
The 0.01% results could be less than 0.01% but my testing center won't report on anything less than 0.01% unless it is undetected.
Is there any chance of me getting to undetected on Tasigna? Or will I have to be happy with where I am? Am I growing resistant to Tasigna?
Tired of being scared all the time.
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Posted 08 October 2015 - 10:37 AM
Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.
Nov 8th 2017 went off Tasigna
Dec 1st PCRU off TKI
Jan 5th PCR Detected .0625
Feb 1st PCR Detected .7815
Added 8-6 grams Curcumin daily in Feb
March 3rd PCR Detected 3.2646 YIKES!
stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)
FYI I'm not done trying for my last little one.
Posted 08 October 2015 - 11:14 AM
Your experience so far is completely similar to many, many CMLrs'. Statistically, the difference between .01 and .02 is insignificant. This doesn't look like a trend in the making to me. The jump would have to be a half or whole log to be worrisome at all. My lab DID report below .01 and I would see lots of bouncing around with a couple of zeros to the right of the decimal point buoying me up, and then being disappointed the next time back to "only" .04 or .08 or .02. It's all good. It took me six years to get my first PCRU, and I wondered many times if it would ever happen to me. Way back in 2009 the thinking was that only a very small proportion of people ever got to CMR, but then so many new people began to show dramatically deep and whizbang early responses, and there started to be what seemed like a lot of people getting undetectable PCRs. I began to be discouraged. I figured if it was meant to happen in my case, it would already have happened a long time ago. So, over the years, I gradually lost the fear and got used to feeling comfortable with the relative safety of MMR. And as long as I kept that one zero - even better than MMR - I was good. Two zeros, icing on the cake. Give yourself time to get there, both literally and metaphorically. It's early days for you, and you're doing great.
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.
Posted 08 October 2015 - 11:23 AM
You have made outstanding progress! Your results are in the noise of the test at this point.
The fact that you fell to one log below major molecular remission after 3 months indicates outstanding response of your CML to Tasigna. You have reached a plateau (low level residual) that will likely continue to fade over time.
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"
Posted 08 October 2015 - 06:21 PM
Classic Tasigna plateau, except your initial slope was steeper than usual. This almost always ends with a resumption of downward PCR after a few PCR cycles. There is very little chance that anything sinister is going on.
Posted 08 October 2015 - 08:39 PM
I had a similar leveling off on Tasigna. I got .124% after 6 months and then got MMR (< .1%) 6 months later. I stayed at MMR for a little over a year until I get PCRU earlier this year.
Posted 09 October 2015 - 11:18 PM
I had a plateau/increase/noise after about a year. It stressed me out no end, I was convinced I was losing my response- I wasn't. It seems to happen very frequently, Trey has some good theories about why this might happen. I think the gist is that all the stupid cells get killed off real quick, and then the ones left might be a bit tougher so they take a bit longer to get the numbers down. Or at least that is my understanding!!
Anyway, with the supreme luxury of hindsight (that seemingly can only be gained by going through it!), I can tell you, you are in a very good position right now.
All the best to you!
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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