I have been off t.k.i's since May this year and I'm not on a clinical trial. My Onc. just orders blood test's every month and says all the readings ....so far are good and all negative. I worry that the right testing is being done,. This is what he writes on the blood pathology test, FBC, BCR ABL. Can someone tell me if this o.k. please. I was diagnosed 4 years ago and didn't have any where as high as some of the readings I have seen on this post. I am very stressed and at the moment am going through an awful time in my life, [ family issues] Any help or reassurance would be so welcome. Many thanks.
i have been off sprycel for 7 months now
Posted 29 December 2015 - 04:11 AM
Posted 29 December 2015 - 07:37 AM
Gabrielle - From what you wrote in your post you are doing terrific so far. Your Oncologist reports your results are negative with respect to bcr-abl. That is key. It would be better if he wrote which tests he is having you take each month. It is reasonable that he is having you take monthly PCR tests and that the results are your PCR is undetectable for bcr-abl. You should ask to be 100% sure. But I am 99% sure that is what he is doing.
At seven months no detection, you are over a major hurdle. Most patients who relapse following cessation do so by six months. I lasted three months before my PCR became positive again - but I was able to continue for another six months before I decided (my Onc preferred I continue of TKI) to resume my TKI and test that I can drop back down easily (which it did).
Don't be stressed regarding this. You're doing fine. And even if you do pop up again, resuming therapy will drop you back down.
Why did you stop your TKI?
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 29 December 2015 - 10:56 AM
Congratulations Gabrielle. Although there aren't any absolute guarantees, according to the results of previous Stop studies http://bit.ly/1XyGyL5 if you have remained PCRU for seven months after stopping a TKI, there is only a small chance of relapse beyond this point.
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
Posted 29 December 2015 - 05:59 PM
Thankyou, Scuba and Buzz for replying to me , you have been an enormous help and I am very grateful. Scuba, the main reason for stopping is that I had fluid around my heart and slight enlargement as well. I had previously had 2 plural effusions, this was resolved by taking a fluid tablet [ frusemide 40 mg, Predisololone 5 mg and 2 Slow K [ Potassium Chlor 600 mg] I took these along with 50 mg Sprycel for 2 years prior to cessation. You both have reassured me and I am feeling so much better today. I just hope I can continue this way, but as you said Scuba, if needed I will resume therapy again. Thankyou so much, I hope you both and everyone else on this wonderful site is doing well. xx
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