Member
Posted 29 April 2016 - 02:35 PM
I just got results of my latest PCR at around ~11 months after starting Gleevec 400mg. They are 0.183 compared to 0.16 3 months ago. It is a slight rise which is concerning. The doctor has ordered a retest and a mutation test to determine next steps.
I guess we will either have to increase Gleevec or switch to Sprycel. Is it worth continuing Gleevec at 400mg for 3 more months? I have the side effects more or less under control and am wary to switch.
Thanks
Advanced Member
Posted 29 April 2016 - 03:16 PM
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Cancer Sucks!
Advanced Member
Posted 29 April 2016 - 03:18 PM
I just got results of my latest PCR at around ~11 months after starting Gleevec 400mg. They are 0.183 compared to 0.16 3 months ago. It is a slight rise which is concerning. The doctor has ordered a retest and a mutation test to determine next steps.
I guess we will either have to increase Gleevec or switch to Sprycel. Is it worth continuing Gleevec at 400mg for 3 more months? I have the side effects more or less under control and am wary to switch.
Thanks
maxim, a single test plateau is not a wall, and there is essentially little difference between 0.16 and 0.183, especially considering the possible inaccuracies in test results; it's certainly nothing to panic about.
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 PCR result pending... 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
Advanced Member
Posted 29 April 2016 - 04:01 PM
Calm !
This strange result is wrong !
Wait for some time before thinking about doing something .
Advanced Member
Posted 30 April 2016 - 07:57 AM
A mutation test at your low level will be a waste of money. You might suggest to your doctor to wait for your next test to see what happens.
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>
Advanced Member
Posted 30 April 2016 - 09:01 AM
I just got results of my latest PCR at around ~11 months after starting Gleevec 400mg. They are 0.183 compared to 0.16 3 months ago. It is a slight rise which is concerning. The doctor has ordered a retest and a mutation test to determine next steps.
I guess we will either have to increase Gleevec or switch to Sprycel. Is it worth continuing Gleevec at 400mg for 3 more months? I have the side effects more or less under control and am wary to switch.
Thanks
Lots of good advice for you. The second decimal place to the right is not significant in comparison to the first decimal place. The third decimal place is meaningless. Another way to look at your result is that you are between 0.1 and 0.2. You are at MMR which is a good place. You can keep going with Gleevec and your levels are likely to remain the same or continue to drop slowly. If you change drugs (to Sprycel), the nausea you feel with Gleevec will likely disappear (Sprycel does not cause nausea anywhere close to Gleevec) and there is an outstanding chance your PCR level will drop significantly (more than a log) from 0.18 to 0.01 or even lower.
It's a toss of the dice whether to go another three months or switch drugs. I would switch drugs to low dose Sprycel first to minimize side effects at the start. Test in one month to verify that your PCR is, in fact dropping. If it is - you have a new drug, at low dose and can go from there. If your result is the same, then you can increase your Sprycel dose and test again in one month to verify response. What you are doing with your Oncologist is "tuning" your treatment to you. At 11 months, you are already doing great.
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"
Member
Posted 30 April 2016 - 11:06 AM
Thanks for your replies. It is making me feel much better.
rcase13, Buzzm1, yes this seems more like a plateau within error margins.
R0f0l3, yes, I really hope retest comes lower than 0.16 but will accept it for what it is.
hannibellemo, the mutation test is on hold pending BCR-ABL results.
scuba, thanks for the advice. I am thinking that the idea of switching to low dose sprycel is very good. I just need to convince my oncologist. Guess just have to wait for the retest results and then decide next steps.
I will post once I learn more.
Thanks!
Member
Posted 02 May 2016 - 07:45 PM
I got the results of the retest today. The reading was 0.058. So, will continue as is 
Advanced Member
Posted 02 May 2016 - 09:04 PM
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Cancer Sucks!
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