Advanced Member
Posted 13 September 2016 - 06:58 PM
This article is worth reading as an overview of the most recent information about TKI side effects and management of those side effects. As an overview it is not all-inclusive, but the info is located in one place which can be useful.
http://www.nature.co...eu2016104a.html
Advanced Member
Posted 14 September 2016 - 09:39 AM
I probably should not of read that. I am on Tasigna. Now i am more worried than ever. I have been undetected for about 3 months. Possibly 6 months. I think I will ask to be switched to Gleevec. It seems to be the safest.
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Cancer Sucks!
Advanced Member
Posted 14 September 2016 - 10:17 AM
I probably should not of read that. I am on Tasigna. Now i am more worried than ever. I have been undetected for about 3 months. Possibly 6 months. I think I will ask to be switched to Gleevec. It seems to be the safest.
If you do switch to Gleevec, you would be wise to think about doing so at a slightly reduced dosage, and then work down from there, to lessen the chance of side-effects even more.
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
Advanced Member
Posted 14 September 2016 - 10:35 AM
European LeukemiaNet recommendations for the management and avoidance of adverse events of treatment in chronic myeloid leukemia http://go.nature.com/2cLEtGQ
Known Side-effects
Gleevec Imatinib http://bit.ly/1SWEl7W
Tasigna Nilotinib http://bit.ly/1RNVh1i
Sprycel Dasatinib http://bit.ly/1Klbqn3
Bosulif Bosutinib http://bit.ly/1OXC7DL
Iclusig Ponatinib http://bit.ly/1nbKWzI
posted for the purpose of generating a linked reference page as shown below under Side-Effects
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
Advanced Member
Posted 14 September 2016 - 11:06 AM
All TKI's affect the heart:
http://circ.ahajourn...ontent/118/1/84
So choice of TKI for treatment should be based on effectiveness in treating CML AND your particular side effects profile. Recent research does suggest that second generation TKI's (Tasigna, sprycel ...) provide a faster, deeper response than Gleevec, but all reach the significant milestone of CCyR which is the benchmark for progression free survival.
Lowering the dose of a TKI decreases the potential damage to the heart significantly. So dose reduction where the lowest dose that maintains response should be a goal.
And ultimately getting off these toxic drugs should be an even greater goal.
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"
Advanced Member
Posted 16 September 2016 - 02:22 PM
Thanks, Trey, that's a good read and valuable. However, I was sorry to see nothing about depression and anxiety, fatigue, brain fog (beyond just memory issues), wound healing, or infections listed among the adverse effects/events. It was good to see all the retrospective data gathered and organized into one place, but retrospective it is, and unfortunately not much data was gathered on the items I listed, apparently. Maybe in the next 10 years!
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.
Advanced Member
Posted 17 September 2016 - 04:19 PM
New Member
Posted 18 September 2016 - 09:16 PM
Thanks for the great information! I'm new to the community - but was diagnosed 3/2015. Started on Gleevec and just switched to Sprycel due to diminished response.
On 100 mg Sprycel for last 10 days - and have had headaches (which seem to be diminishing). But have INCREDIBLE stomach upset (sounds like a seltzer bottle is going off in there), severe lower abdominal pain, and diarrhea.
Reading various posts, it seems like a lower dose of Sprycel might be an answer - or maybe I have something else going on in addition to expected side effects.
Anyone else have this kind of reaction?
Thanks for the insight!
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